[Senate Hearing 112-921]
[From the U.S. Government Publishing Office]




                                                        S. Hrg. 112-921

    OLMSTEAD ENFORCEMENT UPDATE: USING THE ADA TO PROMOTE COMMUNITY 
                              INTEGRATION

======================================================================

                                HEARING

                                 OF THE

                    COMMITTEE ON HEALTH, EDUCATION,
                          LABOR, AND PENSIONS

                          UNITED STATES SENATE

                      ONE HUNDRED TWELFTH CONGRESS

                             SECOND SESSION

                                   ON

  EXAMINING AN UPDATE ON OLMSTEAD ENFORCEMENT, FOCUSING ON USING THE 
    AMERICANS WITH DISABILITIES ACT TO PROMOTE COMMUNITY INTEGRATION

                               __________

                             JUNE 21, 2012

                               __________

 Printed for the use of the Committee on Health, Education, Labor, and 
                                Pensions


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          COMMITTEE ON HEALTH, EDUCATION, LABOR, AND PENSIONS

                       TOM HARKIN, Iowa, Chairman

BARBARA A. MIKULSKI, Maryland
JEFF BINGAMAN, New Mexico
PATTY MURRAY, Washington
BERNARD SANDERS (I), Vermont
ROBERT P. CASEY, JR., Pennsylvania
KAY R. HAGAN, North Carolina
JEFF MERKLEY, Oregon
AL FRANKEN, Minnesota
MICHAEL F. BENNET, Colorado
SHELDON WHITEHOUSE, Rhode Island
RICHARD BLUMENTHAL, Connecticut

                                     MICHAEL B. ENZI, Wyoming
                                     LAMAR ALEXANDER, Tennessee
                                     RICHARD BURR, North Carolina
                                     JOHNNY ISAKSON, Georgia
                                     RAND PAUL, Kentucky
                                     ORRIN G. HATCH, Utah
                                     JOHN McCAIN, Arizona
                                     PAT ROBERTS, Kansas
                                     LISA MURKOWSKI, Alaska
                                     MARK KIRK, Illinois
                                       

             Pamela J. Smith, Staff Director, Chief Counsel

                 Lauren McFerran, Deputy Staff Director

     Frank Macchiarola, Republican Staff Director and Chief Counsel

                                  (ii)

 


                            C O N T E N T S

                               __________

                               STATEMENTS

                        THURSDAY, JUNE 21, 2012

                                                                   Page

                           Committee Members

Harkin, Hon. Tom, Chairman, Committee on Health, Education, 
  Labor, and Pensions, opening statement.........................     1
Enzi, Hon. Michael B., a U.S. Senator from the State of Wyoming, 
  opening statement..............................................     2

                           Witnesses--Panel I

Perez, Thomas E., Assistant Attorney General, Civil Rights 
  Division, U.S. Department of Justice, Washington, DC...........     2
    Prepared statement...........................................     5
Claypool, Henry, Principal Deputy Administrator, Administration 
  for Community Living, U.S. Department of Health and Human 
  Services, Washington, DC.......................................    10
    Prepared statement...........................................    12

                          Witnesses--Panel II

Landgraf, Rita M., Secretary, Delaware Department of Health and 
  Social Services, New Castle, DE................................    22
    Prepared statement...........................................    24
Baugh, Zelia, Commissioner, Alabama Department of Mental Health, 
  Montgomery, AL.................................................    32
    Prepared statement...........................................    34
Thornton, Sr., Ricardo, Former Resident of Forest Haven, 
  Washington, DC.................................................    40
    Prepared statement...........................................    42

                          ADDITIONAL MATERIAL

Statements, articles, publications, etc.:
    National Disability Rights Network...........................    55
    Letters:
        ADAPT Community..........................................    56
        Judge David L. Bazelon Center for Mental Health Law......    63
        VOR......................................................    65

                                 (iii)

  

 
    OLMSTEAD ENFORCEMENT UPDATE: USING THE ADA TO PROMOTE COMMUNITY 
                              INTEGRATION

                              ----------                              


                        THURSDAY, JUNE 21, 2012

                                       U.S. Senate,
       Committee on Health, Education, Labor, and Pensions,
                                                    Washington, DC.
    The committee met, pursuant to notice, at 9:29 a.m. in room 
SD-430, Dirksen Senate Office Building, Hon. Tom Harkin, 
chairman of the committee, presiding.
    Present: Senators Harkin, Franken, and Enzi.

                  Opening Statement of Senator Harkin

    The Chairman. The Senate Committee on Health, Education, 
Labor, and Pensions will come to order.
    I apologize to everyone, but because of votes on the floor, 
we had to move this up half an hour. The first vote is at 
11:00, so we will have to close this down right around 11:10 or 
11:15 so I can make that first vote. Then we just have a whole 
bunch of votes after that, so we will not be able to come back. 
I am going to ask everyone to cut their statements short, so we 
can at least have some discussion between now and 11 o'clock.
    The title of this hearing is, ``Olmstead Enforcement 
Update: Using the ADA to Promote Community Integration.'' This 
hearing follows up on a similar hearing that we held in 2010.
    Tomorrow, we mark the 13th anniversary of the U.S. Supreme 
Court's landmark decision in Olmstead, holding that the civil 
rights of people with significant disabilities are violated 
when people are unnecessarily segregated from the rest of 
society. The Olmstead decision was a critical step forward for 
our Nation, following in the tradition of cases like ``Brown v. 
Board of Education.''
    When Congress passed the ADA in 1990, we described the 
isolation and segregation of individuals with disabilities as a 
serious and pervasive form of discrimination. In Title II of 
the ADA, which proscribes discrimination in the provision of 
public services, we specified that,

          ``No qualified individual with a disability shall, by 
        reason of such disability, be excluded from 
        participation in, or denied the benefits of, a public 
        entity's services, programs, or activities.''

    In Olmstead, the Court held that unnecessary 
institutionalization of individuals with disabilities 
constitutes discrimination, and that the two women plaintiffs 
had a right to be provided community-based options.
    We will hear today from leaders at the Department of 
Justice, and the Department of Health and Human Services; also 
a panel that includes officials from Delaware and Alabama. And 
a long-time self-advocate leader from the District of Columbia 
who will speak from personal experiences about life in an 
institution and contrast that with his life living in the 
community.
    I yield to Senator Enzi. I cut my statement short because 
we only have an hour and a half this morning.

                   Opening Statement of Senator Enzi

    Senator Enzi. I know and I appreciate it.
    I appreciate the passion that you have for this, and the 
enthusiasm, and the great panels we are going to have today.
    The Chairman. I appreciate that very much.
    I want to publicly thank Senator Enzi for all of his great 
work in this area too. This has been a great non-partisan, bi-
partisan issue ever since ADA, and we approach it in that same 
pattern again today.
    Our first panel is Mr. Tom Perez, Assistant Attorney 
General for Civil Rights in the U.S. Department of Justice. He 
has spent his entire career in public service, first as a 
career attorney at the Civil Rights Division, and then as 
Assistant Attorney General for Civil Rights at the Justice 
Department, and later as Director of the Office for Civil 
Rights at the U.S. Department of Health and Human Services. He 
is no stranger up here. He was Special Counsel to the late 
Senator Edward Kennedy, who was a former Chair, along with 
Senator Enzi of this committee.
    Joining Mr. Perez on the first panel is Mr. Henry Claypool, 
Principal Deputy Administrator of the Administration for 
Community Living at the U.S. Department of Health and Human 
Services, a senior advisor to the Secretary on disability 
policy. Again, long experience; 25 years of experience 
developing and implementing disability policy at the Federal, 
State, and local levels.
    All of your statements will be made a part of the record in 
their entirety, and so we will start with Mr. Perez and Mr. 
Claypool. If you could sum it up in 5 to 7 minutes, I would 
sure appreciate it.
    Mr. Perez. I sure will.
    The Chairman. Tom, welcome back.

STATEMENT OF THOMAS E. PEREZ, ASSISTANT ATTORNEY GENERAL, CIVIL 
  RIGHTS DIVISION, U.S. DEPARTMENT OF JUSTICE, WASHINGTON, DC

    Mr. Perez. It is an honor to be here, Mr. Chairman and 
Senator Enzi.
    It is an honor to be here with both of you, and with this 
committee, and with my friend and colleague, Henry Claypool, 
and Secretary Landgraf, and other leaders throughout the 
country.
    The Court's ruling in Olmstead has often been called the 
``Brown v. Board'' of the disability rights movement. As you 
know, as you just stated, the Supreme Court in Olmstead 
recognized for the first time that the civil rights for people 
with disabilities are violated when they are unnecessarily 
segregated from the rest of society.
    When I became Assistant Attorney General, I identified 
Olmstead enforcement as one of our top priorities. Consistent 
with the administration's ``Year of Community Living,'' in the 
last 3 years the Division has been at the forefront of ADA 
enforcement involving the unjustified isolation of people with 
disabilities, and taken an active role in more than 40 cases in 
25 different States.
    We have also significantly expanded our collaborations with 
other Federal agencies including HHS and my friend Henry, the 
Department of Housing and Urban Development, and the Department 
of Labor. I met with Seth Harris, literally a week ago, to talk 
about supported employment, an issue, I know, that is near and 
dear to your heart. Partnerships with our colleagues across 
agencies, stovepipe implosion, I call it. It is critical 
because they reflect the lessons we have learned from the past.
    Merely moving people out of institutions is not enough; 
people must have access to the support of employment, services, 
and housing that will enable them to be safe and succeed in the 
community. In addition, the community will be a realistic 
alternative only if people with disabilities, and their family, 
can feel confident that the transition will be safe and that 
the supports necessary to survive are, indeed, available. Our 
agreements, therefore, call for discharge planning, transition 
processes that provide opportunities to thoroughly explore 
community placements and to connect with other families whose 
loved ones have also transitioned to the community.
    Throughout our Olmstead work, we helped States comply, not 
only with their legal obligations under the ADA, but also with 
their fiscal obligations to taxpayers by moving them from 
expensive institutional care to more cost-effective community-
based services. Secretary Landgraf has been in the forefront of 
that movement in Delaware, as well as Governor McDonnell in 
Virginia and former Governor Perdue in Georgia. And equally 
importantly, Olmstead implementation serves the State's moral 
compact with people with disabilities to ensure that they can 
live their highest and best uses of their talents, and realize 
all of their dreams and hopes.
    We have used a variety of different tools in our Olmstead 
work including reaching system-wide settlement agreements to 
expand community opportunities for thousands of people in 
several States; filing statements of interest to help develop 
the law; suing States when necessary to ensure Olmstead 
enforcement; and developing guidance and a Web site on Olmstead 
enforcement to help people understand their rights and 
obligations.
    We have engaged in the work on behalf of people with a 
variety of disabilities including developmental disabilities, 
intellectual disabilities, mental illness, and physical 
disabilities, and on behalf of both adults and children.
    This work assists people unnecessarily segregated in 
institutions as well as those at-risk of institutionalization. 
We have challenged unlawful segregation in a wide array of 
settings including State-run facilities, private-run facilities 
such as nursing homes, and board and care homes, and 
nonresidential settings.
    Most recently in Virginia, we entered into a landmark 
settlement to shift Virginia's developmental disability system 
from one heavily reliant on large, expensive State-run 
institutions to one focused on safe, individualized, and cost-
effective community-based services that promote integration, 
independence, and full participation by people with 
disabilities in community life.
    I again applaud Governor McDonnell. He was a very critical 
partner in this effort to ensure not only compliance with the 
ADA, but ensuring that we do so in a way that is cost-
effective, and addresses the moral compacts that I mentioned 
before.
    We spent a lot of time in that process consulting with the 
community, because it is important to involve the community in 
this effort, to hear their voice, and to make sure that their 
voice is indeed heard and reflected in our agreements. There 
are many other places, as I noted, where we are doing 
significant Olmstead work and where such work is necessary.
    In October 2010, we reached a very comprehensive agreement 
with Georgia and former Governor Sonny Perdue, and I applaud 
him. I went down personally and met with him. I applaud him for 
his leadership so that we could help many people with 
developmental disabilities and mental illness to ensure that 
they can live in the most integrated setting.
    As you will hear from Secretary Landgraf, in July 2011, we 
reached a similarly comprehensive agreement with Delaware to 
transform the State's mental health systems.
    Our allies include sheriffs because all too many States--I 
was with the major county sheriffs last week, and the Sheriff 
in Tulsa, OK said, ``I run the largest mental health facility 
in the State of Oklahoma, and that is the county jail.'' All 
too frequently, county jails have become repositories for 
people who do not have criminal justice needs, but have mental 
health needs, but we do not have community infrastructure to 
deal with it. And that is an issue that I spent literally 
almost the entirety of my meeting with the sheriffs discussing. 
In Georgia, the county sheriffs were very helpful in building 
this new infrastructure, and elsewhere they have been 
exceedingly helpful. And so, we continue to do this work across 
the country.
    We have filed suits, recently, in New Hampshire to address, 
again, the unnecessary institutionalization of people with 
mental health needs. We are working now with the States of 
Mississippi and North Carolina to, hopefully, come up with 
collaborative solutions to these issues because these efforts 
will continue to be dynamic. They will continue to be ongoing. 
We learn from every case that we do and we try to do the next 
case that much better.
    We are working on the issues of supportive employment. We 
filed, as you may be aware, Mr. Chairman, a statement of 
interest in Oregon involving private plaintiffs who asserted 
that Olmstead applies to where individuals seek integrated, 
supported employment services but, regrettably, they are being 
unnecessarily placed in other services that are not the highest 
and best uses of their talents. And as we know, Olmstead is 
more than simply where you live, it is also how you live, and 
that is what we are working on.
    In the end, Mr. Chairman, this is about people. And I have 
had the privilege of meeting with, and helping, people with 
disabilities and their families. And the sentence I remember 
the most from all of my conversations was a person with a 
disability who was able to move into the community who said, 
quite simply yet eloquently, ``Thank you for giving me back my 
life.'' That is what this is about.
    It is not a partisan issue. It never has been, never will 
be. It is about giving people back their lives, and about 
informed choice, and that is what Olmstead is about. That is 
what it will continue to be.
    Thank you for this opportunity to shine a light on our 
work, and this important issue, and the work that lies ahead.
    [The prepared statement of Mr. Perez follows:]
                 Prepared Statement of Thomas E. Perez
    Good morning Chairman Harkin, Ranking Member Enzi and members of 
the committee. Thank you for holding this hearing about implementation 
of the Supreme Court's landmark Olmstead v. L.C. decision. The Court's 
ruling has often and properly been called the Brown v. Board of 
Education of the disability rights movement.
    As the 13th anniversary of the Olmstead decision approaches, I am 
pleased to testify today about the Civil Rights Division's Olmstead 
enforcement work and about the Department's active role in ensuring 
that people with disabilities can realize their full potential. As you 
know, in Olmstead, the Supreme Court recognized for the first time that 
the civil rights of people with disabilities are violated when they are 
unnecessarily segregated from the rest of society. The Court's decision 
acknowledged that segregating individuals with disabilities in 
institutional settings deprives them of the opportunity to participate 
in their communities, interact with individuals who do not have 
disabilities and make their own day-to-day choices; it also recognized 
that unnecessary institutionalization stigmatizes people with 
disabilities, reinforcing misunderstanding and negative stereotypes.
    The Olmstead decision was heralded as the impetus to finally move 
individuals with disabilities out of the shadows, and to facilitate 
their full integration into the mainstream of American life. Over the 
several years following the decision, through advocacy and policy and 
programmatic changes at the State and Federal level, there was some 
progress toward this goal. But the hoped-for sea change in the lives of 
people with disabilities has not come to fruition. More than a decade 
after Olmstead, many individuals across the country who can live in the 
community and want to live in the community remain unnecessarily 
institutionalized.
    For that reason, when I became Assistant Attorney General in 2009, 
I identified enforcement of the Olmstead decision as one of the 
Division's top priorities. In the last 3 years, the Division has been 
involved in more than 40 matters in 25 States. We have also 
significantly expanded our collaborations with other Federal agencies, 
including the Departments of Health and Human Services (HHS), Housing 
and Urban Development and Labor, recognizing that community integration 
can only be successful if people have access to necessary community 
services and housing. Through our Olmstead work, we help States comply, 
not only with their legal obligations under the ADA, but also with 
their fiscal obligations to taxpayers, by moving from expensive 
institutional care to more cost-effective community-based services that 
allow the State to leverage Federal dollars most effectively. As 
importantly, Olmstead implementation serves States' broader interest in 
serving people with disabilities in the way most conducive to 
independence and full participation in community life.
    The Division's Olmstead enforcement efforts have been driven by 
three goals: (1) people with disabilities should have opportunities to 
live life like people without disabilities; (2) people with 
disabilities should have opportunities for true integration, 
independence, recovery, choice and self-determination in all aspects of 
life including where they live, spend their days, work, or participate 
in their community; and (3) people with disabilities should receive 
quality services that meet their individual needs. We have learned many 
important lessons from the past. Chief among them is that it is not 
enough to move people out of institutions; we must ensure that 
individuals have the support and services that they need to lead 
successful lives in the community.
    We have used a variety of different tools in our Olmstead work, 
including reaching system-wide settlement agreements to expand 
community opportunities for thousands of people in several States; 
filing statements of interest in private litigation when questions 
arise regarding the ADA's legal requirements when necessary, bringing 
suit in court against noncompliant States and other public entities; 
and developing guidance documents and a Web site on Olmstead 
enforcement to help people understand their rights and to help public 
entities understand and implement their obligations. We have engaged in 
work on behalf of persons with a variety of disabilities, including 
developmental disabilities, intellectual disabilities, mental illness, 
and physical disabilities, and on behalf of both adults and children. 
This work assists people unnecessarily segregated in institutions as 
well as those at risk of segregation. We have challenged unlawful 
segregation in a wide range of settings, including State-run 
institutions, privately run institutions, such as nursing homes and 
board and care homes, and other non-residential settings.
                matters regarding state-run institutions
    The initial focus of our Olmstead work was on States that 
unnecessarily segregate individuals in public institutions or that 
place people at risk of entering public institutions. Our work focuses, 
not just on getting people out of these facilities, but also on the 
systemic reforms needed to ensure that public agencies do not put 
people at risk of unnecessary institutionalization.
    Most recently, in Virginia we entered into a landmark settlement, 
to resolve the Department's finding that Virginia's system for serving 
people with intellectual and developmental disabilities violates the 
ADA by placing people in or at-risk of unnecessary 
institutionalization. The agreement will shift Virginia's developmental 
disabilities system from one heavily reliant on large, expensive, 
State-run institutions to one focused on safe, individualized, and 
cost-effective community-based services that promote integration, 
independence and full participation by people with disabilities in 
community life. The agreement expands and strengthens every aspect of 
the Commonwealth's system of serving people with intellectual and 
developmental disabilities in integrated settings, and it does so 
through a number of services and supports.
    Among other things, the settlement agreement:

     Adds thousands of new Medicaid Home and Community Based 
Waiver slots for individuals to transition to the community from State-
run and privately run institutions and for people on wait lists for 
community services;
     Creates a new family support program to help care for 
persons with disabilities in their own homes or a family members' home 
to prevent their unnecessary institutionalization;
     Requires the development of a comprehensive crisis system 
that will help divert individuals from unnecessary 
institutionalization;
     Provides for an integrated housing fund because we 
recognize that housing is a critical barrier to giving full force to 
the Olmstead decision;
     Requires the development and implementation of an 
Employment First Policy, prioritizing integrated, competitive-wage 
supported employment and the expansion of integrated employment and day 
activities; and
     Requires the development of a robust and comprehensive 
community quality assurance system.

    Throughout the investigation that led to the Virginia settlement, 
we met with stakeholders across the Commonwealth, to learn their views 
about what was and was not working for people with developmental 
disabilities. We heard their problems and concerns, and ideas for 
addressing them, as well as their successes. We heard from families who 
were barely hanging on while their loved ones sat on long wait lists 
for community services and from self-advocates wanting more 
opportunities to work and live independently. We also heard from the 
families of persons now living in institutional settings who worried 
whether the needs of their loved ones could ever safely be met in 
community settings. We took these perspectives to heart, and 
incorporated them into our agreement.
    These stakeholder views have been shared, not only with the 
Department, but also with the Federal judge who is considering whether 
to permanently approve the agreement. In responding to the Court's 
invitation to submit comments on the agreement, several hundred 
Virginians movingly described the real-life impact of the shortcomings 
in the Commonwealth's current developmental disability service system, 
and explained why transformation of that system is so important. Some 
of these individuals also submitted affidavits supporting the 
agreement.
    For example, a single mother who is caring for a pre-adolescent son 
with severe autism, developmental and behavioral needs, and who faces 
an 8-year waiting list for home and community-based waiver services, 
told the Court that she is ``overwhelmed by the thought of the years 
ahead'' and not sure how she can continue to care for her family 
without the types of behavioral supports provided by the Virginia 
agreement. This woman wrote that receiving waiver supports would 
``dramatically improve'' her well-being, the well-being of her son, and 
the well-being of his non-disabled brother. The parents of a 21-year-
old with multiple disabilities who has always lived at home expressed 
their gratitude for recently received waiver services that allowed them 
to avoid institutionalization and to continue to allow their son to 
``enjoy his life to the fullest.'' These parents urged the Court to 
approve the Agreement for the benefit of many other families who 
``desperately'' need services but do not currently have them. Another 
parent, whose 6-year-old daughter is one of approximately 7,000 
individuals on a wait list for waiver services, described her joy in 
seeing that her child ``thrives in the community'' and her hope that 
her daughter can live in the community as an adult. She added, however, 
that at present, her family and many others ``live in crisis'' waiting 
for needed services.
    I have also spoken with a number of parents of people living in the 
Commonwealth's training centers and they were very concerned, as they 
wondered what sort of quality control would be in place if or when 
their child moved into a decentralized setting in the community. I 
respect this concern. The Olmstead decision recognized that people with 
disabilities will move to appropriate community-based settings if they 
do not oppose such placement. For too long, people with disabilities 
have not been given meaningful choices or appropriate information to 
make informed choices about community services. Moving to the community 
will not be a realistic option for persons with disabilities if they 
and their families do not believe that the transition will be made in a 
thoughtful, respectful manner, and if they cannot feel confident that 
persons with disabilities will have the support needed to be safe and 
to thrive in the community. That is why the Virginia agreement includes 
a discharge planning process that includes family and community 
providers, and provides the opportunity to thoroughly explore community 
alternatives. Our consideration of the concerns expressed by family 
members is one of the reasons why the Virginia agreement includes 
enhanced protections for any person transitioning from a training 
center to the community.
    The requirements in the Virginia agreement build and expand upon 
settlements we've reached in the past. For example, in October 2010, 
the Department, the HHS Office for Civil Rights, and Georgia reached a 
comprehensive, court-enforceable agreement regarding the Georgia system 
for serving people with developmental disabilities and mental illness. 
As a result of the agreement, Georgia is putting into place community-
based services and supports for more than 1,000 individuals with 
developmental disabilities and expanding home and community-based 
waivers for individuals transitioning out of the State's developmental 
disabilities facilities and for people who are at risk of 
institutionalization. The State is also developing services and 
supports for more than 9,000 people with mental illness.
    In the first year of the agreement, Georgia provided supported 
housing to more than 100 individuals with mental illness, and will 
provide the same supports for an additional 400 individuals with mental 
illness this year. The State increased its existing community services 
to 20 Assertive Community Treatment (ACT) teams; two intensive case 
management teams; two community support teams; and maintained a crisis 
hotline, case management services, five crisis stabilization units, and 
peer support services. One State psychiatric hospital was closed, and 
the State negotiated agreements for the provision of services in 
community hospitals. Among the individuals who benefit from these 
actions is a man with a mental health diagnosis had been chronically 
homeless and was living in a tent. Initially, the ACT team worked with 
this man to find temporary housing at an extended stay hotel. Once his 
housing voucher was approved, the ACT team helped him search for a 
suitable apartment until he chose one he liked and moved in. He 
continues to live this stable environment.
    For individuals with developmental disabilities, since signing the 
agreement, Georgia has ceased admissions to its State hospitals, 
transitioned 247 people out of these hospitals, funded an additional 
100 community waivers, and created six mobile crisis teams and five 
crisis respite homes. The State provided family supports to 450 
families of individuals with developmental disabilities this fiscal 
year. These changes helped a 9-year-old with developmental 
disabilities, who had spent her entire life living in one of the State 
hospitals, to move to the community. As a result of the agreement, this 
child is now living in a host home with a family and a nurse who is 
available to provide 24-hour-a-day care; in the fall, she will attend a 
new school where she will have the opportunity to relate to other 
children her age.
    In July 2011, we signed a comprehensive agreement with Delaware to 
transform that State's mental health system. Over the next 5 years, 
Delaware will prevent unnecessary hospitalization by expanding and 
deepening its crisis services, including a hotline, crisis walk-in 
centers, mobile crisis teams, crisis apartments and short-term crisis 
stabilization programs. Delaware will also provide community treatment 
teams and case management to individuals living in the community who 
need intensive levels of support. Our agreement also provides for 
scattered-site supported housing for everyone in the agreement's target 
population who needs it. Finally, Delaware will offer supports to 
enable persons with mental illness to lead integrated daily lives, 
including supported employment, rehabilitation services and peer and 
family supports. I'm pleased to report that Delaware is well on the way 
to meeting the agreement's July 2012 compliance benchmarks, including 
for crisis services, treatment, family support, supported housing and 
supported employment.
    In a recent Delaware monitoring visit, a Civil Rights Division 
attorney met with several people who, as a result of the agreement, 
have moved from Delaware's State psychiatric hospital into their own 
apartments in the past year. These individuals include a formerly 
homeless woman; a man who had many years of involvement with the 
criminal justice system; and a long-term psychiatric hospital resident. 
Our attorney also met a 21-year-old woman who, due to recently enhanced 
peer counseling, is now preparing to move from the State hospital to 
her own apartment in the community. These individuals described the 
positive change that our agreement had made in their lives. They said:

          ``It's one more day closer to Christmas;''
          ``I'm no longer invisible, people see you and say hi to 
        you;''
          ``Independence means being able to accept friendship from 
        other people;''
          ``I now have the right to just live and the freedom to open 
        and close doors;'' and
          ``Thank you for giving me back my life.''

    There are so many other places where we are doing significant 
Olmstead work and where such work is necessary. In December 2011, we 
issued findings that the State of Mississippi is violating the ADA and 
Olmstead in the operation of its mental health and developmental 
disabilities system. We are currently negotiating with Mississippi to 
change its service delivery system from one that unnecessarily 
institutionalizes thousands of adults and children to one that provides 
real opportunities to people unnecessarily institutionalized or at risk 
of unnecessary institutionalization. In New Hampshire, we issued 
findings in April 2011 that New Hampshire unnecessarily segregates 
individuals with mental illness in institutional settings and places 
individuals with mental illness living in the community at serious risk 
of institutionalization. We recently intervened in private Olmstead 
litigation to address these violations.
         matters regarding privately owned segregated settings
    States' Olmstead obligations are not limited to people who are 
forced to live in publicly run institutions. As many States have been 
decreasing their reliance on publicly run institutions, we have seen 
more and more individuals with disabilities inappropriately segregated 
by States in privately owned or operated institutions, including 
nursing homes. We have been very active in Olmstead enforcement in this 
area. For example, in July 2011, the Division moved to intervene in 
private litigation filed on behalf of a class of approximately 4,000 
individuals with developmental disabilities in or at risk of entering 
nursing facilities in Texas. Many of the class members had lived in the 
community successfully, but ended up in a nursing home because of the 
way the State administers its program of services for individuals with 
developmental disabilities.
    Additionally, after a lengthy investigation of North Carolina's 
mental health service system, the Division issued a findings letter in 
July 2011 concluding that the State is violating Olmstead by 
administering its system in a manner that unnecessarily segregates 
persons with mental illness in large, privately owned adult care homes. 
The Department recommended that the State implement certain remedial 
measures, including the development of scattered site-supported housing 
and the provision of adequate, community-based support services for 
people with mental illness who are unnecessarily institutionalized, or 
at risk of unnecessary institutionalization, in adult care homes. 
Currently, the Department is negotiating with North Carolina to resolve 
these findings.
    The Division also continues its participation in Disability 
Advocates, Inc. v. Cuomo, a case in which a Federal court in New York 
found, after a trial, that New York discriminates against persons with 
mental illness by operating its mental health service system in a 
manner that confines them to large, for-profit adult homes, when they 
could and want to receive services in community settings. After the 
Second Circuit vacated the trial court's decision on jurisdictional 
grounds, the Division is considering its options for how to proceed in 
the case and, as with any case, seeks to resolve the case without 
resorting to litigation.
    In other instances, we have learned of States that are segregating 
children in private nursing homes, depriving them of the opportunity to 
live with their families and in the community. In Virginia, we learned 
of almost 200 such children in private nursing homes and private 
developmental disability facilities, and our agreement provides 
community relief for them. We currently have an investigation in 
another State regarding children with physical and developmental 
disabilities in or at risk of entering nursing homes. We also have an 
open investigation into whether a State is unnecessarily placing people 
with physical disabilities at risk of being forced into nursing homes.
                         statements of interest
    The work I have described above is in addition to the Division's 
participation in dozens of private lawsuits concerning the right of 
persons with disabilities to receive services in the most integrated 
setting appropriate to their needs. We have filed briefs in 27 other 
matters in 17 States supporting private litigation regarding people who 
are unjustifiably confined to institutions or at risk of being 
segregated in an institutional setting unnecessarily.
                         guidance and web site
    The Department also has developed resources to help people to 
understand their rights and to help States understand and implement 
their obligations. In June 2011, we issued the Division's first 
technical assistance document on Olmstead enforcement. In this 
document, we describe the requirements of the ADA's integration mandate 
and provide a series of questions and answers on a range of topics. 
Among other things, this document makes clear the Department's view 
that both the mandate of Olmstead and the appropriate remedy to 
unnecessary segregation apply to the full range of settings in which 
individuals with disabilities live, work, and receive services. We also 
have a Web site dedicated to Olmstead enforcement, which includes links 
to settlements, briefs, findings letters, and other materials.
                       interagency collaboration
    In 2009, on the 10th anniversary of the Olmstead decision, 
President Obama launched the ``Year of Community Living'' directing all 
relevant Federal agencies, including the Departments of Justice, Health 
and Human Services, and Housing and Urban Development (``HUD''), to 
work together to make the promise of Olmstead a reality for Americans 
with disabilities. We have embraced this directive and worked in 
partnership with HHS, HUD, the Department of Labor, and other agencies 
that have primary responsibility for programs that are essential to 
community integration.
    We have worked with HHS, particularly the Centers for Medicare and 
Medicaid Services and the Substance Abuse and Mental Health Services 
Administration, to aid States in making the systemic changes necessary 
to provide community-based services to individuals who would be in, or 
at risk of, institutional placement. We have also worked with the HHS 
Office for Civil Rights (OCR) in matters where we have a shared 
enforcement interest. For example, in Georgia, the State failed to 
comply with a voluntary resolution agreement between OCR and the State 
to resolve longstanding Olmstead complaints and DOJ worked with OCR and 
the State to achieve a comprehensive, court-enforceable settlement. DOJ 
is currently investigating a matter in another State where OCR was 
unable to secure voluntary compliance. Moreover, as evident from the 
relief we sought in Virginia, Delaware, Georgia and other cases, we 
know that the lack of affordable housing is one of the biggest barriers 
to community living. So, we have been working with HUD to help identify 
for States Federal resources for affordable integrated housing.
    We have also collaborated with HHS and HUD on policy development, 
and we continue to work with HHS, including its newly aligned 
Administration for Community Living, and HUD to develop and disseminate 
policies that can promote integration in a consistent and comprehensive 
way.
                        ongoing and future work
    The Department's Olmstead enforcement activities are dynamic and 
ongoing. We have several ongoing investigations, and are addressing new 
issues, including: the segregation of children with disabilities, 
people with disabilities inappropriately in nursing homes, and the 
segregation of people with disabilities in day-time activities, 
including segregated work. With regard to employment, the Division has 
expanded its Olmstead work to look beyond just where people live to 
examine how people live and spend their days. Simply moving someone 
from an institution to a community-based residence does not achieve 
community integration under Olmstead if that person is still denied 
meaningful integrated ways to spend their day and is denied the 
opportunity to do what so many people do--pursue competitive employment 
in the community. And so, in a Federal case in Oregon, we recently 
filed an amicus brief supporting private plaintiffs who asserted that 
Olmstead applies to a situation in which individuals seek integrated 
supported employment services but are instead placed by the State in 
employment settings in which they have little or no opportunity to 
interact with non-disabled workers or to learn valuable skills that 
would assist them in working in competitive employment. In addition, 
our settlement agreements in Virginia and Georgia require the States to 
expand supported employment opportunities for individuals receiving 
services under those agreements; and our findings letters in 
Mississippi and New Hampshire noted a lack of integrated day 
opportunities, including supported employment opportunities, for 
individuals receiving services in the State.
    As I consider the Department's Olmstead accomplishments to date, 
and our plans for the future, I continue to take inspiration from 
people with disabilities, their families and their caregivers. These 
individuals express the harm of segregation and the value of 
integration more eloquently than any lawyer's brief ever could. They 
are the heroes of this civil rights movement. And so, I end this 
testimony with the words of a family member who wrote urging the Court 
to approve our Virginia agreement. This woman, who initially raised her 
son at home, very reluctantly sent him to a State institution for lack 
of community alternatives, and most recently has seen him make great 
strides upon returning to community living, told the Court:

          ``In my view, it is good for all of us to be able to see that 
        people with disabilities are a part of our society and belong 
        to us. We can respect them, admire them, interact with them, 
        have admiration and compassion for some of the challenges they 
        face--and we can be inspired. People with disabilities are part 
        of us--and should not be put in isolation, unseen and 
        unappreciated.''

    The Department of Justice will continue to do all we can to ensure 
that our Olmstead enforcement lives up to these words.
    Thank you.

    The Chairman. Thank you very much, Mr. Perez, for a very 
profound statement.
    Now, we will turn to Henry Claypool.

 STATEMENT OF HENRY CLAYPOOL, PRINCIPAL DEPUTY ADMINISTRATOR, 
ADMINISTRATION FOR COMMUNITY LIVING, U.S. DEPARTMENT OF HEALTH 
               AND HUMAN SERVICES, WASHINGTON, DC

    Mr. Claypool. Chairman Harkin and Ranking Member Enzi, 
thank you for the opportunity to testify before you today.
    Chairman Harkin, I would be remiss if I did not take this 
opportunity to acknowledge your leadership in protecting the 
rights of Americans with disabilities to live independently in 
their communities.
    I would also like to recognize my colleague, Tom Perez, 
when the Olmstead decision was handed down, he served as the 
Director of the Office of Civil Rights at HHS. Today, he leads 
the Nation's Olmstead enforcement efforts at DOJ, and it is a 
privilege to testify with him today.
    In 1995, with the State of Georgia refusing to allow two 
women to live and receive services in the community, Lois 
Curtis filed suit under the name ``Olmstead v. LC.'' The 
Supreme Court ruled on the case in 1999 and today, Lois rents 
her own home, lives a meaningful life as a valued member of her 
community.
    Recognizing that there is still much work to be done, and 
in his first months in office, and on the 10th anniversary of 
the Olmstead decision, President Obama sought to invigorate 
enforcement of Olmstead by announcing the ``Year of Community 
Living.'' This initiative established critical partnerships 
between HHS, HUD, and DOJ and it sparked new activities to help 
individuals with disabilities transition from institutions to 
the community.
    In addition to DOJ's enforcement efforts that Tom just 
outlined, HHS and HUD have developed an unprecedented 
partnership to address one of today's most significant barriers 
to living in the community: the lack of accessible and 
affordable housing for people with significant disabilities.
    Under the leadership of Secretaries Sebelius and Donovan, 
the HUD--HHS partnership has begun to change how housing and 
health care agencies view their relationship with regard to the 
needs of individuals with disabilities. In the initial year of 
the partnership, 5,300 housing vouchers were issued to people 
with disabilities that rely on supportive services. This 
includes nearly 1,000 vouchers that were coordinating rental 
assistance with the long-term services and support that people 
need to live in the community.
    HHS has also worked closely with HUD to improve integration 
in the Section 811 program. Just last month, HUD announced a 
new funding opportunity under this program that now limits the 
number of apartments that can be exclusively set aside for 
people with disabilities to a maximum of 25 percent. This is a 
fundamental shift in housing policy at HUD, bringing a key 
program into alignment with the principles of the ADA, and 
promoting efforts for Medicare to serve people in the most 
integrated setting.
    On March 23, 2010, President Obama signed the Affordable 
Care Act which set forth numerous protections for all Americans 
including people with disabilities, and fills in an important 
piece of the ADA by addressing health care discrimination, and 
improving affordability.
    Of note, the law strengthens the Money Follows the Person 
program which provides States Federal support to help 
institutionalized individuals get out and return to their 
community by expanding the MFP program through 2016, and 
investing an additional $2.25 billion in the program. The 
success of the MFP program can be understood through the story 
of Quentin Hammond.
    Quentin had a brain injury as an infant, and was placed in 
a nursing home for the first 6 years of his life. Thanks to the 
tireless advocacy of his mother, Quentin was able to leave the 
nursing home and move home with his mother and brother. Through 
the Money Follows the Person program, Quentin is receiving 
necessary services and supports to live at home, and today 
attends school.
    And thanks to your leadership again, Chairman Harkin, 
States have another incentive to reduce the institutional bias 
in Medicaid. The Community First Choice option, as you know, 
this program includes Federal Medicaid support for States that 
choose to offer new personal attendant benefit to beneficiaries 
who would otherwise face institutional placement. We anticipate 
several States will adopt this option, helping beneficiaries 
avoid unwanted institutions and bolstering State resources.
    In keeping with the integration mandate of the Americans 
with Disabilities Act, and as required by the Olmstead 
decision, these critical provisions of the health care law 
provide new ways to serve people in home and community-based 
settings.
    The President's ``Year of Community Living,'' critical 
health care improvements thanks to the Affordable Care Act, and 
the need to continue to transform our health care delivery 
system have all culminated in Secretary Sebelius's creation of 
the Administration for Community Living. This new agency 
creates a home within HHS for aging and disability policy and 
programs. Many in the aging and disability community have an 
extraordinary reliance on health care and long-term services. 
Among other activities, the Administration for Community Living 
will work closely with CMS to improve coordination of health 
care services with the essential long-term services and 
supports that help people live in the community.
    We are excited about this new agency and the emphasis it 
places on policies that support community living and community 
integration. We look forward to working with all stakeholders, 
including Congress, in our commitment to ending the very 
discrimination that Lois Curtis experienced in Georgia more 
than 13 years ago.
    Thank you, again, for inviting me to testify today, and I 
look forward to answering any questions.
    [The prepared statement of Mr. Claypool follows:]
                  Prepared Statement of Henry Claypool
    Chairman Harkin, Ranking Member Enzi and members of the committee, 
thank you for the opportunity to testify this morning on the Supreme 
Court's Olmstead decision, and the Department of Health and Human 
Services' (HHS) commitment to ensuring that individuals with 
disabilities can live and participate fully in their communities with 
access to the services and supports they need.
    Chairman Harkin, I would be remiss if I did not take this 
opportunity to acknowledge your leadership in protecting the rights of, 
and advocating for increased opportunities for, Americans with 
disabilities to live as valued and contributing members of their 
communities. Not only did you author the Americans with Disabilities 
Act (ADA) and serve as its chief sponsor in the Senate, but today--
almost 22 years later--you continue to offer unwavering support to 
ensure that Americans with disabilities have full access to society, 
including the right to live independently in their own communities.
    I would also like to take a moment to recognize my colleague, Tom 
Perez. When the Olmstead decision was handed down, he was serving as 
the Director of the Office on Civil Rights at HHS, and helped issue the 
Department's first guidance to State Medicaid directors on how to make 
State programs responsive to and comply with Olmstead. Today, as 
Assistant Attorney General for Civil Rights at the Department of 
Justice (DOJ), he continues to place a high priority on Olmstead 
enforcement, among the many other important civil rights matters at 
DOJ. Thank you, Tom. It is a pleasure to testify here with you today.
    In 1999, the Supreme Court determined in its Olmstead ruling that 
under the ADA, it is discrimination to unnecessarily institutionalize a 
person with a disability who chooses to live in the community with the 
proper services and supports, and does not oppose community placement; 
taking into account the resources available to the State. This 
Administration has made significant strides, as well as key 
investments, toward the day that all Americans with disabilities can 
live in a home of their choosing, accessing the services and supports 
they need and experiencing the dignity and respect that comes with the 
opportunity to fully participate in all aspects of our communities.
    Before I share with you some of the key investments and 
achievements the Department of Health and Human Services has made in 
recent years to ensure that individuals with disabilities can achieve 
their right to live fulfilling, healthy lives in the community, I first 
want to take a moment and recognize where we started.
    In 1967, the number of individuals with intellectual and 
developmental disabilities living in institutions reached the peak of 
nearly 195,000 on an average day.\1\ While that number had dropped to 
about 60,000 \2\ by the mid-1990s, there were still many individuals--
including Lois Curtis and Elaine Wilson--who were living in 
institutions and wanted to live freely in their communities. In 1995, 
with the State of Georgia refusing to allow the women to live and 
receive services in a more integrated, community-based setting, Lois 
and Elaine filed suit, under the name Olmstead v. LC and EW. Today, 
Lois rents her own home and is finally able to live a meaningful life, 
contributing as a member of society through creating and selling art.
---------------------------------------------------------------------------
    \1\ Statistic comes from http://rtc.umn.edu/docs/risp2010.pdf, p. 
12.
    \2\ Statistic comes from http://rtc.umn.edu/docs/risp2010.pdf, p. 
12.
---------------------------------------------------------------------------
                        year of community living
    Recognizing that there is still much work to be done, in his first 
months of office President Obama sought to focus on the goals of the 
Olmstead decision by announcing the ``Year of Community Living.'' 
Announced on the 10th anniversary of the decision, this initiative 
established critical partnerships between three Departments of the 
Federal Government and has sparked new activity to help individuals 
with disabilities transition from institutions into the community. 
Specifically, in this signature disability initiative, the President 
called for an unprecedented partnership between HHS and the Department 
of Housing and Urban Development (HUD) to address one of the most 
significant barriers to living in integrated settings: accessible and 
affordable housing for those living with a disability who want to live 
in the community.
    Under the leadership and direction of Secretary Sebelius and 
Secretary Donovan, our agencies meet regularly to identify and 
implement strategies that address the coordination of long-term 
services and supports with accessible and affordable housing, 
particularly for individuals at risk of institutionalization. In the 
initial year of the partnership between HHS and HUD, the coordination 
of $40 million in Section 8 housing choice vouchers made it possible 
for 5,300 people with disabilities, who rely on supportive services to 
live in the community, to access affordable housing across the country. 
This includes nearly 1,000 vouchers designated for individuals 
transitioning to community-based services and supports through the 
Federal Money Follows the Person program.
    The awarding of nearly 1,000 vouchers was a deliberate effort by 
HHS and HUD to coordinate rental assistance, health care and other 
supportive services to support to this population and help States 
comply with Olmstead. For States that are actively working to comply 
with Olmstead and re-balance their Medicaid long-term services and 
supports programs to increase the emphasis on providing services in 
home and community-based settings instead of institutional settings, 
the lack of affordable and accessible housing remains a significant 
barrier to people with disabilities seeking to realize their right to 
live in the most integrated setting. The HHS-HUD partnership has begun 
to change how the housing and health care agencies at the State and 
Federal level view their relationship with regard to the needs of 
individuals with disabilities--a population they are both charged with 
serving.
    We have seen how this type of partnership and innovation affects 
individual lives. Three years ago, a mother of two named Sonia was 
crossing the street when a car hit her, put her in a coma for 5 months, 
and left her with the left side of her body paralyzed and in a nursing 
home separated from her children. Last June, she received a housing 
voucher and services under the Money Follows the Person program, 
allowing her to return home. Today she can support and play with her 
children, go to job training, and participate in her community.
    Moreover, HHS has also worked closely with HUD to implement changes 
to improve integration of HUD's Section 811 Program, which is designed 
to develop and subsidize rental housing for very low-income adults with 
disabilities. Last month, HUD announced a new $85 million funding 
opportunity under the Section 811 program for State housing agencies 
that meet new eligibility criteria, including having a partnership with 
a State health and human services agency and Medicaid agency, to 
provide essential supports and services that help people live in 
integrated settings in the community. This funding opportunity works to 
align critical health and housing services, and aims to assure 
integration by setting the number of apartments that can be exclusively 
set aside for people with disabilities at 25 percent. This is a 
fundamental shift in housing policy at HUD and brings the Section 811 
program into alignment with the principles of the Americans with 
Disabilities Act and promotes Medicaid efforts to serve people in the 
most integrated setting appropriate to their needs.
    The reinvigoration of the efforts by the Department of Justice to 
enforce the Olmstead decision was the other component of the 
President's ``Year of Community Living.'' The testimony of Assistant 
Attorney General Perez outlines the steps taken by DOJ to ensure that 
States understand how they can comply with the ADA when they use 
Medicaid to provide long-term services and supports. HHS has worked 
closely with DOJ on matters related to Olmstead. Specifically, HHS' 
Office for Civil Rights (OCR) partners with DOJ to enforce the ADA and 
the Olmstead decision. For example, in 2008, OCR entered into a 
voluntary resolution agreement with the State of Georgia to resolve 
Olmstead complaints regarding the State's mental health and 
developmental disabilities systems. The State failed to comply with the 
agreement and DOJ initiated litigation. In October 2010, OCR, DOJ and 
the State of Georgia signed a comprehensive settlement agreement that 
will ensure that thousands of people with disabilities will receive 
community services instead of institutional care. OCR continues to 
resolve Olmstead complaints, often working with people with 
disabilities, families, advocates, State agency officials, and other 
HHS agencies to ensure that individuals can remain in the community 
without risk of institutionalization and have the opportunity to 
transition to the community from an institutional setting.
    To organize and coordinate efforts at HHS related to the 
President's ``Year of Community Living,'' Secretary Sebelius created 
the Community Living Initiative. This facilitated a cross-agency 
workgroup that met to discuss key issues related to community living 
and the infrastructure of the home and community-based services 
delivery system. Along with access to affordable housing, the 
initiative addressed the needs of the workforce that provides 
community-based services and supports, providing new opportunities to 
make community-based services available under the Medicaid program, and 
explored how gathering better data related to disability could enhance 
the quality of these home and community-based services. Historically, 
the approach to defining home and community-based services has been 
exclusively focused on defining services and settings against the 
framing of ``not an institutional setting'' instead of defining the 
positive and necessary elements that create a home in the community. 
The cross-agency workgroup's work on person-centered planning and self-
direction was incorporated into the Community First-Choice and the 
1915(i) State Plan Home and Community-Based Services rulemaking, which 
has helped inform the agency's current effort to define the locations 
in which Medicaid recipients are receiving coverage for home and 
community-based services.
    Finally, in addition to the Community Living Initiative, Secretary 
Sebelius formed an HHS Coordinating Council, bringing together multiple 
HHS agencies and offices and asking them to coordinate their efforts to 
build and strengthen home and community-based services. Workgroups have 
been formed to address issues such as affordable housing, building the 
home and community-based workforce, improving employment supports, and 
enhancing access to services. Discussions in these intra-
departmental conversations inform HHS' work internally and its 
engagements with other agencies that are part of the Community Living 
Initiative.
                          affordable care act
    On March 23, 2010, President Obama signed the Affordable Care Act, 
which set forth numerous protections for all Americans, including 
people with disabilities, filling in an important piece of the ADA by 
addressing healthcare discrimination and improving access and 
affordability.
    Thanks to the new healthcare law, people like Tina from Michigan 
have more control and access over their healthcare. Tina has epilepsy 
that requires consistent monitoring and care. After graduating from 
college at the age of 22, Tina could find a job, but she couldn't find 
health insurance except for a very limited policy that did not meet her 
needs. Now, because of the Affordable Care Act, Tina--who is now 24 
years old--can stay on her family's health insurance plan until she is 
26, which not only provides great coverage but also includes the 
doctors who know her, understand her epilepsy, and whom she trusts.
    Moreover, starting in 2014, Tina and other people with disabilities 
will be protected by the law's prohibition on some insurance companies' 
egregious practices of denying benefits or charging more to any person 
based on their medical history. For children younger than age 19, the 
law has already gone into effect, and insurance companies can no longer 
discriminate and deny coverage based upon pre-existing conditions for 
children and youth.
    Not only does the Affordable Care Act expand access to health 
coverage, but also it expands affordability for many low-income 
individuals, including many people with disabilities. Specifically, 
starting in 2014 the new health care law includes a Medicaid program 
expansion that will reach more Americans, including some people with 
disabilities. This expansion will cover many low-income people with 
disabilities who do not currently meet the Social Security 
Administration's definition of disability.
    Another critical aspect of the Affordable Care Act are the 
provisions that address long-term services and supports, including re-
balancing Medicaid investments from institutions to home and community-
based services. Specifically, the law strengthens the Money Follows the 
Person (MFP) program, which provides States significant Federal support 
to help institutionalized individuals get out of their institutions and 
return to their homes or other community settings, which in almost all 
cases substantially improves their quality of life. By extending MFP 
through 2016 and investing an additional $2.25 billion in funding, the 
program will build on its successes to date, which in the past 5 years 
has helped 20,000 individuals leave institutions for the community. 
Today, 43 States and the District of Columbia are participating in MFP, 
and the renewed commitment toward MFP in the Affordable Care Act means 
that thousands more can leave institutions and live where they want 
with the services that they need.
    The successes of this program can be understood through the story 
of Quentin Hammond. After a traumatic brain injury as an infant, 
Quentin lived in a nursing home for the first 6 years of his life, 
where he was not engaged at his fullest potential. He was misdiagnosed 
as being blind and non-responsive. However, thanks to the Money Follows 
the Person program and the tireless advocacy of his mom, Quentin was 
able to leave the nursing home and move home with his mom and little 
brother, receiving the necessary services and supports so that he got 
the same high-level of care. Quentin now attends school and is learning 
to communicate. His quality of life has improved tremendously.
    This critical choice to be able to live in one's own home, and have 
access to the medical services and supports they need, are the exact 
kinds of rights that the Affordable Care Act gives Americans, 
especially Americans with disabilities.
    In addition to strengthening the Money Follows the Person program, 
the Affordable Care Act gives new incentives for States to offer home 
and community-based long-term services and supports as an alternative 
to institutions. Under the Balancing Incentive Program, $3 billion in 
enhanced Federal Medicaid matching funds are available to States that 
make structural reforms to increase nursing home diversions and access 
to non-institutional long-term services and supports. In March 2012, 
New Hampshire and Maryland were the first States to receive this new 
funding; and Georgia, Iowa, Mississippi, and Missouri have all since 
been approved to participate in the program as well.
    States have an additional incentive to reduce the institutional 
bias in Medicaid through the Community First-Choice program, which 
increases Federal Medicaid support for States that choose to provide 
home and community-based attendant services to Medicaid beneficiaries 
otherwise facing institutional placement. In addition to receiving a 
broad range of services, Community First-Choice recipients must have 
their self-determination supported through the opportunity to develop a 
person-centered plan that allows the individual to determine how 
services are provided. The Community First-Choice benefit will further 
assist Medicaid beneficiaries in avoiding unwanted institutional 
placement while at the same time providing States with more resources 
to support this work.
    Finally, the Affordable Care Act makes investments to integrate 
care delivery under Medicaid and Medicare for dual eligibles. Often, 
people with disabilities are beneficiaries under both programs, 
creating the need for care coordination and management across these two 
programs. Done right, the integration of these two programs can improve 
access to essential health care services and promote enhanced access to 
long-term services and supports, which can help avoid unnecessary 
hospitalization and institutionalization for people with disabilities, 
and at the same time lowering costs to our Nation's healthcare delivery 
system.
    In keeping with the integration mandate of the Americans with 
Disabilities Act, and as required by the Olmstead decision, these 
critical provisions of the health care law provide new ways to serve 
more people in home and community-based settings.
                  administration for community living
    The President's Year of Community Living, the Secretary's Community 
Living Initiative, critical improvements thanks to the Affordable Care 
Act, and the pressing need to continue to transform our health care 
delivery systems, have all culminated in Secretary Sebelius' creation 
of the Administration for Community Living.
    Today, I serve as the Principal Deputy Administrator of the 
Administration for Community Living, as well as Senior Advisor to the 
Secretary for Disability Policy. Kathy Greenlee maintains her role as 
Assistant Secretary for Aging, while also serving as the Administrator 
of the new agency.
    The establishment of the Administration for Community Living 
creates a single agency charged with developing policies and improving 
supports for seniors and people with disabilities by bringing together 
the key organizations and offices focused upon these populations. The 
agency builds upon this Administration's work to promote the goals of 
the Americans with Disabilities Act: to assure equality of opportunity, 
full participation, independent living, and economic self-sufficiency 
for individuals with disabilities. We are committed to improving the 
broad range of supports that individuals may need, focusing on 
populations that have an extraordinary reliance on health care and 
long-term services and supports. Ultimately, the integration of the 
health care system and the long-term services and supports systems is 
essential to the health and well-being of millions of Americans with 
disabilities and seniors that have functional support needs.
    The Department's efforts to better align the Medicare and Medicaid 
programs hold great promise to improve the health of those eligible for 
both programs, such as younger adults with disabilities and seniors who 
have chronic health conditions and functional support needs. To that 
end, the Administration for Community Living will work closely with the 
Centers for Medicare & Medicaid Services to advance its alignment 
efforts directed to the population jointly served by the two agencies. 
The potential for better coordination of health care and crucial 
community-based services and supports will be an area of emphasis for 
the new agency.
    We realize that we are serving diverse populations, including frail 
elders, individuals with physical disabilities, and those with 
intellectual and developmental disabilities across the life-span. 
Representing the voice of each of the populations served is core to the 
work of the entities coming together under the Administration for 
Community Living. This will continue with an increased strength through 
a unified mission while still acknowledging the unique needs and 
attributes of each group. However, these communities share a common 
vision--that all Americans should have the right to live in a home of 
their choosing, with people whom they care about, that is integrated 
into a community that values their participation and their 
contributions--and the Administration for Community Living will work to 
support that vision.
    We also know that community living relates to more than where 
people live. Integration requires the availability of appropriate 
supports including opportunities in health care, housing, employment, 
education, childcare, and social participation for people with 
disabilities and older Americans. The Administration for Community 
Living will take a holistic approach to meeting the community living 
needs of people with disabilities and older Americans.
    We are excited about this realignment and the renewed focus the 
development of the Administration for Community Living has placed on 
community living and community integration at HHS and across the 
Administration. At the Department of Health and Human Services, we look 
forward to working internally, with other agencies across the 
Administration, with Congress, and with the public at large to advance 
policies that support community living and ensure that those who have 
been harmed by discrimination, like Lois Curtis, can pursue their 
passions living in the community.
    Thank you again for inviting me to testify and at this time I would 
be happy to address any questions.

    The Chairman. Thank you very much, Mr. Claypool.
    Both of you, thank you for your long-time leadership on 
this issue. You have just been, both been, stalwarts and I 
cannot thank you enough.
    We will start a 5-minute round of questions here. Mr. 
Perez, you mentioned about the sheriff saying the jails are now 
our mental health places. I have had the same thing happen to 
me in Iowa, too; come to me saying, ``You have got to do 
something, because there are people here that should not be in 
the jail.'' They need to be out in the community, they need 
supportive services, but they just do not have the wherewithal 
to do that. We are getting a lot of input, I know, from our law 
enforcement people around the country on this.
    But there are a couple of questions I want to ask both of 
you. First of all, two parts. No. 1, it just frustrates me to 
no end that I keep hearing from parents who have children or 
young adults with disabilities. They want them in community 
settings. They want to get them out of an institution, but they 
are worried about, ``What happens when I die?'' They are 
worried about the long term. They might see it now but, ``Can 
you guarantee me that this is going to be there 20 years from 
now?'' that type of thing.
    Please address that issue, give me some idea of what things 
do we need to do, to put in place the structures that will meet 
the test of time.
    The second part of the question is that you both alluded to 
the stovepipes that are out there. I think Mr. Perez made that 
statement ``stovepipes''. This new Administration for Community 
Living is crossing over into different agencies, and one of the 
things you are talking about is affordable housing which is 
critical--critical--for people with disabilities.
    Talk a little bit about, both of you, this long-term plan 
and how we set structures in place. And second, how satisfied 
are you with the fact that you are now getting into different 
agencies, HUD and everybody else, working together on housing 
and supportive services; those two elements.
    Mr. Perez. I think as to your first question, Mr. Chairman, 
it is so important to learn from the past.
    The institutionalization movement of the 1970s, the 
profound mistake that was made was opening the doors of 
institutions when the community infrastructure did not exist. 
And as a result, when you hear the sheriffs in Wyoming and in 
Iowa telling you that, ``My facility is the largest mental 
health facility in my area,'' that is because we did not plan 
for it as a Nation and as communities.
    If you look at our agreements--and Secretary Landgraf can 
talk about it in the mental health context, as well as the 
witness from Alabama--we are building community infrastructure, 
assertive community treatment teams, crisis intervention, a 
short-term bed so that if an officer encounters a person who is 
clearly in crisis, the choices are not simply the emergency 
room or the jail. You have these other options in place in the 
community.
    Having that robust infrastructure in place is, I think, a 
key to addressing the question I hear so often from parents, 
``I am 70 years old and my son, or daughter, or niece, or 
nephew, is 48. I am not going to be around forever. What is 
going to happen with them?'' I think we owe it to them to build 
that community infrastructure. I think we know a lot about what 
that infrastructure needs to have.
    And if you look at the building blocks of our agreements in 
Virginia, and Delaware, and elsewhere, Georgia, what you will 
see is what we spent in Virginia, we spent 5 months talking 
about quality assurance, because if I cannot look you in the 
eye as a government official and say, ``Your loved one is going 
to be cared for in a safe environment,'' then I have no 
business being in this business. That is what we have spent so 
much time working on. And you see there are all sorts of 
quality assurance mechanisms built-in to our agreements because 
we have to make sure we have that infrastructure.
    Governor Perdue in Georgia, invested something like $500 
million over the course of a few years in a tough fiscal 
environment because they recognized that you have to think long 
term when you are thinking about these issues.
    I think we have a blueprint that can work, that learns from 
our mistakes, and can move forward.
    As to your second question, I am a firm believer that the 
most vexing public policy questions that we confront here at 
the Federal level are those through which unprecedented levels 
of interagency collaboration are required. If you help a person 
with a disability get a job, but then they lose the health 
insurance that they have been getting, it is a Pyrrhic victory. 
We have to have one agency talking to the other.
    If we help a person get into a community-based setting, but 
we cannot insure that the housing and the transportation is 
there so they can get to a job, then we have not--they are all 
links on a chain, and every link has to be there.
    That is why, for instance, in the employment setting, an 
issue I know is one of many that is near and dear to your 
heart, we met literally within the last 2 weeks--convened by 
Deputy Secretary Harris--HHS, DOJ, DOL, and the EEOC to talk 
about: how can we ensure that integrated supportive employment 
becomes the norm and sheltered work-shops become increasingly 
the exception? Because that is what the integration mandate is 
about; it is not just where you live, it is how you live.
    I think those stovepipe implosion initiatives are beginning 
to bear fruit, and I hope they will continue because that is 
how you solve these problems. You do not just sit here at the 
Department of Justice and figure out, how do you sue them? You 
have to figure out, how do you solve them?
    We have had many willing Governors, and I want to 
underscore that. I mean, I have great respect for the 
leadership of Governor McDonnell on this issue in Virginia, for 
Governor Perdue in Georgia, for Governor Markell in Delaware. 
They all came to the table in good faith. And they recognized 
in Delaware that spending $200,000 of State-only dollars to 
treat someone in a State institution, no Federal reimbursement, 
is not cost-effective among other things, aside from not the 
best way to do it.
    I think we can do it. I think we have a blueprint. I think 
we are implementing blueprints and we are learning from those 
blueprints. We learn from our mistakes and we try to get 
better.
    The Chairman. Thank you very much, Mr. Perez.
    Mr. Claypool, anything to add? My time has run out.
    Mr. Claypool. I think your questions are very poignant and 
in some way, they are almost answered together.
    But the infrastructure, I think the record is replete with 
our efforts to make investments in the home and community-based 
delivery system. They are bipartisan and they extend back to 
the Olmstead decision. You have Money Follows the Person 
passing with the Deficit Reduction Act in 2005. You see it 
again affirmed in the Affordable Care Act and the investments 
made there.
    So there is clearly an effort to move the Medicaid program 
in this direction toward building the community-based 
infrastructure that Tom has mentioned, and really making some 
solid investment so that people can lead quality lives there. 
We continue to push forward on those efforts with these 
investments.
    But really the second part of your question about the 
partnerships that we have are critical to making sure that the 
quality experience that people have living in the community is 
held up. Without HUD and HHS working together and better 
understanding how the programs can synchronize with each other 
to support an individual, we will not get there. But as we can 
see, the stovepipe implosion is already underway. These 
barriers are breaking down, and I just do not think we can turn 
back.
    It is becoming increasingly apparent that the individuals 
that are relying on HUD services, especially those with 
disabilities, often have supportive services needs. And finding 
new ways for housers to understand how they can work with 
partners in health care agencies is just essential.
    And to that end, we have been working with CMS to make sure 
that we are holding forums across the country where we can 
really introduce, not just at the Federal level the HUD staff 
to the HHS staff, but at the State and local level, building 
these partnerships to make sure that these two are working 
together and making sure that there is an infrastructure 
available to support people. And that it is a quality 
infrastructure, and that we need not look to institutional 
settings to reassure family members that this is their only 
alternative.
    Senator Enzi. Thank you, Mr. Chairman.
    Mr. Perez, the Department of Justice's oversight and 
enforcement efforts seem largely focused on the States' 
Medicaid program.
    Are you investigating the enforcement of the Olmstead 
compliance beyond the Medicaid program, for example, meeting 
with Medicare or with the Veteran's Affairs program?
    Mr. Perez. Our enforcement program certainly overlaps 
significantly with Medicaid because many of the populations at 
risk are receiving Medicaid dollars, but it is certainly not 
limited to that.
    We have actually begun a number of conversations with the 
Department of Veterans Affairs because we have many service 
members with disabilities returning home, and we want to make 
sure that they, too, receive care and treatment in the most 
integrated setting appropriate to their needs.
    In addition, we have cases involving nursing homes. We have 
a case in Texas involving people in nursing homes, so our focus 
has really been expansive. We have a lot of cases in the 
developmental disability setting, in the mental illness 
setting, but we also have cases involving nursing home care.
    I am really glad, Senator Enzi, that you brought up the VA 
issue because we really want to make sure that our vets 
returning home who have serious disabilities are, indeed, 
treated in the most integrated setting. That is certainly an 
area of renewed focus in the last year.
    Senator Enzi. So that is a relatively new initiative, then?
    Mr. Perez. I would agree with that.
    Senator Enzi. And you mentioned Virginia, and Delaware, and 
Georgia frequently.
    Mr. Perez. Yes.
    Senator Enzi. How did you decide to concentrate on those 
States?
    Mr. Perez. Well, in all of those States, we had information 
that led us to be very concerned that there were violations. 
They are not the only States where we have concerns.
    As I mentioned, we have been involved in one way, shape, or 
form in about 25 States in about 40 different matters. We have 
attempted in our work to come up with some evidence-based 
metrics to determine which States are unduly institutionally 
reliant, and Mississippi is an example.
    Mississippi is one of the most institutionally reliant 
States in the country, and I would observe that they are a 
State that is probably leaving, as much as anyone, the most 
Federal dollars on the table because they are eligible for a 
number of enhanced matches under Medicaid given the nature of 
the populations that they are serving, and other indices. When 
we looked at that and saw the level of unnecessary 
institutionalization, that was certainly what brought us into 
the State of Mississippi.
    Senator Enzi. So they have been passing up on some 
resources.
    Mr. Perez. They sure have.
    Senator Enzi. What kind of limitations are there on State 
resources that you are running into?
    Mr. Perez. Certainly State budget limitations are 
undeniably an issue that we confront from time to time.
    What we want to make sure, and what we have done working 
with States, is to make sure that they are making 
individualized determinations, as opposed to kind of blanket, 
across-the-board cuts because many of the cuts, aside from 
implicating the ADA potentially, can be actually cutting off 
your nose to spite your face.
    By that I mean if someone is in a community, is receiving 
community services which are undeniably less expensive and you 
cut those services, and then that person goes into an 
institution, you are going to be on the hook for far more 
dollars. We really try to work hard to educate and prevent.
    And in the budget context, we really tried to do just that 
because some of the proposed cuts have been--I can understand 
why; the necessities. I worked in State government. I worked in 
local government. I have an acute appreciation for the budget 
woes, but you need a scalpel not a sledgehammer, and sometimes 
the use of a sledgehammer not only has perverse fiscal impact 
by making it more expensive, but it can have ADA implications.
    Senator Enzi. Yes. I would followup more on that, but now I 
want to ask Mr. Claypool.
    You have been working with this consolidation of the 
Administration on Aging and the Office of Disability 
Administration into a single new agency, and the supports go 
well beyond health care. You mentioned appropriate housing, I 
think you mentioned employment education, meaningful 
relationships, and social participation.
    How are you specifically engaging with HUD, and other 
agencies, to support that goal for enforcement?
    Mr. Claypool. Thank you for the question.
    The Secretary has just created the Administration for 
Community Living, so I will not have a full answer to the 
extent of which partnerships that we will develop over time, 
but I certainly can identify some really solid starting points.
    One of them, and just in terms of, you have acknowledged 
that the aging and disability agencies are coming together 
within the Department, and that is an important first step, 
making sure that we are looking at the needs of people with 
disabilities, as well as older Americans when we address issues 
like access to transportation. It is critical that we view 
these together, and that we look for opportunities to move 
forward where the needs are the same. Of course, we see that in 
housing as well.
    You have mentioned the VA, and I thought this might be an 
opportunity to highlight one of the initiatives that the 
Administration for Community Living has already released.
    We have created a partnership with HHS and with the VA 
where basically in our partnership with CMS, we are creating an 
enhanced front door to Medicaid long-term care services. Making 
sure that people understand what their options are when they 
are looking for these long-term care services, so that people 
do not unnecessarily end up in a nursing home, and part of this 
new initiative involves a collaboration with the VA.
    We are working with them, and they are working closely at 
the State and local level with the aging infrastructure, with 
the area agencies on aging, to provide a new service, which is 
called VA's Home and Community Based Services Delivery System. 
It basically allows vets that would otherwise have to rely on 
an agency or perhaps even an institution for the long-term 
services and the supports they need to hire whomever they 
choose. It might be a family member, it might be someone in 
their community to provide those types of basic, personal 
supports that they need in their home, allowing the vet to 
really return right back to the environment where they can best 
pursue their rehabilitation and community integration.
    It is partnerships like these that are really essential to 
making sure that the Administration for Community Living 
realizes its very ambitious goal of living up to the values of 
the ADA, and the important principle of community integration.
    Senator Enzi. Thanks to both of you.
    Mr. Perez. Thank you both.
    The Chairman. Thank you both very much.
    A lot of different streams are starting to come together. 
Last year, the U.S. Chamber of Commerce made a commitment to 
work with all their member companies in the United States to 
increase employment of people with disabilities by 1 million by 
2015. So that is happening.
    There are interesting things happening in the private 
sector. We had a meeting in Connecticut a couple of weeks ago. 
It was fantastic. It was sponsored by Walgreens; the CEO was 
there. We had the CEOs of other large corporations--UPS, 
Lowe's, OfficeMax, a lot of different companies were there--and 
we got to see, firsthand, people with disabilities working in 
competitive employment.
    Now this is happening in the private sector because 
Walgreens has shown that people with disabilities can work 
alongside people without disabilities, you cannot tell who is 
who and which is which. And it is not that they are doing it 
out of some goodness of their heart. They are doing it because 
it helps their bottom line, and these people are more 
productive. They show up to work on time, they do their jobs, 
and so I see this now starting to spread around the country.
    What we have to be prepared for is the other elements of 
transportation, housing, some supportive services for people 
like that. Then they can get into competitive employment. So I 
see these things kind of coming together. I would hate to see 
the private sector moving ahead on this, hiring people with 
disabilities, but the people with disabilities cannot get to 
work, or they have some element of their life that will not 
permit them to get to work because they need something in the 
morning to get them going, or something like that, some 
intervention to help them get to work, or after work, or 
something like that.
    Again, I think we are at a point now where all of this is 
kind of coming together, and that is why I like this idea of 
breaking down the stovepipes, working with HUD, working with 
all these different people, working with State Governors to 
help put these things in place so that we have a fully 
integrated system.
    I did not mean to go off so long, but Senator Franken is 
here. Did you want to have a question?
    [Inaudible.]
    Thank you both very much. We will now call our second 
panel.
    Our first witness is Rita Landgraf, currently Secretary of 
the Delaware Department of Health and Social Services. For more 
than 30 years as the executive director of the ARC of Delaware, 
and the National Alliance on Mental Illness in Delaware, and 
president of AARP Delaware, she has been a leader on 
disability, health care, and aging issues.
    Our second witness is Zelia Baugh. Miss Baugh is the 
commissioner of the Alabama Department of Mental Health. 
Commissioner Baugh has led Alabama's efforts on Olmstead 
compliance by increasing community-based options for 
individuals who were at institutional settings, and focusing on 
home and community-based services. And we have heard a lot 
about the good work that is being done in Alabama.
    Our final witness is Mr. Ricardo Thornton. Mr. Thornton is 
a former resident of Forest Haven, which was the District of 
Columbia's institution for people with developmental 
disabilities. Since leaving there, Mr. Thornton has been a 
strong advocate for increasing home and community-based 
opportunities for people with disabilities. He speaks 
internationally on deinstitutionalization, advocacy, human 
rights, and Special Olympics, and is a mentor and advocate for 
people with disabilities in the District. He is married, and is 
a father and a grandfather.
    Welcome to you all. Your statements will be made a part of 
the record in their entirety. We will go from left to right. If 
you could sum it up in 5 to 7 minutes, I would appreciate it.
    Miss Landgraf, please proceed.

 STATEMENT OF RITA M. LANDGRAF, SECRETARY, DELAWARE DEPARTMENT 
         OF HEALTH AND SOCIAL SERVICES, NEW CASTLE, DE

    Ms. Landgraf. Thank you, Mr. Chairman and Ranking Member 
Enzi.
    I am so honored to testify before you today about the 
progress being made on advancing community inclusion for 
individuals with disabilities.
    My role in public service is mainly due to my role as a 
lifelong advocate in the area of disabilities, health care, and 
senior issues. As you heard, as former executive director of 
the ARC of Delaware, as executive director of the National 
Alliance on Mental Illness in Delaware, and as president of 
AARP in Delaware, I do not believe it is enough for us to be in 
mere compliance with the Americans with Disabilities Act and 
the Olmstead ruling, but we as State leaders must embrace the 
intent of the law beyond the compliance, and embed inclusion 
and the benefits of diversity as a core value. We must engage 
our partners across the Federal, State, and local government, 
and be inclusive of individuals with disabilities as we develop 
best practice policy and implementation.
    This is not merely meeting the objectives of enforcement or 
a settlement agreement. It is about systemic reform that 
enables services to meet the desires of the market, to live 
ordinary lives with identified support. Our State and Federal 
systems need to ensure that our services adhere to these goals 
that many of us take for granted.
    We know that States, CMS, and disability advocates are 
beginning to evolve to a new understanding of the Olmstead 
community integration mandate. The fundamental question is how 
government resources can support a quality of life for people 
with significant disabilities, eligible for Medicaid funding 
that enhances full community participation, independent living, 
and economic self-sufficiency.
    Today in Delaware, it is a value that we are committed to 
extending across the State through meaningful systemic reform 
that promotes integration of individuals with disabilities in 
our society. Our Governor, Governor Jack Markell, is committed 
to this priority bringing the full weight of his office and the 
political will to accomplish this restructuring. However, the 
Delaware system has not evolved dramatically since the passage 
of ADA in 1990 and since the 1999 reaffirmation of the 
integration mandate by the Olmstead ruling.
    For decades in Delaware, the State has had an over-reliance 
on facility-based care and options within community have been 
limited to mid- to small-group living homes. Far too many 
individuals were placed in institutions and remained there for 
extended periods. Since 2009 under the Markell administration, 
we have focused on shifting our resources and our delivery 
strategy to a community first focus. Communities should be the 
norm, not the exception.
    The level of reform Delaware is addressing for individuals 
with serious, persistent mental illness is seen by us as the 
prototype for all with disabilities and the aging population in 
need of supports. It begins with a simple, but powerful 
expectation: individuals with disabilities can live in their 
own home, have meaningful employment, and be ordinary 
Delawareans. They may require some level of support, but those 
supports need to be provided that effectively foster 
independence and fully engaged participation in society.
    A pivotal benchmark for Delaware to excel in our commitment 
to meaningful reform is the July 6, 2011 settlement agreement 
between the State and the U.S. Department of Justice which 
resolved a 3-year investigation of the Delaware Psychiatric 
Center. More importantly, the agreement became the blueprint 
for how Delaware will provide mental health services for 
individuals with severe and persistent mental illness and, 
indeed, creates the prototype for systemic reform across 
government.
    In order to comply with the agreement, the State must 
prevent unnecessary institutionalization by offering agreed 
upon community-based services to the target population with 
serious, persistent mental illness who are at the highest risk 
of institutionalization. And we are engaging in the development 
of upgraded community supports and services. We want to make 
our State a leader in mental health services, and the U.S. DOJ 
shares our vision.
    Given our State's fiscal challenges, the need for smarter 
budgeting, smarter spending, and smarter management that must 
take center stage if we are to achieve meaningful integration, 
we need to embrace the philosophy of community-based living. 
But without the re-balancing and flexibility of our funding 
system, the system will remain vulnerable to stagnation and 
erosion.
    The Department is focused on the development of a quality 
assurance program that incentivizes payments based on outcomes 
as they relate to the promises of Olmstead and the ADA, and not 
funds for sheer volume. As a State, we are focused not only on 
supporting individuals moving out of the Delaware Psychiatric 
Center and into the community, but are actively assessing all 
within our State facilities, and asking if they want to return 
to their communities, and we are assisting them in doing so.
    The underlying support for full community participation 
must be a focus on financial capability and advancing economic 
self-sufficiency. The Olmstead community integration mandate 
compels us to attack poverty and financial instability through 
financial coaching as part of an individual's Medicaid support 
plan. In Delaware, we use our government infrastructure to 
reset the focus to change thinking and behavior about financial 
capability through an integrated system of supports that 
enhance financial empowerment, skills, and outcomes.
    I believe we also need ADA--Olmstead Ambassadors throughout 
the States to promote the premise behind the civil rights 
movement, and institute a broad education campaign. States must 
incorporate this awareness throughout their delivery system and 
in all areas of the cabinet to fully support the civil rights 
of individuals with disabilities as a core value.
    In closing, permit me to share with you my early lesson on 
inclusion. My path here today began when I was 12 years old 
when a young neighbor, Mike, who had an intellectual disability 
ventured out into our community to befriend us. What Mike 
wanted was to be included with his peers and be a part of our 
group. What he encountered was ridicule at his expense. The 
memory still weighs heavy on my mind and my heart. I did not 
tease Mike, but I did nothing to stop the others.
    That haunting look on Mike's face changed my life forever, 
and I committed myself to working toward a system that educates 
and promotes diversity and inclusion. Mike on the red bike 
taught me my first lesson on the value of inclusion. I saw Mike 
a few years back and he told me that he now drives a car, works 
at a farmer's market, and is married. He is an ordinary 
Delawarean, a full community member, and he was smiling 
broadly. I told him that he was also a great teacher. 
Individuals with disabilities are our greatest teacher. We need 
to listen.
    Thank you for the opportunity to testify, and I look 
forward to your questions.
    [The prepared statement of Ms. Landgraf follows:]
                 Prepared Statement of Rita M. Landgraf
                                summary
    Mr. Chairman and members of the committee, I am honored to testify 
before you today about the progress being made on advancing community 
inclusion for individuals with disabilities. My name is Rita Landgraf 
and I am the Cabinet Secretary for the Delaware Department of Health 
and Social Services or DHSS. My role in public service is mainly due to 
my role as a lifelong advocate in the areas of disability, health care 
and senior issues, including as the former executive director of The 
Arc of Delaware and the National Alliance on Mental Illness in 
Delaware, and president of AARP Delaware.
    I do not believe, it is enough for us to be in mere compliance with 
the Americans with Disabilities Act and the Olmstead ruling, but we, as 
State leaders, must embrace the intent of the law beyond the compliance 
and embed inclusion and the benefits of diversity as a core value. We 
must engage our partners across the Federal, State and local 
governments, and be inclusive of individuals with disabilities as we 
develop best practice policy and implementation. This is not merely 
meeting the objectives of enforcement or a settlement agreement. It is 
about systemic reform that enables services to meet the desires of the 
market to live ordinary lives with identified supports. Our State and 
Federal systems need to ensure that our services adhere to these goals 
that many of us take for granted.
    We know that States, CMS, and disability advocates are beginning to 
evolve to a new understanding of the ``Olmstead Community Integration 
Mandate.'' The fundamental question is about ``how government resources 
can support a quality of life for people with significant disabilities 
(eligible for Medicaid funding) that enhances full community 
participation, independent living and economic self-sufficiency.''
    Today, in Delaware, it is a value that we are committed to 
extending across the State through meaningful systemic reform that 
promotes integration of individuals with disabilities in our society. 
Our Governor, Governor. Jack Markell, is committed to this priority, 
bringing the full weight of his office and the political will to 
accomplish this restructuring. However, the Delaware system has not 
evolved dramatically since the passage of ADA in 1990 and since the 
1999 reaffirmation of the Integration Mandate by the Olmstead ruling.
    For decades in Delaware, the State has had an overreliance on 
facility-based care and options within the community have been limited 
to mid- to small-group living homes. Far too many individuals were 
placed in institutions and remained there for extended periods. Since 
2009, under the Markell administration, we have focused on shifting our 
resources and our delivery strategy to a community-first focus. 
Community should be the norm not the exception. The level of reform, 
Delaware is addressing for individuals with serious persistent mental 
illness is seen, by us, as the prototype for all with disabilities and 
the aging population in need of supports. It begins with a simple, but 
powerful expectation:
    Individuals with disabilities can live in their own home, have 
meaningful employment and be ordinary Delawareans. They may require 
some level of support, but those supports need to be provided that 
effectively foster independence and fully engage participation in 
society.
    A pivotal benchmark for Delaware to excel in our commitment to 
meaningful reform is the July 6, 2011, settlement agreement between the 
State and the U.S. Department of Justice which resolved a 3-year 
investigation of the Delaware Psychiatric Center. More importantly, the 
agreement became the blueprint for how Delaware would provide mental 
health services to individuals with severe and persistent mental 
illness, and creates the prototype for systemic reform across the 
government, in support of all individuals with disabilities.
    In order to comply with the agreement, the State must prevent 
unnecessary institutionalization by offering agreed upon community-
based services to the target population, a subset of individuals with 
SPMI (serious, persistent mental illness) who are at the highest risk 
of unnecessary institutionalization and the development of upgraded 
community supports and services. We want to make this State a leader in 
mental health services, and the USDOJ shares that vision.
    Given the fiscal challenges, the need for smarter budgeting, 
smarter spending, and smarter management must take center stage if we 
are to achieve meaningful integration. We need to embrace the 
philosophy of community-based living, but without the re-balancing and 
flexibility of the funding system, the system will remain vulnerable to 
stagnation and erosion. DHSS is focused on the development of a quality 
assurance program that incentivizes based on outcomes as they relate to 
the promises of Olmstead /ADA and not funds for volume. As a State, we 
are focused not only on supporting individuals moving out of DPC and 
into the community, but are actively assessing all within our State 
facilities and asking if they want to return to their community and are 
assisting them to do so.
    The underlying support for full community participation must be a 
focus on financial capability and advancing ``economic self-
sufficiency.'' The Olmstead Community Integration Mandate compels us to 
attack poverty and financial instability through financial coaching as 
part of an individual's Medicaid support plan. In Delaware, we will use 
our government infrastructure to reset the focus to change thinking and 
behavior about financial capability through an integrated system of 
supports that enhance financial empowerment skills and outcomes.
    I believe we need ADA/Olmstead Ambassadors throughout the States to 
promote the premise behind the civil rights movement and institute a 
broad education campaign. States must incorporate this awareness 
throughout the delivery system and in all areas of the Cabinet to fully 
support the civil rights of individuals with disabilities as a core 
value.
    In closing, permit me to share with you my early lesson on 
inclusion:

          My path here today began when I was 12 years old, when a 
        young neighbor Mike who had an intellectual disability, 
        ventured out into our community to befriend us. What Mike 
        wanted was to be included with his peers and be a part of our 
        group. What he encountered was ridicule at his expense. The 
        memory still weighs heavy on my mind and heart. I didn't tease 
        Mike, but I did nothing to stop the others. That haunting look 
        on Mike's face changed my life, and I committed myself to 
        working toward a system that educates and promotes diversity 
        and inclusion. Mike on the red bike taught me my first lesson 
        on the value of inclusion. I saw Mike a few years back and he 
        told me that he now drives a car, works at a farmer's market 
        and is married. He is an ordinary Delawarean, a full 
        participating community member and was smiling broadly. I told 
        him that he was also a great teacher.

    Thank you for this opportunity to testify and I look forward to 
your questions.
                                 ______
                                 
    Mr. Chairman and members of the committee, I am honored to testify 
before you today about the progress being made on advancing community 
inclusion for individuals with disabilities. My name is Rita Landgraf 
and I am the Cabinet Secretary for the Delaware Department of Health 
and Social Services or DHSS. DHSS is the largest State agency, 
employing over 4,000 individuals in a wide range of public service 
jobs. Our department includes 12 divisions, which provide services in 
the areas of public health, social services, substance abuse and mental 
health, child support, developmental disabilities, long-term care, 
visual impairment, aging and adults with physical disabilities, and 
Medicaid and medical assistance. The Department includes four long-term 
care facilities and the State's only psychiatric hospital, the Delaware 
Psychiatric Center.
    Our Department's mission is to improve the quality of life for 
Delaware's citizens by promoting good health and well-being, fostering 
self-sufficiency, and protecting vulnerable populations.
    My role in public service was mainly due to my role as a life-long 
advocate in the areas of disability, health care and senior issues, 
including as the former executive director of The Arc of Delaware and 
the National Alliance on Mental Illness in Delaware, and president of 
AARP Delaware. I am a firm believer in the Supreme Court's Olmstead 
decision and the Americans with Disabilities Act. In other words, I am 
a believer that individuals with disabilities have the same rights as 
all citizens to live in community and it is our responsibility, in the 
public sector, to provide supports to enable them to exercise that 
right in a meaningful and purposeful way.
    I do not believe, it is enough for us to be in mere compliance with 
the ADA--Integration Mandate and Olmstead, but we, as State leaders, 
must embrace the intent of the law beyond the compliance and embed 
inclusion and the benefits of diversity as a core value. We must engage 
our partners across the Federal, State and local governments, and be 
inclusive of individuals with disabilities as we develop best practice 
policy and implementation. This is not merely meeting the objectives of 
enforcement or a settlement agreement; it is about systemic reform that 
enables services to meet the desires of the market to live ordinary 
lives with identified supports. It means embracing and embedding the 
ADA purpose statement (section 12101 (a) (8)):

          The Nation's proper goals regarding individuals with 
        disabilities are to assure equality of opportunity, full 
        participation, independent living, and economic self-
        sufficiency for individuals with disabilities.

    Our State and Federal systems need to ensure that our services 
adhere to these goals that many of us take for granted.
  i. delaware's experience with community integration of people with 
                 disabilities and the olmstead decision
    We know that States, CMS, and disability advocates are beginning to 
evolve to a new understanding of the ``Olmstead Community Integration 
Mandate''. The fundamental question is about ``how government resources 
can support a quality of life for people with significant disabilities 
(eligible for Medicaid funding) that enhances full community 
participation, independent living and economic self-sufficiency?''
    Today, in Delaware, it is a value that we are committed to 
extending across the State through meaningful systemic reform that 
promotes integration of individuals with disabilities in our society. 
Our Governor, Governor. Jack Markell, is committed to this priority, 
bringing the full weight of his office and the political will to 
accomplish this restructuring. However, the Delaware system has not 
evolved dramatically since the passage of ADA in 1990 and since the 
1999 reaffirmation of the Integration Mandate by the Olmstead ruling.
    Unfortunately, for decades in Delaware, the State has had an over 
reliance on facility-based care and options within community have been 
limited to mid- to small-group living homes. Far too many individuals 
were placed in institutions and remained there for extended periods. 
Delaware's institutional bias has been significant. For our State, an 
AARP survey found that 87 percent of the State's long-term care funds 
for aging and physical disability services is spent on care at 
facilities, compared to the national rate of 66 percent. When the 
developmental disabilities population is included, Delaware does fair 
better in meeting the national average, but this was a result of 
litigation action by The Arc against the State in 2002. The 2002 
litigation did indeed impact the delivery of services to those with 
developmental disabilities and enhanced community supports, but did not 
promote systemic reform across government. Since 2009, under the 
Markell administration, we have focused on shifting our resources and 
our delivery strategy to a community first focus. Individuals with 
disabilities should not have to prove that they are worthy of 
community. We ask that of no other population cohort and community 
should be the norm not the exception. The level of reform Delaware is 
addressing for individuals with serious persistent mental illness is 
seen, by us, as the proto-type for all with disabilities and the aging 
population in need of supports. It begins with a simple, but powerful 
expectation:

          Individuals with disabilities can live in their own home, 
        have meaningful employment and be ordinary Delawareans. They 
        may require some level of support, but those supports need to 
        be provided that effectively foster independence and fully 
        engage participation in society. This is the norm for 
        individuals without disabilities.

    A pivotal benchmark for Delaware to excel in our commitment to 
meaningful reform is the July 6, 2011 settlement agreement between the 
State and the U.S. Department of Justice which resolved a 3-year 
investigation of the Delaware Psychiatric Center.
    More importantly, the agreement became the blueprint for how 
Delaware would provide mental health services to individuals with 
severe and persistent mental illness, and creates the prototype for 
systemic reform across the government, in support of all individuals 
with disabilities.
         ii. creating systems that will make olmstead a reality
    In order to comply with the agreement, the State must prevent 
unnecessary institutionalization by offering agreed upon community-
based services to the target population. The target population is a 
subset of individuals with SPMI (serious, persistent mental illness) 
who are at the highest risk of unnecessary institutionalization. The 
agreed upon plan requires Delaware to move individuals from Delaware 
Psychiatric Center (DPC) into the community and for upgraded community 
supports and services. Our discussions with the USDOJ impressed upon 
them that we share their vision for improved mental health services in 
this State. The USDOJ findings made clear what we already knew, what we 
knew we needed to do and where we were already headed, which was to 
stop the historical over reliance on institutionalization and moving to 
more community-integrated and compassionate care. I believe this is an 
agreement that reflects where we want to take this State. We want to 
make this State a leader in mental health services, and the USDOJ 
shares that vision.
    The agreement is a multi-year commitment to provide improved mental 
health services in Delaware. To the USDOJ, it may be about ensuring 
we're complying with the Americans with Disabilities Act. But to us, it 
is about providing services to our neighbors, our family members, and 
our friends who have persistent mental health issues but who can, with 
the right support, be full participating, thriving members of our 
communities. More importantly, this agreement is the blueprint for how 
we are going to provide mental health services to persons with severe 
and persistent mental illness in this State. It will also set the 
direction for how we re-tool our system for all with disabilities. It 
is an approach based on providing services to people in the community, 
so that we can achieve better outcomes for persons with mental illness, 
and we can do so in a manner that protects their independence and sense 
of community.
        iii. how the state is advancing the reform on the ground
    I now wish to focus on how the State is innovating practices to 
accelerate building a recovery-based, community-robust system of care. 
DHSS created a new Request for Proposal (RFP) directed toward 
facilitating the discharge of individuals who have been 
institutionalized at DPC, most from 6 to more than 15 years. The RFP 
developed a ``case rate'' for each individual at DPC and these will be 
bundled into a total amount that will represent that provider's budget 
for this work. The provider will be expected to provide every service 
and support required for each of these individuals with the exception 
of significant physical health care emergencies. This rate is now a 
comprehensive rate that allows for all inclusive care and will 
incentivize the provider to support the individual within the least 
restrictive environment and will provide the funds to enhance the 
community level of support. The focus of our 5 year plan is:

     Establishment of community-based programs and use of DPC 
as an acute mental health hospital for stabilization as a hospital 
would be for individuals with a physical health crisis.
      Establishment of Individualized Recovery Plans, inclusive 
of the individual's dreams.
      Expansion of the crisis hotline to 24-7.
      Expansion of Mobile crisis teams that can respond across 
the State within an hour's timeframe.
      Development of a new crisis walk-in center in our rural 
county and crisis stabilization beds throughout the State in typical 
apartment settings.
      Expanded consumer run drop-in centers.
      Peer-to-peer counseling. The successful implementation of 
a Peer Support Specialist program at DPC to work with the DPC Recovery 
Teams and the Community providers to model individualized treatment and 
recovery planning strategies.
      Effective July 1, Medicaid will reimburse for 
telemedicine services--this is extremely important in our rural 
locations, inclusive of:

           Consultations, office or outpatient visits,
           Psychotherapy,
           Medication management,
           Psychiatric interview or examination, and
           State Rental Assistance Program (SRAP).--Bridge 
        financing via vouchers and connections with typical landlords. 
        Delaware developed the State Rental Assistance Program (SRAP) 
        to serve low-income Delawareans who require affordable housing 
        and supportive services to live safely and independently in the 
        community. At DHSS, we are referring individuals from DPC and 
        from other State-run nursing facilities to the Delaware State 
        Housing Authority for rental housing vouchers. One of the most 
        difficult things for individuals who have been in an 
        institution for a long period is affording a place to live. 
        SRAP provides that necessary foundation in making that 
        transition. DHSS has created a Housing Team made up of 
        individuals from within our disability divisions that are 
        dedicated to becoming housing support experts to continue to 
        assist in supporting individuals locate the housing of their 
        choice as well as working with our State Housing Authority and 
        municipalities to expand the integrated housing for individuals 
        with disabilities.

    Given the fiscal challenges, the need for smarter budgeting, 
smarter spending, and smarter management must take center stage if we 
are to achieve meaningful integration. We need to embrace the 
philosophy of community-based living but without the re-balancing and 
flexibility of the funding system, the system will remain vulnerable to 
stagnation and erosion. Most States have funding aligned with 
infrastructure, in personnel, buildings that are growing older and in 
repair, rather than funding the individual based on their 
individualized plan and integrating with the natural environment. 
Inclusion allows for leveraging of resources both paid and natural. So 
we can leverage our existing resources both fiscal and human with a 
focus on community. We are shifting resources out of the facilities and 
promoting a community-based system of support. DHSS is focused on the 
development of a quality assurance program that incentivizes based on 
outcomes as they relate to the promises of Olmstead/ADA and not funds 
for volume. If we evaluate based on the ADA and individuals 
achievements, we are placing a monetary value on the ADA principle. 
Some refer to this as re-balancing or re-tooling, regardless of the 
term, it is an effort to resource the community and leverage both 
funding and resources throughout and across the government.
    In addition to the operational implementation of Olmstead and ADA, 
the Department is engaging in a State public policy review. We have a 
rather antiquated law relative to detainment and commitment which has 
led to over 3,000 yearly involuntary commitments. That amounts to 
approximately eight involuntary commitments per day. The State has in 
the past funded the involuntary commitments but did not fund voluntary 
commitments. We are working toward revamping the detainment law and 
will require a new credentialed mental health screener, who will be an 
expert in community-based options and work closely with the emergency 
doctors, psychiatrists, and others to divert individuals to the most 
appropriate care level. DHSS is advocating changing how emergency 
evaluations are conducted, preventing unnecessary encounters with law 
enforcement and avoiding needless trips to emergency rooms and 
psychiatric hospitals. Individuals will be encouraged to voluntarily 
commit, if indeed this is seen as the most appropriate level of care 
and the State will fund both voluntary and involuntary commitments. A 
past State practice was to fund only involuntary commitments and many 
individuals were not even provided an opportunity to voluntary commit 
to treatment, which is a huge infraction on their rights and presents a 
barrier to empowerment. The effort to re-vamp this law has not come 
without objections from the trial lawyers and a protection and advocacy 
attorney, since, as a compromise, an immunity clause is in the draft 
legislation for emergency doctors, psychiatrists and credentialed 
mental health screeners. It is hard to predict if this policy change 
will be successful, since it has strong lobbyists on both sides of the 
argument. However, Bryce Hewlett, executive director of the Delaware 
Consumers in Recovery Coalition has stated, ``any loss of civil rights 
for any amount of time is unacceptable, but we've decided to support 
this bill because it takes so many steps in the right direction.''
    Meaningful reform must evaluate both operational and policy 
practices must be encompassing across the system, inclusive of the 
entities that support the typical population and develop procedures 
that encompass reasonable accommodations beyond structural, tangible 
accommodations. We need to evaluate accommodations for the class as 
well as for each individual, to assure equality of opportunity, full 
participation, independent living and economic self-sufficiency.
                    iv. a model for statewide reform
    As a State, we are committed to making the mandate of ADA and 
Olmstead a reality. As a State, we are not only focused on supporting 
individuals moving out of DPC and into the community, but are actively 
accessing all within our State facilities and asking if they want to 
return to their community and are assisting them to do so. DHSS is 
working with an independent agency to perform this assessment and 
providing education to the residents on ADA and Olmstead. We also 
continue to assist individuals in their desire to move from 
institutional settings to the community under the Medicaid Money 
Follows the Person program and our Journeys program. In addition we are 
working with hospitals and have created a diversion team that provides 
support to any entity that is evaluating a long-term care need. Our 
goal is a community first approach to care and returning individuals to 
their home environments or providing supports within the least 
restrictive environment. This recently developed service is the Care 
Transitions Program, and falls under the umbrella of the Delaware Aging 
and Disability Resource Center (ADRC). The program extends community 
living for individuals who are in the community or in the hospital and 
are seeking admission to one of the State long-term care facilities.
    The goal of the Care Transitions Program is to: (1) extend 
community living for individuals who are at high risk for nursing home 
placement by mitigating immediate risks and stressors that are 
prompting a move to a nursing home; (2) create a flexible spending pool 
to facilitate access to services and products. We initiated the 
diversion teams in February 2011 and since that time, 86 percent of 
those referred to facility-based care have been diverted back into the 
community with appropriate supports. It is anticipated that this 
percentage will increase as we evaluate those situations that were not 
able to be diverted and initiate a community-based structure to address 
these issues, especially if we find they are common across the 
population requiring facility-based care.
    The Money Follows the Person Demonstration (MFP) ``Finding A Way 
Home'' Program, is a special project funded by the Federal Government 
and the Delaware Department of Health and Social Services (DHSS) 
Division of Medicaid and Medical Assistance (DMMA). The MFP Program is 
available to assist eligible individuals that choose to participate in 
moving from an eligible Long Term Care (LTC) facility, (nursing home, 
Intermediate Care Facility for Developmental Disabilities ICF/DD) to an 
eligible residence in the community with available community services 
and supports.
    The Nursing Home Transition Program is State-funded and the overall 
goal of the program is to identify, inform and assist nursing home 
residents, who are not Medicaid-eligible, who want to move to a 
community-based setting. The program offers individualized case 
management to accomplish this goal. To date, both of these programs 
have supported 177 individuals in facility-based care back into their 
community. Currently, there are 58 individuals awaiting transition from 
facility care within the Money Follows the Person program. Currently 
MFP does not pay for home modifications until a participant is 
discharged home. This leaves people in a potentially unsafe situation 
if they cannot get in and out of the home without a ramp or other 
modifications. This also socially isolates people as they cannot leave 
their home for church, shopping, employment or other community outings.
    In our Medicaid program, we are changing the manner in which we 
deliver services to our long-term care population and those eligible 
for both Medicaid. Individuals in need of long-term care services 
require the greatest level of care and, therefore, are the most costly 
to serve. On April 1, 2011, we began utilizing an integrated long-term 
care approach that enhances and builds community supports and options, 
fully develops a continuum of available services, and so better 
contains cost while providing the market with what they desire. More 
importantly, it will more effectively support participants' desire to 
remain in the community. As the leader in the department, I have a 
standing monthly meeting with our Managed Care Providers and the 
Medicaid leadership to ensure that the purpose of the program is to 
develop enhanced community options and not merely for cost containment. 
I continue to outreach to the advocacy and consumer organizations to 
ensure that the program is indeed creating a community-based system of 
support and wish to ensure this is successful for those who access the 
system.
    In the area of substance abuse, mental health, disability and 
aging, we know that the market is in need of service and support 
enhancements that promote community-based care. We are also working on 
measures that would divert individuals from prematurely entering 
facility-based care through a more comprehensive universal effort in 
effective discharge planning, practice and the creation of State 
diversion teams that work with hospitals, Adult Protective Services and 
others who have a need for support but may not require a 24-hour 
residential setting. These situations typically led to an automatic 
referral to a facility without evaluating community-based support 
planning and engaging the State at time of an admission.
    In addition, we are working with St. Francis Healthcare, which will 
open Delaware's first PACE site in fall 2012. This Program for All-
Inclusive Care for the Elderly provides site-based comprehensive, 
coordinated long-term services and supports to Medicaid and Medicare 
participants who are 55 and older, require a nursing home level of care 
and are able to live safely in the community. This model of care can be 
replicated for individuals with disabilities.
    The State and the USDOJ also know that for individuals with 
serious, persistent mental illness, many have found themselves 
interacting with the criminal justice system. The State has created an 
across-the-cabinet approach to support those exiting the criminal 
justice system and providing the support network 6 months prior to any 
release. Known as the I-Adapt (Individual Assessment and Discharge 
Planning Team) Coalition consists of the Departments of Correction, 
Health and Social Services, Labor, Education and the State Housing 
Authority. The purpose of the I-ADAPT teams is to coordinate local 
efforts to support individuals exiting the Delaware Correction system 
and to develop relationships between service providers and government 
and build sustainable community supports and buy in for the State's 
reentry efforts.
                   v. fiscal security and empowerment
    Up until now, the focus of ADA/Olmstead has primarily been on 
expanding housing options (home, apartments, and independent living 
options with necessary supports). However, underlying support for full 
community participation must be a focus on financial capability and 
advancing ``economic self-sufficiency.'' Without attacking the 
underlying issue of poverty, quality of life choices are diminished. We 
know poverty impacts adversely mental and physical health, limits 
community participation, and affects adversely self-concept and others' 
perception of one's status and value. The next generation of innovation 
has begun in Delaware and also is being initiated in cities such as San 
Francisco and New York City. It is the design and implementation of 
financial empowerment strategies embedded in social and human service 
delivery.
    The Olmstead Community Integration Mandate compels us to attack 
poverty and financial instability through financial coaching as part of 
an individual's Medicaid support plan. Providing financial education 
and counseling that explores new options for employment (income 
production), savings (income preservation), and safeguarding and 
building assets can give our most vulnerable citizens with disabilities 
hope and goals that will enhance ``fuller community participation.''
    There is no roadmap out of poverty. However, State Medicaid re-
balancing of resources to meet Olmstead requirements can use a new lens 
to design individualized supports for working age adults with 
significant disabilities. CMS recognizes that community participation 
must include pathways to advance economic self-sufficiency. Financial 
coaching and financial empowerment can stabilize individuals and 
families and raise expectations and results about quality of life 
experience.
    In Delaware, we will use our government infrastructure (Medicaid, 
Vocational Rehabilitation, Education, Social Services, and Labor) to 
reset the focus to change thinking and behavior about financial 
capability through an integrated system of supports that enhance 
financial empowerment skills and outcomes. We are calling this the 
$tand By Me initiative: a partnership between DHSS and the United Way 
of Delaware. The National Disability Institute is working on site in 
Delaware to integrate financial empowerment as part of our collective 
service delivery system.
    What separates people with disabilities from the rest of the 
population is financial security. The majority of individuals with 
disabilities are of extremely low income which further disenfranchises 
and disempowers the population.
    Traditionally, State programs have provided support for basic needs 
and emergency services for low-income residents. In recent years, a 
shift in national perspective has moved leadership in major American 
cities and the Federal Government to pursue strategies which promote 
self-sufficiency. By providing low-income Delawareans with the tools 
and support they need to take charge of their financial lives, the 
cyclical dependence on benefits will be reduced, which will reduce 
investments for benefit programs for the State and the negative sense 
of self created by dependence for the clients.
             vi. need for an ada/olmstead outreach campaign
    I believe we need ADA/Olmstead Ambassadors throughout the States to 
promote the premise behind the civil rights movement and institute a 
broad education campaign. States must incorporate this awareness 
throughout the delivery system and in all areas of the Cabinet to fully 
support the civil rights of individuals with disabilities as a core 
value.
    Delaware's Court Monitor, Dr. Robert Bernstein noted the following 
in his first 6 month report to the Court:

          ``The Federal laws that are its basis have been around for 
        far longer than the settlement agreement; the ADA was enacted 
        over 20 years ago, and the Olmstead decision was rendered over 
        a dozen years ago. Despite the fact that these Federal laws 
        have enormous implications for people with SPMI and for how 
        public mental healthcare is delivered, and notwithstanding 
        numerous trainings by the State over the years, the Monitor 
        found a widespread lack of knowledge about the principles of 
        the ADA, their crucial implications for people with SPMI, and 
        how they relate to public services. Senior staff members have 
        an understanding of the settlement agreement and underlying 
        civil rights laws. However, just a step or two below leadership 
        positions, it is apparent that there is often only a passing 
        familiarity with the ADA, the settlement agreement, and their 
        requirements. This is particularly significant because it is in 
        these settings, rather than in the offices of management, that 
        decisions about services and interventions for specific 
        individuals are made. Perhaps most poignant is that 
        interactions the Monitor has had with consumers suggest that 
        they are unaware of their own civil rights under the ADA, let 
        alone the fact that the State has effected an agreement with 
        DOJ.''
          ``It is obvious that individuals who are charged with 
        implementing the settlement agreement and those who are 
        intended beneficiaries should be well-versed in its 
        requirements. It is also important that for the settlement 
        agreement to represent something beyond a laundry list of 
        prescribed actions, stakeholders need an appreciation of the 
        underlying values. It is the Monitor's impression that a lack 
        of basic knowledge about the ADA and Olmstead has sustained 
        providers, courts and others in unquestioningly making 
        decisions that perpetuate segregation, undermine self-
        sufficiency, and even result in coercive practices.''

    In closing, permit me to share with you my early lesson on 
inclusion:

          My path here today began when I was 12 years old, when a 
        young neighbor, Mike, who had an intellectual disability, 
        ventured out into our community to befriend us. What Mike 
        wanted was to be included with his peers and be a part of our 
        group. What he encountered was ridicule at his expense. The 
        memory still weighs heavy on my mind and heart. I didn't tease 
        Mike, but I did nothing to stop the others. That haunting look 
        on Mike's face changed my life forever, and I committed myself 
        to working toward a system that educates and promotes diversity 
        and inclusion. Mike on the red bike taught me my first lesson 
        on the value of inclusion. I saw Mike a few years back and he 
        told me that he now drives a car, works at a farmers market and 
        is married. He is an ordinary Delawarean, a full participating 
        community member and was smiling broadly. I told him that he 
        was also a great teacher.

    Thank you for this opportunity to testify and I look forward to 
your questions.

    The Chairman. Thank you very much, Secretary Landgraf.
    Commissioner Baugh.

 STATEMENT OF ZELIA BAUGH, COMMISSIONER, ALABAMA DEPARTMENT OF 
                 MENTAL HEALTH, MONTGOMERY, AL

    Ms. Baugh. Thank you. It is an honor to be here today. I 
really appreciate it, and so does the State of Alabama.
    In 1970, there was a landmark case that began in Alabama. 
It was called the ``Wyatt v. Stickney'' case. That case set the 
stage for individuals with mental health problems to have 
access and right to humane treatment. And in the settlement 
phase, which started in 1999 in Alabama and continued until 
approximately 2003, certain conditions were set forth in the 
settlement. As a result of that settlement, the State of 
Alabama has been committed to community integration of people 
with all disabilities.
    We have systematically downsized our State institutions in 
the State of Alabama starting in, actually, 2003 with the 
closure of several developmental disability hospitals, as well 
as a few State psychiatric hospitals. Last March, Governor 
Robert Bentley from Alabama and myself made the decision to 
close the Partlow Developmental Center, which was our last 
institution for persons with developmental disabilities. We had 
approximately 151 consumers living in that State institution 
that the Governor believed wholeheartedly could live in 
community integrated settings. That was the right thing to do 
for the patient and the right thing to do for an Alabamian. As 
a result of that, we closed the Partlow Developmental Center by 
December 28, 2011.
    Since that time, the individuals that we have moved from 
those facilities have enjoyed integrating into community-based 
settings. We believe that virtually all people with 
disabilities, even severe disabilities, can live in their own 
apartment or home, have a job with employment supports if 
needed, and be engaged with family, friends, and their 
community.
    We have had success in Alabama. Thousands of people have 
moved from State institutions to community settings, and people 
who would otherwise have been served in State facilities are 
now being served in community settings.
    Alabama has made progress in good budget times and in bad 
budget times. Currently, our State budget is challenged at this 
moment with the recession that we are in. As a result of that, 
we have had significant financial cuts made to the Department 
of Mental Health, as well as other State agencies. And we have 
deliberately and thoughtfully reallocated funds from 
institutions to the community as a way to deal with the budget 
cuts, and also as a way to move people out of an institutional 
setting into a community-based setting.
    I believe that States can make significant progress in 
complying with Olmstead without huge, new sums of money. In 
Alabama, we have been able to prove that thus far.
    I work for a Republican Governor in a Republican State, and 
this is a bipartisan effort. Our Governor is very supportive 
because it is the right thing to do for Alabamians that are 
living in large institutional settings, and it is also a cost-
effective measure for us as well.
    It currently costs the State of Alabama $150,000 per year 
to keep one patient in a State psychiatric hospital. That is 
100 percent State dollars. If we move that individual into a 
community-based setting, we can keep that individual in a 
community-based setting for $60,000 or less per year, and be 
able to drawdown Federal dollars on top of that. So as you can 
see, it is not only a good decision clinically for individuals, 
but it is also a sound business decision in these times of dire 
fiscal constraints.
    For years, the Wyatt case set the agenda in Alabama. Our 
current efforts have grown out of Alabama's own commitment to 
community integration. To make Olmstead a reality, we have to 
change the expectations and use funding differently. Alabama 
uses an individualized service planning process, but our focus 
is on identifying the services and individual needs to be 
successful in the community. Funding has to be flexible enough 
to allow providers to meet identified needs.
    Change can be hard when it requires State employees and 
private providers to behave in new ways. We try to carefully 
explain our priorities and the reasons for them, and engage 
stakeholders in planning and give them a stake in our success. 
We try to build a consensus and move forward.
    When we announced our decision to close the Partlow 
Developmental Center last March, we met a lot of resistance 
from local legislators, probate judges, as well as the sheriff 
and police departments. And, in particular, a lot of pushback 
from family members and loved ones of individuals who were in 
Partlow because they were concerned about how their loved one 
would be treated, and the quality of care that is being 
delivered to those individuals.
    We have partnered with the Alabama Disabilities Advocacy 
Program and we have a very strong partnership with them, and 
they actually are part of our quality continuum of care as an 
outside agency making sure that the quality of services 
delivered to those individuals are of the highest that they can 
be. So some of our challenges have been stakeholder buy-in from 
families, communities, legislators, and law enforcement 
officials.
    Appropriate housing and providing networks, especially in 
cases of behavioral and medical needs, have also been a 
challenge to make sure that we have the appropriate community-
based resources available for an individual to live fully in 
the community.
    Some of the other challenges that we have experienced as 
part of our downsizing have been the stigmas related to 
individuals with mental health problems, as well as 
intellectual disabilities and other developmental disabilities, 
as well as physical.
    We have received a lot of NIMBY behavior from communities 
when we made the decision to close our Partlow Developmental 
Center because they did not want individuals in their backyard 
thinking it would decrease their property values and increase 
the crime rate, which that can be further from reality for the 
people that we serve.
    Funding has been a challenge as well because when we are 
thinking creatively and out of the box and, ``How can we do 
this with less?'' Or, ``How can we maximize other areas of 
funding?'' One of the key opportunities, we believe, to assist 
us and other States is flexibility in funding, and be able to 
have those challenges and opportunities with not having to be 
as tied to one certain location or one certain provider with 
regards to Federal and/or other State funding, and allow the 
flexibility.
    Our Federal policy level, we are continuing to support and 
encourage Olmstead implementation. Some of the challenges or 
opportunities that we see is creating incentives, especially 
through the Medicaid program such as the 1915(i) State plan. We 
believe that that is giving the State of Alabama an opportunity 
to be more creative and seek out more Federal dollars, and 
maximize those dollars to create community settings, expanding 
technical assistance offered to States.
    Again, I want to applaud Mr. Claypool and the other Federal 
agencies for their cooperation at the Federal level because it 
does play over into the States and our ability to access 
resources or best practices from the Federal level.
    In closing, I would like to say that this has been an 
interesting experience, thus far. I was appointed January 2011 
when Governor Bentley was sworn into office, and it has been an 
honor and a privilege to serve with Governor Bentley because he 
is extremely supportive of inclusion, and giving opportunities 
for every individual.
    I want to leave you with a story of when we closed our 
Partlow Developmental Center, which we are the first State in 
the South to close all of our developmental centers.
    We moved a gentleman into a two-person home, and he went to 
church with his caretaker, and he started crying in church. And 
the caretaker and other church members were concerned about 
this gentleman, asked him what was wrong, and he said that he 
was crying because he was happy, because he never thought he 
would be able to go to church again.
    It is the simple things that many of us take for granted 
that people with disabilities have to struggle to get and to 
me, that is where the change happens.
    Thank you very much.
    [The prepared statement of Ms. Baugh follows:]
                   Prepared Statement of Zelia Baugh
                           executive summary
    In 1999, the Alabama Department of Mental Health (ADMH) created a 
strategic plan that resulted in the settlement of the 30-year-old Wyatt 
v. Stickney lawsuit. That plan became ADMH's designated Olmstead plan. 
Since the implementation of the Wyatt settlement agreement, ADMH has 
further planned and executed numerous major initiatives that effectuate 
the letter and spirit of Olmstead.
    Regarding services for people with intellectual disabilities, ADMH 
settled a waiting list lawsuit by developing more well-defined and 
noticed due process procedures relating to denials and/or delays in 
granting eligibility and/or services to people with ID. The settlement 
supports the proposition that Alabama may cap its home and community-
based services waiver programs and operate a waiting list serving 
applicants by priority based upon their levels of severity and emergent 
needs. In addition, with the closure of the W.D. Partlow Developmental 
Center in December 2011, Alabama became the first State in the South to 
achieve the milestone of closing all public institutions for people 
with intellectual disabilities and instead serving all eligible 
individuals in home and community-based waiver services.
    ADMH has also enacted a systematic and inclusionary plan to reduce 
levels of institutional care and expand access to community-based 
services for individuals with mental illnesses. Through extended-care 
transitions, acute-care transitions and facility closures, ADMH has 
demonstrated less reliance upon State psychiatric inpatient services by 
shifting funding and focus to less costly, but more effective community 
services and supports. Likewise, funding continues to be dedicated for 
community integration and service expansion efforts, and the department 
has worked with other State agencies to expand services. Further 
efforts to provide a better quality of life in the community for both 
individuals with mental illnesses and intellectual disabilities include 
collaborations on several housing and employment initiatives.
    ADMH has experienced three main challenges in its efforts to shift 
services to community settings: securing stakeholder buy-in, 
identifying and developing resources within provider organizations to 
serve persons with significant behavioral challenges or multiple 
medical needs, and negative stigma. While ADMH has developed strategies 
to overcome these challenges, long-term efforts will be needed to 
ensure continued success. Additionally, decreased funding to Medicaid, 
proposed cuts to medication coverage and optional health care services, 
and more collaboration between Federal and State levels in meeting 
Olmstead goals are areas of great concern and need. Ultimately, ADMH is 
proud of its large-scale initiative to provide community-based care for 
Alabamians and ushering in a new era of individuals enjoying inclusive 
lives in their communities.
                                 ______
                                 
                              introduction
    In 1999, the Alabama Department of Mental Health (ADMH) created a 
strategic plan that resulted in the settlement of the (at the time) 30-
year-old Wyatt lawsuit. That agreement became ADMH's designated 
Olmstead plan. ADMH substantially complied with the provisions of the 
settlement over a 3-year period, resulting in the end of this landmark 
lawsuit that, among other things, was a precursor to the Americans with 
Disabilities Act that was later construed in the Olmstead case. Since 
the implementation of the Wyatt settlement agreement, ADMH has further 
planned and executed numerous major initiatives that effectuate the 
letter and spirit of Olmstead.
    For example, among other things, the Wyatt settlement required a 
minimum of 300 beds in extended-care psychiatric hospitals and 300 
people residing in developmental centers (intermediate care facilities 
for people with intellectual disabilities, i.e., ICF/ID) be closed and 
the individuals placed in community-based settings, respectively. ADMH 
deliberately did not agree to close any specific facility that it 
operated. However, as it moved individuals to community-based settings, 
the department decided on a comprehensive consolidation plan to close 
three developmental centers, all three nursing homes, co-locate one 
psychiatric hospital with another, eventually close the relocated 
hospital and establish community services support teams for ID 
residents.
     plans and initiatives: division of developmental disabilities
    Before the Wyatt settlement agreement could be implemented, another 
lawsuit was filed on behalf of individuals with intellectual 
disabilities who were already living in community-based settings, but 
who sought Medicaid home and community-based services waivers. Once 
Wyatt was settled, and after some limited litigation, the department 
settled this ``ID waiting list case'' by incorporating more well-
defined and noticed due process procedures relating to denials and/or 
delays in granting eligibility and/or services to people with ID. The 
settlement supports the proposition that Alabama may cap its home and 
community-based services waiver programs and operate a waiting list 
serving applicants by priority based upon their levels of severity and 
emergent needs, as it has designed.
    Recently ADMH assessed the remaining individuals being served at 
its last intermediate care facility for people with intellectual 
disabilities (ICF/ID), the W.D. Partlow Developmental Center, and 
determined that all of its residents would be better served in more 
community-integrated environments. Therefore, in March 2011 the current 
ADMH commissioner, Zelia Baugh, and Governor Robert Bentley decided to 
close Partlow and instead serve all eligible individuals in home and 
community-based waiver services throughout Alabama. At the time of the 
closure announcement, 11 other States had closed all their public 
institutions for persons with intellectual disabilities, and Alabama 
became the first State in the South to achieve this milestone when the 
center officially closed on December 28, 2011.
  plans and initiatives: division of mental health & substance abuse 
                                services
    As a result of the Wyatt ``right to treatment'' litigation and in 
response to the Olmstead ``integration mandate,'' ADMH's Division of 
Mental Health & Substance Abuse Services has been an active participant 
in Alabama's systematic and inclusionary plan to reduce levels of 
institutional care and expand access to community-based services.
    Upon the inception of the Home and Community Based Services 
Expansion Project, ADMH was a member of the Olmstead Planning Core 
Workgroup established by the lead agency, the Alabama Medicaid Agency. 
The workgroup comprised of State agencies, consumer and advocacy 
groups, and other stakeholder representatives was charged with 
designing a 3-year strategic plan for expanding home and community-
based services. Through the Wyatt settlement agreement, ADMH was 
required to implement a statewide community education plan, reduce 
institutional levels and develop more community options. Several 
workgroups comprised of ADMH administrators and hospital staff, 
consumer and family members, public and private mental health 
providers, and advocacy groups were established to form the Wyatt 
Implementation Plan. This Wyatt plan and the 3-year Olmstead plan 
converged to create the roadmap to drive a reduction in the use of 
State psychiatric institutions and expand community service options.
    The converged plan supported the implementation of a census 
reduction model in which the care of individuals housed within the 
State's extended-care wards would be transferred to the community 
provider network. This resulted in a significant expansion of 
residential services, many of which reflected the development of new 
``specialty,'' and small capacity (three bed) residential models to 
address the unique needs of extended-care residents, such as medical 
and forensic needs. Expert training and consultation was also provided 
through Olmstead funds and other funding sources to include deaf 
interpreter training, person-centered discharge planning and dual 
diagnosis services.
    ADMH has demonstrated less reliance upon State psychiatric 
inpatient services by shifting funding and focus to less costly, but 
more effective community services and supports. Strides to better serve 
consumers outside of inpatient settings have continued beyond those 
prompted by the Wyatt settlement, leading to a statewide reduction in 
hospital census as well as closures of State psychiatric facilities. As 
an example, since 1971 the census at Bryce Hospital, Alabama's oldest 
psychiatric hospital, has dropped from more than 5,000 patients to less 
than 240 in 2012. Other activities that have followed Wyatt initiatives 
include:

    In 2007 regional planning groups made up of consumers, family 
members, mental health providers, and other stakeholders developed 
plans for new services and protocols designed to transfer the acute-
care function from State hospital admission units to local community 
settings. These efforts resulted in a number of residential programs 
obtaining ``designated mental health facility'' status (community-based 
psychiatric units or hospitals that may serve committed patients 
outside of a State-run institution), the purchase of local inpatient 
care, increased psychiatric time, development of a Psychiatric 
Assessment Center in an area of high State hospital admissions and the 
establishment of mental health service teams consistent with ``best 
practices,'' such as Assertive Community Treatment teams, Adult In-Home 
Intervention teams and Bridge teams.
    In fiscal year 2009 extended-care residents at Bryce and Searcy 
were evaluated to identify needed community services to permit 
discharge from those hospitals. In addition, residents living in 
community residential programs for over a year were evaluated to 
determine services needed to promote independent living in community. 
The planning process continued into fiscal year 2010 and was 
incorporated into planning for the sale of Bryce Hospital to the 
University of Alabama and the subsequent construction of a smaller, 
state-of-the-art hospital. Final plans were developed and approved by 
the Bryce Consumer Transitioning Work Group, the Mental Illness 
Coordinating Subcommittee (both incorporating a wide range of 
stakeholder representation) and the commissioner.
    The community provider network in Alabama's MI Regions 2 and 4 
established boards for the purposes of promoting service coordination 
and monitoring of project goals at a regional level. New services began 
in June 2010 in Region 2 (north central Alabama in the Bryce Hospital-
served area) and in August 2010 in Region 4 (south Alabama in the 
Searcy Hospital-served area). The plans included the development of a 
variety of community services such as an increase in permanent 
supportive housing units; augmenting current residential homes; 
establishing a Medication, Observation, and Meals (MOM) apartment 
model; an increase in small capacity (three bed) homes; the utilization 
of Peer Bridger Teams; an increase in Peer Support Services and the use 
of flex funds.
    Another part of ADMH's plan for consumer independence and inclusion 
is the closing of two psychiatric hospitals by the end of this calendar 
year. To prepare for closure at Greil and Searcy Hospitals, a census 
downsizing has been underway for the past year. While downsizing is a 
working goal for ADMH, the feat would not be attainable without 
partnerships the department has made with community-care providers and 
private healthcare facilities. By closing these hospitals and 
successfully overseeing all transfers of consumers, ADMH will provide 
the best health care available and do it in a way that is financially 
responsible.
    Funds continue to be dedicated for community integration and 
service expansion efforts though block grant dollars, general State 
funds and other grant resources. Throughout the years, community 
integration and services expansion have been the focal point of the 
SAMHSA Block Grant goals and targets for mental health services. The MI 
Planning Council, which is mandated to approve the Mental Health Block 
Grant goals, has supported this process, and their guidance has steered 
enhancements to this process to expand into peer-directed care that is 
strength-based and person-centered. In fact, over a decade ago, ADMH 
partnered with the MI Planning Council to apply for the Olmstead 
stipend, which is provided to States on an annual basis. The MI 
Planning Council established guidelines for the submission and approval 
process for proposed uses of the stipend. Funding is dedicated to 
facilitate State's efforts to carry out the values expressed under the 
Olmstead decision of promoting community integration for adults with 
serious mental illnesses and/or co-occurring substance use disorders 
and children with serious emotional disturbances.
    Additionally, ADMH is currently working with the Alabama Medicaid 
Agency to expand services through increased rehab options, targeted 
case management and the 1915-i State plan amendment (SPA). The 1915-i 
SPA involves needs-based criteria that require an individual to have a 
variety of risk factors and a functional need for assistance with 
community living skills, which cannot be met by an outpatient clinical 
service.
                     employment & housing programs
    ADMH's Division of Developmental Disabilities is working with the 
Alabama Medicaid Agency to propose amendments to its existing HCBS 
waiver programs to de-emphasize day services and emphasize more 
supported and integrated work services. ADMH is hopeful that resolution 
to these amendments can be achieved by summer 2012. Additionally, the 
Division of Mental Health & Substance Abuse Services is also reviewing 
ways to shift from day programming to employment services assisting 
consumers in achieving maximum quality of life, independence and self-
worth.
    To foster more housing opportunities for people with serious mental 
illnesses or intellectual disabilities, ADMH embarked upon a 2-year 
partnership with the Alabama Housing Finance Authority to prioritize 
portions of housing developments financed through a combination of low-
income housing tax credits and the Home Investment Partnership Program. 
These plans were approved by HUD and netted up to 15 percent of housing 
units developed through funding from these two programs for the years 
2000 and 2001. Under this initiative, people with mental disabilities 
have a priority for occupancy up to the total of reserved units and 
when they vacate the premises, that priority remains. If after working 
with local mental health service providers and ADMH, housing managers 
cannot find a person with mental disabilities to occupy the premises, 
other tenants may occupy that small, integrated percentage of these 
units. ADMH also created a housing consultant/advocate position to 
assist individuals with issues that may arise with the managers of 
these units (and others) because of problems they may have with 
landlords related to their illness or condition. In addition, ADMH is 
currently working with HUD, AHFA and housing developers on pilot 
demonstrations to provide more housing options in integrated settings 
for individuals.
                               challenges
    ADMH has experienced three main challenges in its efforts to shift 
services to community settings. The first challenge was securing 
stakeholder buy-in. While most consumer and advocacy groups supported 
the idea, much resistance was met from legislators, probate judges and 
law enforcement. Likewise, some families expressed concern that their 
relatives could not live and work in the community and that somehow 
they would be sacrificing safety by not living in a congregate setting. 
ADMH held regional meetings with these stakeholders to educate them 
about the closure process and listen to their concerns, and even made 
changes to meet their needs. Additionally, much effort went into 
assuring families that their relatives' needs and safety could continue 
to be met at or above the level of institutional care.
    Also challenging was identifying and developing resources within 
provider organizations to serve persons with significant behavioral 
challenges or multiple medical needs. ADMH held specialized trainings 
with interested providers about enhancing their services in order to 
serve these individuals. However, as institutions have closed and 
budgets have shrunk, the ability of the State, with its limited 
resources, to provide ongoing training to provider organizations to 
assist them with professional growth has been difficult.
    A third challenge stems from the negative stigma sometimes directed 
toward people with mental illnesses and intellectual disabilities. 
NIMBY-based (``Not In My Backyard'') opposition across the State and 
country, stigmatic language and incorrect assumptions about violent 
tendencies are all examples of stigma. ADMH believes part of providing 
quality services to the people it serves includes public education and 
stigma reduction efforts, and the department regularly implements 
public education strategies. For individuals with intellectual 
disabilities, these efforts bring inclusion in the community closer to 
reality. For those with mental illnesses, giving the facts about these 
illnesses encourages people to get treatment or help others they know 
seek treatment. It also enhances long-term recovery, and increases 
understanding and acceptance from friends, family members, peers and 
society as a whole.
                                 needs
    There is a concern that with decreased funding to Medicaid, there 
will be a decline in the overall quality of health care available to 
persons currently served through the HCBS waivers. Individuals already 
have limited choices in healthcare providers who accept Medicaid. With 
proposed cuts to providers, their choices could become more limited. 
Also, with proposed cuts to medication coverage and optional health 
care services, people's quality of health, safety and well-being could 
be further complicated.
    Additionally, more collaboration between Federal agencies in 
consolidating and streamlining mandates and access to Federal programs 
that meet the initiatives of Olmstead efforts would be helpful. 
Currently States have to dedicate extensive resources to seek out 
Federal grants and programs that would help them meet their Olmstead 
goals. Improved communication between the Federal and State levels 
could help ensure States meet and exceed these goals.
                                 close
    The Alabama Department of Mental Health has launched a large-scale 
initiative in providing community-based care for Alabamians. Not only 
has the department enjoyed success, but more importantly, individuals 
who have transitioned to community-based care have reported being more 
satisfied with services and more connected with their friends and 
families. The era of institutionalization is over. Instead, a new era 
has begun with individuals enjoying inclusive lives in their 
communities.
                               Attachment
                  admh community integration timeline
December 2011--W.D. Partlow Developmental Center closed
July 2009--Alice Kidd Nursing Home closed
October 2004-- Thomasville Mental Health Rehabilitation Center merged 
with Searcy Hospital
April 2004--A.P. Brewer-Bayside Developmental Center closed
January 2004--J.S. Tarwater Developmental Center closed
December 2003--Wyatt Case closed
October 2003--Lurleen B. Wallace Developmental Center closed
September 2003-- Thomasville Mental Health Rehabilitation Center 
relocated as a separate entity on the Searcy Hospital campus; S.D. 
Allen Nursing Home closed
August 2003--Claudette Box Nursing Home closed
January 2000--Wyatt settlement agreement
June 1999--Olmstead decision
April 1996--Eufala Adolescent Center closed
November 1996--Glenn Ireland, II Developmental Center closed
October 1970--Wyatt case filed





    The Chairman. Well, thank you very much, Commissioner 
Baugh, for a very profound statement.
    And now we will turn to Ricardo Thornton. Mr. Thornton, 
welcome to the committee. Please proceed.

 STATEMENT OF RICARDO THORNTON, SR., FORMER RESIDENT OF FOREST 
                     HAVEN, WASHINGTON, DC

    Mr. Thornton. Thank you. First let me say, good morning, 
Senator Harkin. Good morning to you and to the Committee on 
Health, Education, Labor, and Pensions. I am very excited. I am 
honored to be here today.
    My name is Ricardo Thornton. I am here representing the 
92,000 people who are still living in institutions in large 
public and private facilities. For people with intellectual 
disabilities and for all of the people like me who used to live 
in institutions.
    With me today is my wife Donna. I lived in institutions all 
of my childhood. I was a resident of D.C. Village and then in 
1996, I went to Forest Haven, the DC institution for people 
with intellectual disabilities. My wife, my brother, and my 
sister also lived at Forest Haven.
    For many years, no one told me that I had a brother or a 
sister there. I did not get to think for myself. The staff 
thought for me. They made decisions for a long time and no one 
expected anything of me.
    At Forest Haven, where I used to go, and like I said, I 
lived there, went there. I was in a cottage. Each of the 
cottages had names. If you see the trees, like the oak tree, 
the maple tree, those types of names. I was at Oak Cottage. And 
there were lots of guys. I was learning basic skills there.
    I have seen lots of abuse. It was sad, but sometimes you 
have to walk away from it. You could not snitch on them because 
you would get in trouble, but it was sad to see and it hurts 
me. And then when I had a relationship with my sister, later on 
I did have family members who would come out to Forest Haven to 
visit us, and it was sad to me because they came out, and they 
would get on the ball field, and say, ``We have all this 
food.'' And they showed a lot of love, but I had no idea who 
they were and I considered them as strangers.
    Later on, I had developed a better relationship to know who 
my family was, that was how I got to know my sister Earline and 
we did a lot of fun stuff there. Unfortunately, she passed at 
the wrong time, and no one had an explanation on what really 
happened. She died in a cottage there. And everyone wanted to 
know what I was going to do next. And all I was told was, ``She 
had a heart attack. Let's leave it at that.'' Too many 
incidents like that happened and there are no defense with 
that.
    But the good thing was I promised her before she died that 
I would advocate, and I would go out and advocate for her and 
people who cannot advocate for themselves. I will continue to 
advocate. So I wanted to keep that promise. That is why I am 
here today at the Senate.
    I was very excited to see my wife Donna who also lived 
there. Donna had a favorite swing that she used when problems 
were so bad, she would go to her swing and swing. And sometimes 
she would get into trouble for doing it, and she tells a story 
about that, but I just thought it was fascinating to see that 
she had a dream. And her dream was she wanted to one day get 
out, get into the community, have a husband, have a beautiful 
family, and a wonderful life just like everyone else.
    We did get out. Forest Haven closed, and I am going to be 
very brief because of the time, Forest Haven closed and we got 
out. I moved into my first group home. I was excited. People 
that left Forest Haven, you know, when you get into the 
community, we are excited. We cannot wait to see what is next, 
but to find out that we are winding up in a group home that 
still has the same institution setting and people did not want 
us in the neighborhood. You know, they had a lot of resistance 
to us. So what I did was I went to a hearing.
    I remember providers coming together for this big hearing 
in DC to talk about what is the problem. Why is it that people 
do not want us in the neighborhood? What is the big problem? 
And I remember going there, and testifying, and I had invited 
the council,

          ``Since you had talked about people with disabilities 
        so bad, I want to invite all of you to come to my 
        wedding. We are going to have a handicapped wedding.''

    [Laughter.]
    We had a wedding and thanks to the staff at the community, 
they provided us, got us together with this big program. We had 
a beautiful wedding. We had the photographer to come out, and 
it was to show people what people with disabilities can do if 
you give us a chance to. We had a beautiful wedding.
    Later on down the road, we had someone from the 
``Washington Post'' who came out. Mike Wallace came out and did 
an interview, which was really unique. He took a look at the 
institution where we lived. We showed him some of the real bad 
things that were happening and we showed him some of the good 
things that were happening, and he was just so fascinated with 
that.
    I have to say that we are in the community. I work at the 
Martin Luther King Library downtown. I have been there 35 years 
now. My wife works at Walter Reed, and she is now working at 
the Army Medical Center, and she has been there 22 years. My 
brother now works at Catholic University, and I do not know how 
many years he has been there, but they are happy, and they are 
excited about being in the community and learning something new 
and different.
    Many of us, and many of the people that I advocate for, are 
really against going to workshops. They really want real jobs, 
real opportunity, to get a feel of something different not just 
going there doing skills, but they want to use their ability. 
So we got a chance to do that.
    The other thing we have in our community is we are very 
active in our church. We have a church where many come with 
disabilities. They play, they sing songs, and they do a lot of 
fun stuff. They are a part of the community, and I wish you 
could see the growth. It is there. It is really happening.
    And I just have to say, Senator, that disability is not a 
disability. One of the things I also did was I am very active 
in Special Olympics. Thanks to Mrs. Shriver, Ted who is no 
longer here, but those people who inspired us to have Special 
Olympic competition games. It was not so much about the 
competition and competing in the games. Yes, I loved the gold 
medals, I loved the silver medal, I loved the bronze medal, but 
the one thing I loved most was I did not have to worry about my 
label. My label. I was a person, not with a disability, but I 
was a person who had abilities, and that is what Mrs. Kennedy 
gave us to look at our abilities to achieve and to reach our 
goals. And so, I am really thankful for that.
    And in closing, it is just saying that I have seen so much 
growth within our community. I have seen it around the States. 
I see everybody trying to make changes and to turn things 
around, but the bottom line is 92,000 people who are still 
living in institutions. It is time to get them out of there and 
get into the community, so they can be a part of growth, just 
like me and my wife Donna.
    So Senator, again, I thank you for the opportunity to sit 
here and speak today. And again, for me, I have a lot of people 
who gave me support, and believed in me, and my community, for 
me to achieve the goals I have achieved.
    I can go on and on, but I just thank you, Mr. Chairman.
    [The prepared statement of Mr. Thornton follows:]
              Prepared Statement of Ricardo Thornton, Sr.
                                summary
    With me today is my wife Donna and my son Ricky.
    I lived in institutions all of my childhood. I was a resident of 
first DC Village and then in 1966 I went to Forest Haven, DC's 
institution for people with intellectual disabilities. My wife, 
brother, and sister also lived at Forest Haven. My sister died in 
Forest Haven and is buried there. I advocate on her behalf and on 
behalf of others who cannot speak for themselves.
    In the institution, I didn't get to think for myself. The staff 
thought for me and made all of my decisions. For a long time, no one 
expected anything of me. I got to know some good staff and some really 
bad staff. I witnessed abuse, especially of people with severe 
disabilities.
    I left Forest Haven in 1980. That was a great day! I was in the 
first group to go out.
    After I left Forest Haven, I lived in several group homes. I 
started to date Donna--and then she proposed to me. People didn't think 
we should get married but a few people encouraged and believed in us. 
So we got married, and later we had a beautiful baby boy, our son 
Ricky. We are very proud of Ricky. He graduated from high school, took 
a few college courses, is now working part-time, is married, and is the 
father of a beautiful baby girl.
    I have worked at the Martin Luther King Library in DC for 35 years. 
My wife Donna worked for over 30 years at Walter Reed Medical Center 
and now works at the Army Medical Center in Bethesda. My brother 
William works at Catholic University. All of us pay taxes and make a 
difference on our jobs and in our communities. Donna and I serve on 
many Boards and committees, and are very active in our church.
    When I lived in the institution, no one would have believed that I 
could have the life I have today. I couldn't always advocate and do 
what I can do now. I had people who believed in me and who supported 
me. Some of the best support Donna and I have received has been from 
friends. When you live in the community, you make friends and they 
support you. You don't have to depend on staff for all of your support, 
and you get to support others as well. You develop networks that you 
could never have in the institution. I've seen this happen for so many 
people, including people with severe disabilities.
    I've seen people with severe disabilities who have grown and 
accomplished great things given the right support. I hear people say 
that some people are too disabled to live in the community but I've 
seen people just like the people still in institutions who do so much 
better in the community--because no one expects you to do anything in 
the institution but survive. People need to have high expectations for 
people with disabilities because then they'll give them opportunities 
to learn and grow. People don't grow in institutions. There's no such 
thing as a good institution. Segregating people is always bad, people 
never grow in those places, and are safer and happier in the community.
    We can't go back. We can't go back to a time when people are moved 
against their will to places where they have no opportunities to learn, 
grow, and contribute. We need to keep moving forward. Thank you for the 
opportunity to testify today and for your continued support of people 
with disabilities.
                                 ______
                                 
    Good day, Senator Harkin and members of the Senate HELP Committee. 
My name is Ricardo Thornton. I am here representing the 92,000 people 
who are still living in institutions and large public and private 
facilities \1\ for people with intellectual disabilities--and for all 
of the people, like me, who used to live in an institution. With me 
today is my wife Donna and my son Ricky.
---------------------------------------------------------------------------
    \1\ Public and private residential settings for 16 or more people, 
including State-operated institutions, private intermediate care 
facilities, private facilities, and nursing facilities. From Table 5 in 
Braddock, D., et al. (2012). The State of the States in Developmental 
Disabilities 2011. Boulder, CO: University of Colorado.
---------------------------------------------------------------------------
    I lived in institutions all of my childhood. I was a resident of 
first DC Village and then in 1966 I went to Forest Haven, DC's 
institution for people with intellectual disabilities. My wife, brother 
and sister also lived at Forest Haven. For many years, no one told me 
that I had a brother and sister. We weren't told that we were related.
    In the institution, I didn't get to think for myself. The staff 
thought for me and made all of my decisions. For a long time, no one 
expected anything of me.
    I got to know some good staff and some really bad staff. I 
witnessed abuse, especially of people with severe disabilities.
    My sister died in Forest Haven. She is buried at Forest Haven, and 
I still go back to visit her grave. I promised to advocate on her 
behalf and on behalf of others who cannot speak for themselves.
    I left Forest Haven in 1980 when I was in my early twenties. That 
was a great day! I was in the first group to go out.
    I lived in a few different group homes. Living in the community was 
a big adjustment. Some people looked at us differently. The community 
didn't want us there. There was trash in the alley and the neighbors 
thought we put it there until they saw that we were there cleaning it 
up. At first, in the group homes, people treated us in some of the same 
ways as when we were in the institution. I wanted my own bank account 
but staff didn't want me to manage my own money, so I got in trouble.
    While I was living in a group home I started to date Donna--and 
then she proposed to me. People didn't think we should get married but 
a few people encouraged and believed in us. So we got married, and 
invited everyone we knew to the wedding. Later, we had a beautiful baby 
boy, our son Ricky, 2 lbs 11 oz. We are very proud of Ricky. He 
graduated from high school, took a few college courses, is now working 
part-time, is married and is the father of a beautiful baby girl. We 
were written up in the Washington Post and got to be on 60 Minutes.
    When I lived in the institution, no one would have believed that I 
could have the life I have today--married with a son and granddaughter, 
a good job for 35 years, a driver's license and car, and opportunities 
to speak on behalf of Special Olympics International, which has taken 
me to places like Johannesburg. It's important to have people believe 
in you and to expect that you're going to succeed. People need to have 
high expectations for people with disabilities because then they'll 
give them opportunities to learn and grow. People don't grow in places 
like Forest Haven and in other institutions.
    I have been working at the Martin Luther King Library for 35 years, 
as an employee of the DC government. I started as a volunteer, then as 
a part-time worker, and then full-time. My wife Donna worked for over 
21 years at Walter Reed Medical Center and is now at the Army Medical 
Center in Bethesda. My brother William works at Catholic University. 
All of us pay taxes and make a difference on our jobs and in our 
communities. Donna and I serve on many Boards and committees to make 
things better for people with disabilities, and we are very active in 
our church.
    I couldn't always advocate and do what I can do now. I had people 
who believed in me and who supported me--friends and providers. I've 
seen people with severe disabilities who have grown and accomplished 
great things given the right support. For many people, supports come 
through Medicaid which helps people live in the community and get 
services such as personal care, transportation, and help learning to do 
things like plan and manage their household. I hear people say that 
some people are too disabled to live in the community but I've seen 
people just like the people still in institutions who do so much better 
in the community--because no one expects you to do anything in the 
institution but survive.
    I love Special Olympics because they encourage us to focus on our 
abilities and to show off our abilities, not our disabilities.
    Some of the best support Donna and I have received has been from 
friends. When you live in the community, you make friends and they 
support you in your advocacy, and in raising your son when you have 
questions, and when you have to make major decisions in your life. When 
you live in the community, you don't have to depend on staff for all of 
your support, and you get to support others as well. You develop 
networks that you could never have in the institution. I've seen this 
happen for so many people, including people with severe disabilities.
    When I was in Forest Haven, I had a chance to go to the cottage 
that had the people with the most severe disabilities, who mostly 
stayed in bed all day. Someone at Forest Haven got a grant so that we 
went in, gave people musical instruments and played music while they 
played along. They loved it and never wanted to go back into their 
beds. When the grant ended, that program ended. If they had lived in 
the community, their music would not have stopped and wouldn't have 
depended on a grant.
    When I left Forest Haven, I was asked to be on the Mayor's 
committee that was set up to close it. It was a great day when the last 
person left Forest Haven in 1991.
    What I've seen is that when people are given a chance to grow and 
contribute, they grow and contribute. We ask that you ensure that 
people continue to be given chances to have good lives and to grow in 
their communities with support. I believe that people can do anything 
if they're given the opportunity and support.
    We can't go back. We can't go back to a time when people are moved 
against their will to places where they have no opportunities to learn, 
grow and contribute. We need to keep moving forward.
    People invested in me and my wife and brother. When we were in the 
institution, we didn't have a voice. We were thought to be incompetent 
so no one took the time to teach us things. But people can accomplish 
great things with support. Having an intellectual disability doesn't 
limit what you can contribute. Being put in institutions limits what 
people can do and guarantees that people will be dependent for the rest 
of their lives.
    Anyone can become disabled at any time. We are people just like 
everyone else. The time needs to be over for people to be sent to 
institutions because there aren't options in the community or because 
people think it's cheaper or more protected. It wastes people's lives 
and, in the long run, keeps them from contributing.
    There's no such thing as a good institution. Segregating people is 
always bad, people never grow in those places, and are safer and 
happier in the community.
    I'm one of many people who could be here today. People sometimes 
say that I'm not like some of the other people with intellectual 
disabilities. The only thing that's special about me is that people 
believed in me and in my potential to learn in spite of my disability, 
and they took the time to help me learn. Please protect people from 
places where no one expects anything from them and where they're just 
kept alive.
    We can't go back. It's time to move forward.
    Thank you for the opportunity to testify today and for your 
continued support of people with disabilities.

    The Chairman. You added an exclamation point to this whole 
hearing. It was great. Thank you very much, Mr. Thornton.
    In reading your testimony last night, you did not say this, 
but I am going to read it. I thought it was very profound. You 
said, ``People need to have high expectations for people with 
disabilities.''
    Mr. Thornton. Absolutely.
    The Chairman. High expectations. High expectations, 
``Because then it will give them opportunities to learn and 
grow. People do not grow in institutions.''
    Mr. Thornton. No.
    The Chairman. These are your words.

          ``There is no such thing as a good institution. 
        Segregating people is always bad. People never grow in 
        those places, and are safer and happier in the 
        community.''

Those are very profound words.
    I am going to ask you the same question I asked Messrs. 
Perez and Claypool at the beginning. We hear from a lot of 
families that are concerned. They are in their 60s-70s. They 
have an adult child maybe in their 40s-50s. They may be in a 
community setting now, but what happens to them later on? There 
is a great concern about the safety and well-being of their 
family members after they leave an institution.
    What do you say to people like that? I mean, your life and 
what you have done. What about the safety and the well-being of 
people?
    Mr. Thornton. Well, I think that we should not look at the 
institution as resolving that. I think that we should not think 
inside the box, but think outside the box with some positive-
ness. Because I think that families need to be assured that 
their children are safe and that they can grow because they are 
going to continue to grow with their ability. But if you put 
them back, look back at the institution or those types of 
settings, they are not going to grow but so much. So you want 
to take them out of that and continue to use their ability.
    I think that I heard some things about seniors as they get 
older, the city does not really have a lot for them. But I 
think that if you have senior citizens beautiful buildings, I 
am not knocking seniors. I love them. But if you can buildup a 
beautiful complex building and all this stuff with them, why 
can't we do it for people with disabilities right here in our 
community? I mean, we can think outside the box, and I think 
that will play a very important role.
    I do not think institutions are the key. I think nursing 
homes are not the key. Let them be out. Let them be free. Let 
them see more and more what the community has to offer, but 
think outside the box, not in the box.
    Thank you. I do not know if that answered the question.
    The Chairman. But that is exactly right. I just have a 
couple of questions here before my time completely runs out for 
both Secretary Landgraf and Commissioner Baugh.
    Could you please comment on how the implementation of the 
mental health parity law is impacting Olmstead efforts? This is 
a fairly new law, 3 or 4 years old. Are there things the 
administration has done or should do on mental health parity 
that would assist your efforts? So address yourself to mental 
health parity.
    Commissioner Baugh, you spoke about that.
    Ms. Baugh. Yes, sir. Thank you.
    I think that the beginnings and the intent of the mental 
health parity and the law has been very important with regards 
to Olmstead and access to treatment, and treatment being equal.
    For example, an individual that has a pancreatitis attack 
may go into the hospital indefinitely. But if you have a mental 
health episode, you have to get preapproval and you can only be 
in there a day or two. And so the intent of the law with access 
to treatment and equality in treatment has been very profound.
    However, the actual implementation of it, I think at least 
in Alabama, it has been challenging because there has been no 
clear cut guidance on minimum requirements for States to meet 
with regards to mental health parity.
    For example, you get X-amount of benefits for inpatient 
stay or different types of things that are important with 
regards to mental health parity. And even more important with 
regards to Olmstead implementation because right now because of 
the disparity with insurance coverage, with regards to 
accessing treatment, still many people believe the only place 
you can access adequate treatment is in a large State 
institution.
    And if we are going to truly implement Olmstead and truly 
have integration, then individuals should have choice of care, 
choice of provider, and choice of treatment. And right now, not 
having even a baseline minimum standard, I think, is an 
opportunity that could help many States with the full 
implementation.
    The Chairman. I thought the one point you made in your 
statement I wrote down is that you estimated that it cost 
Alabama $150,000 per year for an institutionalization, but it 
cost $60,000 or less for supportive services in a community.
    Has this concept taken hold in Alabama and do people begin 
to realize that not only do they save money, they make people's 
lives better?
    Ms. Baugh. It has, and that is a great question, Senator. 
It has taken hold and it is beginning to take hold.
    I failed in my initial summary to say that we are also in 
the process of closing two more psychiatric hospitals in 
Alabama by the end of this calendar year. And we are really 
making not only a clinical case for it being the best 
treatment, but also a fiscal case. And many people in our State 
are finally realizing you actually can get more appropriate 
quality and better treatment at the community, and also it 
being more cost effective.
    Not to negate my employees and our State institutions, they 
are wonderful, but the nature and the environment that they 
deliver their care is the issue because when you have a large 
number of individuals under one or two roofs, and you are 
trying to get them to take medications or go take their baths. 
I mean, it is all a schedule. And like you said, nobody is 
thinking. You do not have to think. The staff did it for you, 
and is that really the best environment? And in my opinion, it 
is not, not for long-term care.
    The Chairman. Well, my time has run out. I have some 
followup questions for Secretary Landgraf. I will do that on 
the second round.
    Senator Enzi.
    Senator Enzi. Thank you, Mr. Chairman.
    Mr. Thornton, I want to thank you for your testimony. I am 
impressed with anybody that has had a job for 35 years.
    [Laughter.]
    Or 22 years, as you have mentioned your wife had, and that 
was even before the Olmstead Act.
    How did you come to get that job?
    Mr. Thornton. Well, I was at a special education school. I 
went to special education, and I went over as a volunteer 
training, learning skills on how to do shelving of books and 
stuff. And then later on, they had a backlog. I just showed 
that I could do more than just do seals all day.
    I went there and I got a call to come back. They had a 
backlog of books, and they needed some help, and I came in as a 
part-time employee. Then ever since then, I have been there.
    And what I do is, I keep the Special Olympics Team. I 
always say, ``Teamwork makes the dream work.'' So if a part of 
your team, we are going to make it work, if they just believe 
it. But now, I am reaching out for others, hoping they would 
bring more on. There are a lot of us out there.
    Senator Enzi. Well, thank you for all the effort you are 
doing there.
    Mr. Thornton. Thank you, Senator.
    Senator Enzi. One of my favorite people, a librarian in 
Gillette, WY, is very meticulous in her work, and has never let 
me put a book back. And she has also been a very loyal 
employee, and done a great job.
    For Secretary Landgraf and Commissioner Baugh, 
transitioning individuals with disabilities into a community-
based setting requires a focus on a full range of services, 
health care, social services. We mentioned transportation, 
housing.
    It seems that most of the funding historically available to 
States for implementing this comes from the Medicaid program 
and, of course, the Medicaid program has a required match. Has 
this presented an obstacle for your State in transitioning 
people with disabilities to this fully integrated community-
based setting? And what can we do to better accommodate that 
range of facilities and services?
    Ms. Landgraf. Thank you, Senator. That is a great question.
    I am very fortunate because the Medicaid program falls 
under my leadership at the Department of Health and Social 
Services. In addition, all disability services are under our 
Department, so we kind of break down those silos in that it 
falls within our Department. And our Medicaid program, 
actually, we see that as an opportunity to advance inclusion 
for individuals with disabilities, and it is how we utilize 
that funding. I believe the Commissioner and I both agree that 
we need that flexibility.
    And relative to Medicaid funding, we need to approach it on 
an individualized fashion. Whatever individuals will require in 
order to be included within their communities, the funding 
should follow that individual, Money Follows the Person, which 
enables us to actually transition individuals out of long-term 
care facilities is a first step relative to that level of 
flexibility.
    But we also have to encourage that level of flexibility 
across, what I call, across the cabinet. Housing becomes very 
critical. We now, along with our State housing authority, have 
a voucher program called the State Rental Assistance Program. 
When I talked a little bit about in my testimony, people with 
disabilities have a further disadvantage in that they are of 
extreme poverty level which means if they are to exit or if 
they are to maintain a high quality level of life within the 
community, they need to be financially empowered in order to 
succeed in that.
    So we want to use all our Government funding in a way that 
it supports people on an individualized fashion across that 
domain, not just relative to Medicaid, but also there are other 
Federal and State programs that will afford them that access.
    Senator Enzi. Thank you.
    Commissioner Baugh.
    Ms. Baugh. I think the challenge for Alabama right now is 
coming up with the match money for Medicaid. I think that we 
are applying for many grants through the Affordable Care Act 
that is going to assist us with the 90/10 match for the next 2 
to 3 years. However after that, looking at sustainability is 
where we have great concern.
    With regards to match money, we would be happy to take any 
match money, Senator, you would like to send our way.
    [Laughter.]
    Although in this fiscal environment, I am not sure that 
that is an option. However, it does present a challenge when 
you look at sustainability long term.
    Senator Enzi. Thank you, and my time is almost up.
    The Chairman. Thank you very much, Senator Enzi.
    Senator Franken.
    Senator Franken. Thank you, Mr. Chairman.
    Secretary Landgraf, Minnesota has a very sophisticated home 
and community-based system to support seniors and people with 
disabilities.
    In Minnesota, people who receive homecare are protected by 
a ``Homecare Bill of Rights,'' that guarantees that they will 
have the same right to information, and protections against 
abuse and neglect, as people who live in nursing homes do, but 
unfortunately, this is not the case everywhere.
    We know that it is better for everyone--for patients, for 
families, and for the Federal budget--when our loved ones can 
get the care that they need at home instead of in a hospital. 
And I think you will agree that no one should have to worry 
that they will not receive the same quality of services in 
their communities as they would in a nursing home or a 
hospital. And that is why I introduced my Home Care Consumer 
Bill of Rights Act which would require all States to develop 
similar protections for seniors who receive homecare. But I 
wonder if these protections are needed for people with 
disabilities who are under 65 and opt to receive community-
based services and support.
    So my question is: Is there more we should be doing to 
provide people with disabilities the information they need to 
make sure that they can make informed choices when they receive 
community-based care?
    Ms. Landgraf. I will give you a resounding ``yes,'' to 
that.
    I think, in Delaware we have expanded our long-term care 
ombudsman program, which is an advocacy and independent 
advocacy program that goes into those particular facilities. We 
have expanded that into the community now for that very reason, 
and it is inclusive, not only of our senior population, but 
also of individuals with disabilities.
    The issue we have is that we need to apply more resources 
in that area. So individuals have an advocate that is 
independent from the system that they can work with as well, 
and I think education at any level. I mean, I think Ricardo is 
an extreme example of independence and that Ricardo's level of 
education and empowerment shows that he is a full participating 
member of our society, and he can speak out not only for 
himself, but for others.
    I believe that inclusion, too, actually protects people 
more so than segregation because we build those natural 
supports. And we, as a society, have a tendency to actually 
look out for one another when we build relationships with one 
another, and that happens in the community.
    So I believe the protections that you are working toward 
for our senior population should, indeed, also include those 
with disabilities.
    Senator Franken. Thank you.
    Commissioner Baugh, you mentioned that you have had some 
challenges implementing the 2008 mental health parity law.
    What could the Federal Government do to help you fully 
implement this law? Has the fact that the administration has 
not released a final rule hindered your implementation efforts?
    Ms. Baugh. That is exactly the case, Senator, not having a 
final rule with very clear cut, basic, federally mandated 
requirements of minimum coverage that has to be in any kind of 
parity act has been a huge barrier to implementation. The 
sooner we are able to have that, I think, the sooner it sets 
the groundwork, or a framework, for individuals to be able to 
access treatment in settings other than in a large State 
institution.
    To me, that is a huge step in the direction toward 
integration, full integration, having choice of care, choice of 
provider, and appropriate resources.
    Senator Franken. Thank you.
    Mr. Thornton, thank you for your testimony here today. In 
your written testimony, you mentioned you have been working at 
the Martin Luther King Library for 35 years. We have heard from 
some other panelists about the importance of providing people 
with disabilities with an opportunity to engage in their 
community.
    Can you discuss what it means having a job for you and a 
mainstream job, not a work-shop job as you mentioned?
    Mr. Thornton. It means that I am able to reach some goals 
like purchase an automobile. I want to be part of a community 
and I can go. We just recently moved into a new home, my wife 
and I and my son, who is now a daddy himself.
    A question asked to him said, ``What is it like to have a 
father and mother who has a disability raise you? What was that 
like to you?'' And he told the person, he said,

          ``You know what? They were just like anyone else. 
        They loved me. They supported me. They carried me 
        through hard times when I did not understand, they 
        worked for me. And they have a support system in place 
        to help me get along, to get to school.''

    He graduated from high school, and that is community.
    I educate him a lot. He is probably tired of me giving him 
advice. We talk a lot. But I think just a lot of stuff there 
and my wife would tell you. She would say, ``Oh, Lord, he is 
going to bore him again. Oh, God.'' But it was to teach him 
that just because we have a disability does not mean that we 
cannot teach you. We go out and find resources that will help 
us help explain to you what it is that you deal with. He is a 
lot more comfortable with that and confident.
    Educating others is the key. I found in the community, as 
we educate them and give them stories, that is one of the 
greatest things we can give--success stories.
    Senator Franken. Well, my guess is that you are a wonderful 
father.
    Mr. Thornton. It is a lot of work, though.
    Senator Franken. I know. I know.
    The Chairman. But how is he as a grandfather?
    [Laughter.]
    Senator Franken. Well, I am hoping----
    Mr. Thornton. Thank you.
    Senator Franken. To be one myself. No pressure on my kids.
    [Laughter.]
    Thank you, Mr. Chairman.
    Mr. Thornton. Thank you.
    The Chairman. Thank you very much, Senator Franken.
    Secretary Landgraf, you were present at this full-day 
session in Connecticut that we had a few weeks ago.
    Your Governor was there, Governor Markell, and he is now 
going to take over the National Governors Association 
beginning, I think, next month and he was there for the entire 
day. And he has committed himself as the head of the NGA to 
focus on employment of people with disabilities through the 
National Governors Association. Hopefully in the next year we 
will see more Governors focusing on this in their States, 
again, at a time when the private sector is now beginning to 
expand its employment of people with disabilities. I mentioned 
the Chamber of Commerce and their commitment to this.
    I guess what I want you to address yourself to is, I do not 
need to have a whole encyclopedia, but what are some of the 
things that you see? You have been on both sides of this issue. 
You have been an advocate and now you are Secretary, not that 
you are not an advocate, but you have been on both sides of 
this.
    What is it that we should be thinking about doing here to 
really help move this along where Governors are now, the 
private sector, the idea of getting people out of institutions, 
getting them competitive employment? Give me two or three 
different things that you would like to see us address 
ourselves to.
    Ms. Landgraf. Well and again, I think it is important when 
we talk about employment that we--I indicated an ADA 
Ambassador. But one that really can--and all of us should be 
responsible for that, for educating businesses, for educating 
ourselves. Public entities are also businesses, so to speak, 
and we can do a better job at employing individuals with 
disabilities.
    The private sector, what we saw in Connecticut, major 
corporations are stepping up to the plate, and they see this as 
a tremendous opportunity for their bottom line. Not necessarily 
a charity, but they value all employees, including people with 
disabilities.
    I believe at the distribution center that Walgreens has in 
Connecticut, the story that I found most compelling was 
relative to their safety as well, because many times employers 
will believe that it might be unsafe to hire someone with a 
disability. They are finding just the opposite, especially with 
individuals who are deaf and hearing impaired and who are their 
fork-lifters. And they are actually having those who are not 
deaf and hearing impaired now wear earplugs because they found 
out that it actually keeps them from being distracted while 
they are operating the forklift. So again, it was a teachable 
moment.
    So I believe from the employment perspective that we have 
to work collectively, again, across the Government. We have the 
Division of Vocational Rehabilitation. My Department actually 
does the follow along services relative-supported employment. 
From a benefits package, again, that is a good use of our 
Medicaid dollars to really focus on: how do we utilize those 
dollars in the best way to enable individuals to become self-
sufficient?
    Employment is the opportunity to enable individuals to 
become self-sufficient. It is better for the individuals, and 
they have some funding, and they have their own power. I 
believe that money is power and when people are disenfranchised 
based on poverty it only further challenges the individual. So 
we, as the public sector, need to focus our programs on 
empowerment and, again, a meaningful work and a meaningful wage 
enables people to become empowered.
    We need to look at the Medicaid buy-in program because I 
hear from family members and individuals with significant 
disabilities that some of their concern in accessing employment 
is relative to the fact that they might lose their Medicaid 
benefit. And Medicaid operates a little bit different than 
other health insurance. Medicaid provides personal attendant 
services that a private insurer may not provide, so individuals 
do not want to lose that.
    So we need to kind of look at, from a public policy 
standpoint, both at the Federal level and the State level with 
the ADA at the top of that list, how do we change that paradigm 
and benefit to really focus on how do we enable people access 
to their community's employment, transportation, housing, and 
health care?
    The Chairman. Very good because my staff just handed me, 
Andy just handed me this list of the different tools in 
Medicaid to provide community-based services. There are: one, 
two, three, four, five, six that I have right here--six 
different parts of the code.
    There is a Medicaid Rehabilitation and Personal Care Option 
1396d(a)(13), then there are home community-based waivers 
section 1396n(c). Is this good? Should this not all be 
together?
    Commissioner Baugh, I see you smiling about that, all the 
different silos we have here. How do we wade through all of 
that stuff?
    Ms. Baugh. Well, actually, one of the challenges at the 
State level is trying to figure out where do you go to get what 
for this little piece.
    The Chairman. Yes.
    Ms. Baugh. When it could be something more simple, where 
you go to one place, you get X-amount of money, and this is 
what you say you are going to accomplish with those dollars, 
and actually have a level of accountability based on evidence-
based outcomes.
    The Chairman. There you go.
    Ms. Baugh. Not only, for the clinical quality, but fiscal 
quality as well.
    The Chairman. I think we ought to take a look at how we can 
consolidate some of these things, all these little different 
lines.
    Excuse me, Senator Enzi, do you have any questions?
    Senator Enzi. Thank you, Mr. Chairman.
    Commissioner Baugh, in your written testimony you called 
for more collaboration between the Federal agencies, and 
consolidating and streamlining mandates. I think this fits with 
what Senator Harkin was just talking about, access to Federal 
programs that meet the initiatives of the Olmstead efforts.
    Can you expand on why this is needed and what we should do 
from your perspective to increase this collaboration of the 
Federal agencies?
    Ms. Baugh. Yes, sir, and that is a great question.
    Some of the challenges that we face, or currently face as a 
result of our downsizing efforts, is housing and the lack of 
housing for individuals that are currently living in 
institutions. And sometimes, although this is changing now 
because of the collaboration at the Federal level, sometimes 
the policies for CMS and Medicaid may conflict with Olmstead 
implementations.
    For example, supportive employment would be a good one, 
integration and support of employment and fully integrating 
back into society is something that is inherent in Olmstead. 
And you do not want to just move them from one large 
institution to a mini institution, and let individuals sit 
there, because you are not integrating, and they are not 
thriving and becoming part of the community.
    Well, if they go into supportive employment or full 
employment, then they lose their Medicaid or Medicare benefits. 
And like the Secretary was saying, the benefits for Medicaid 
and Medicare are different than on other private insurance that 
provides the supports to allow an individual to work. And so, 
that would be one example.
    Another example would be housing vouchers. Do our State 
housing people know what the Federal housing authority is doing 
with regards to housing vouchers? And is there a disparity 
among States with implementation of HUD vouchers? Is there a 
disparity among States with regards to implementation, or 
requirements for grants through CMS or other Federal agencies? 
So those would be some examples I would use.
    Senator Enzi. Secretary Landgraf, would you like to answer 
that too?
    Ms. Landgraf. I would like to touch upon the Commissioner's 
comments relative to housing because it is something we have 
just come up against in Delaware with our State rental 
assistance program, and how we are administering that through 
the housing authority.
    We are finding that for people with serious, persistent 
mental illness, they typically have issues relative to the 
criminal justice system. It is the nature of the disease. So 
many times they get caught up in the criminal justice system.
    HUD has some requirements relative to who can be housed in 
Section 8 housing, and if they have a criminal background. And 
what we are finding with our vouchers, they are asking that 
everyone that we refer to the voucher program go through a 
criminal background check and that is very stigmatizing for the 
population. And we know that mostly individuals will come up 
with some type of criminal justice activity just by virtue of 
their disability, of serious persistent mental illness.
    So we are relying on the ADA to say, ``We need a reasonable 
accommodation.'' And that we now at the Department of Health 
and Social Services will be the one that guarantees to the 
housing authority that this individual is able to access these 
vouchers and rental programs. I believe HUD has a restriction. 
If you have been engaging in methadone is one area that they 
will not allow the individual to be housed or if you are a sex 
offender.
    Now we are responsible regardless. So I call those 
individuals the unacceptable individuals for the vouchers, but 
then I am guaranteeing to our State housing authority that we 
have done a level of background. I do not do full criminal 
background checks, but I rely on my team to validate that the 
people we are putting in housing are those individuals that 
will comply to the Section 8 housing code, and then we are 
responsible for housing the others.
    But that is how discrimination sometimes comes down and how 
these programs actually end up conflicting. But we are making a 
commitment and I am working this through with the housing 
authority. But again, I think reasonable accommodation is the 
key and how we look at reasonable accommodation. I think many 
States are familiar with reasonable accommodation relative to 
tangible things like ramps and accessibility from that 
perspective.
    But when you start talking about, at this level, we really 
need to have that conversation and look at reasonable 
accommodation as part of the ADA, and enabling people to have 
access to their communities.
    Thank you.
    Senator Enzi. Well, you all have given us a lot to think 
about and I am out of time, but I am going to submit a question 
to each of you.
    Because one of the things I run into in my State, and other 
places, is people that want something done with employment laws 
so that they can find the employees that they need. And I ask 
them a little bit about what type of a job they are talking 
about. And I say, ``Have you ever considered people with a 
disability?'' They say, ``What kind of disability?'' And we 
work through that problem a little bit too. And then their 
final question is, ``That would work. Where would I find 
them?''
    I am going to be asking in this written question, which I 
want you to take some time and think about, how can we have 
some kind of a clearinghouse so that the people that need the 
jobs can find the jobs, and the people that need the workers 
find the workers? And we wind up with this very competitive 
situation for people with disabilities.
    Thank you for your testimony. Appreciate it. I am going to 
have to run.
    The Chairman. OK. Thank you, Senator Enzi.
    I will close up here. I would like to thank all of the 
witnesses for their testimony and insights on the progress we 
are making under Olmstead. That was the purpose of this 
hearing--tomorrow is the 13th anniversary--to promote community 
integration for people with disabilities. We appreciate you 
making the time in your busy schedules to travel here and share 
your expertise.
    In the past 2 years, we have continued to make significant 
progress in expanding home and community-based services and 
supports that allow people with disabilities to live, work, and 
participate in their communities. To further encourage this 
progress, Congress has provided States with a variety of tools 
including the Community First Choice Option to help them comply 
with Olmstead, and making it easier for them to provide 
services for people with disabilities in integrated settings.
    Now today, I have instructed the GAO to release a study 
that I requested on the degree to which States have already 
taken advantage of, or are planning to use, these new tools for 
financing home and community-based services and supports that 
were included in the Affordable Care Act.
    Tomorrow, I will send a letter to each Governor reminding 
them of these tools and asking them to report to me on their 
State's efforts to implement Olmstead, and to share their best 
practices, and to let me know if there are additional things 
the Federal Government can do to assist them in their efforts 
to comply with the ADA's integration mandate.
    I just want to point out that the new GAO report says that 
Mississippi spends the lowest amount of any State on home and 
community-based services as a percentage of their total 
Medicaid spending on long-term services, 14.4 percent; the 
highest was New Mexico at 83 percent; everybody else is in 
between; and to share best practices.
    We all come from different regions of the country. For 
instance, I am from Iowa. We tend to associate more with 
Nebraska, and Illinois, and Missouri, the States around us. 
Here is Alabama doing a very good job, right next door to 
Mississippi and Louisiana, which are way down there at the 
bottom. I am hoping your Governor will reach across, and start 
working that region, and showing people what can be done.
    I might add that my charts show me that Alabama and my 
State of Iowa are pretty close to the same, but we are not the 
best, but we are doing better. We are somewhere between 25 and 
49 percent right now. But I am asking that the GAO release this 
study today so that people will know where they are.
    I really do want Governors to tell us what their best 
practices are, and to reach across State lines to let others 
know what they can accomplish.
    I thank you all very much for what you are doing.
    We will leave the record open for 10 days to allow 
additional statements, or supplements, to be submitted for the 
record.
    I thank you for coming here early because, I see now, our 
time has run out, and we have to get over and start voting. So 
thank you very much.
    The committee will stand adjourned.
    [Additional material follows.]

                          ADDITIONAL MATERIAL

      Prepared Statement of the National Disability Rights Network
    The National Disability Rights Network (NDRN) would like to thank 
Senator Harkin, Senator Enzi and the members of the Senate Committee on 
Health, Education, Labor, and Pensions for holding a hearing on the 
topic of enforcement of the U.S. Supreme Court's decision in Olmstead 
v. L.C.\1\
---------------------------------------------------------------------------
    \1\ Olmstead v. L.C., 527 U.S. 581 (1999).
---------------------------------------------------------------------------
    NDRN is the national membership organization for the Protection and 
Advocacy (P&A) System, the nationwide network of congressionally 
mandated agencies that provide legally based advocacy services to 
individuals with disabilities. A P&A agency exists in every State, the 
District of Columbia, Puerto Rico, and territories (Guam, U.S. Virgin 
Islands, America Samoa, and Northern Marianas Islands). P&A agencies 
have the authority to provide legal representation and other advocacy 
services, under Federal statutes, to all people with disabilities. 
Collectively, the P&A System is the largest provider of legally based 
advocacy services to persons with disabilities in the United States.
    Since the Supreme Court ruling, the P&A System has been a leader in 
enforcement efforts of Olmstead v. L.C. in the United States. The 
unique role that the P&A System plays in the Federal enforcement scheme 
was recognized by the 7th Circuit Court of Appeals, which stated in a 
case involving the Indiana Protection and Advocacy Service (IPAS) that 
``the special Federal responsibilities it carries out, and the direct 
Federal funding it receives, IPAS is closer to being a specialized 
agent of the Federal Government for these purposes than it is to being 
an ordinary State agency.'' \2\ Furthermore, the U.S. Department of 
Justice has recognized the P&A System has ``a central role in ensuring 
that the rights of individuals with disabilities are protected, 
including individuals' rights under title II's integration mandate.'' 
\3\
---------------------------------------------------------------------------
    \2\ Indiana Protection and Advocacy Services, 603 F.3d 365 (7th 
Cir. 2010), cert. denied, 563 U.S. 6 (April 25, 2011).
    \3\ U.S. Department of Justice, ``Technical Assistance Guide'', 
available at http://www.ada.gov/olmstead/q&a_olmstead.pdf.
---------------------------------------------------------------------------
    As the U.S. Department of Justice stated on the 10th anniversary of 
the Olmstead decision, and remains true today, the ``the goal of the 
integration mandate in title II of the Americans with Disabilities 
Act--to provide individuals with disabilities opportunities to live 
their lives like individuals without disabilities--has yet to be fully 
realized.'' \4\ In March 2011, President Obama met with Ms. Curtis, who 
was one of the lead plaintiffs. Ms. Curtis has multiple disabilities, 
and was finally given the opportunity to live in the community, 11 
years after the Supreme Court issued the decision. Today, Ms. Curtis 
sells artwork and lives in her community.\5\ Unfortunately, not all 
persons with disabilities are afforded the same opportunity. For 
example, according to State of the States in Developmental Disabilities 
(2011), although the number of individuals with developmental 
disabilities served by public and private institutions for 16 or more 
people has decreased, 92,300 people remain institutionalized in these 
facilities.\6\
---------------------------------------------------------------------------
    \4\ U.S. Department of Justice, ``Statement of the Department of 
Justice on Enforcement of the Integration Mandate of Title II of the 
Americans with Disabilities Act and Olmstead v. L.C.'', available at 
http://www.ada.gov/olmstead/q&a_olmstead.htm.
    \5\ See U.S. Department of Justice, ``On Anniversary of Olmstead, 
Obama administration Recommits to Assist Americans with Disabilities'', 
available at http://www.whitehouse.gov/the-press-office/2011/06/22/
anniversary-olmstead-obama-administration-recommits-assist-americans-
dis.
    \6\ David Braddock, Richard Hemp, Mary C. Rizzolo, Laura Haffer, & 
Emily Shea Tanis, THE STATE OF STATE IN DEVELOPMENTAL DISABILITIES 51 
(Colo. U. ed., 2011)(1977).
---------------------------------------------------------------------------
    NDRN is pleased that Disability Rights Oregon (DRO), the Oregon P&A 
agency, has taken the lead in a recent innovation in the area of 
enforcement of Olmstead, through the class action lawsuit of Lane, et 
al. v. Kitzhaber, et al. CV-00138-ST (D. Or.). DRO argued on behalf of 
the class plaintiffs that the Olmstead decision should be applied when 
persons with disabilities are unnecessarily segregated in work that 
denies persons with disabilities the opportunity to interact with 
persons without disabilities because of the way employment supports are 
managed and funded in the State. The class plaintiffs were individuals 
with intellectual or developmental disabilities that live in the 
community; are eligible for services from the Oregon Department of 
Human Services; and are able to and would prefer to work in integrated 
employment opportunities. Although, the court dismissed the complaint 
with leave to amend it, in the decision, the court held that Olmstead 
applies to the State's provision of integrated employment services (or 
failure to provide them).
    NDRN and the P&As believe that while it is important to continue to 
focus on the enforcement of Olmstead to ensure persons with 
disabilities are living in the community and not in institutions, part 
of this enforcement effort must include ensuring that communities are 
safe and provide the services and supports the person needs as they 
transition from institutions to community living. During the closing of 
the last public institution for persons with developmental disabilities 
in Alabama, the Alabama Disability Advocacy Program (ADAP) took a 
strong advocacy role in working with the State to ensure that the 
residents of this institution were transitioned into the community 
where they were going to receive the services and supports they 
required, and necessary followup was provided to ensure they were safe 
and receiving these services and supports once they were living in the 
community. NDRN commends the partnership between the State and ADAP and 
would strongly suggest that this community monitoring partnership be 
continued throughout the country.
    Last, NDRN believes it is important in the context of discussing 
the enforcement of Olmstead to address the concerns of some that the 
concerns and opinions of guardians and family members are not being 
properly considered in either class action lawsuits or U.S. Department 
of Justice settlement agreements. Contrary to that opinion, current 
judicial rules provide opportunities for all parties to have the chance 
for their voices to be heard in a fair and reasonable manner by 
providing the ability to intervene in a case action lawsuit as well as 
the opportunity to have their voices heard at mandatory fairness 
hearings at the conclusion of litigation. Class-action litigation is a 
cost-effective way to ensure that a group of individuals that are 
similarly situated are able to pursue the enforcement or protection of 
their civil rights. Two recent examples from Illinois and Virginia show 
that the current rules work in a fair and just manner, and do not 
require legislative change.\7\
---------------------------------------------------------------------------
    \7\ See Ligas, et al., v. Hamos, et al., No. 05 C 4331 (N.D.I.L. 
June 15, 2011)(final consent decree), available at http://
equipforequality.org/resourcecenter/LigasConsentDecreeSigned_0615
2011.pdf; U.S. v. Va. No. 3:12 CV 059 (E.D. VA, June 2012).
---------------------------------------------------------------------------
    NDRN and the P&A System stands ready to work with Congress and 
Federal agencies to ensure the strong enforcement of Olmstead v. L.C.  
We would be happy to provide more information about the work that the 
P&A System has done to advocate for people with disabilities in regards 
to community integration.
                                 ______
                                 
                                   ADAPT Community,
                                              July 6, 2012.
Health, Education, Labor, and Pensions Committee,
U.S. Senate,
Washington, DC 20510.

    Dear Chairman Harkin, Ranking Member Enzi and Members of the HELP 
Committee: ADAPT is a national grass-roots community that organizes 
disability rights activists to assure the civil and human rights of 
people with disabilities to live in freedom. We are submitting this 
written testimony on behalf of the ADAPT Community and the many 
thousands of people with disabilities who want to have a REAL CHOICE so 
that they may live full and productive lives in the community.
    ADAPT respectfully submits this written testimony in response to 
the recent committee hearing, ``Olmstead Enforcement Update: Using the 
ADA to Promote Community Integration'' (June 21, 2012).
    The 1999 U.S. Supreme Court Decision in Olmstead v. L.C. and E.W. 
was a landmark decision that recognized the right of people with 
disabilities to live in the community instead of being locked away in 
institutions. This decision represents the promise of freedom for 
Americans with disabilities, but it has become clear that this will be 
an empty promise without adequate enforcement and CMS policies that 
require States to implement this decision.
    The Supreme Court correctly noted that the:

          ``[i]nstitutional placement of persons who can handle and 
        benefit from community settings perpetuates unwarranted 
        assumptions that persons so isolated are incapable or unworthy 
        of participating in community life''

and ``institutional confinement severely diminishes individuals' 
everyday life activities.'' Olmstead v. L.C. ex rel. Zimring, 527 U.S. 
581, 583 (1999). While the Supreme Court's words are powerful, ADAPT 
believes that the REAL VOICES of people who have been or are still 
trapped in institutional settings are critical to understanding this 
issue.
                       Jeff Arrison, Corning, NY
    Jeff was preparing for college when he had a single car accident in 
1980. This resulted in him becoming a quadriplegic. From age 20 onward 
Jeff would pretty much be in Medicaid institutions.
    He had been planning on completing his education, getting a job, 
getting married, and having children. Medicaid institutionalization 
ended this plan. Although he made over one dozen serious attempts, he 
never was able to ``break free'' from Medicaid's grip. Even when his 
counselor said to him ``we will get you out of that nursing home,'' he 
remained there.
    Jeff knew that he was capable of managing an apartment because for 
a while he had an apartment of his own from 1981-84. Due to the fact 
that Social Security and Medicaid and the State of Massachusetts did 
not live up to their word about available community services, he 
returned to institutionalization and was never able to ``escape'' 
again.
    Right now Jeff is institutionalized in Founder's Pavilion Nursing 
Home, a very inappropriate place for him, but the only place available 
in his hometown of Corning, NY. He ``rots'' there with little hope of 
returning to society.
    His day begins at approximately 10:30 (he says any nursing home is 
pleasant when you are asleep, so he tries to sleep as much as 
possible.) After getting morning ``hygiene'' he exists by having lunch 
(he worked in kitchens before his accident so he knows what kitchens 
are capable of, this kitchen doesn't even try). Adequate nutrition is 
maintained by ``junk food.'' After lunch he gets through the afternoon 
by watching boring television, napping, etc. Keeping him appropriately 
entertained would be impossible if it were not for his relatives 
pooling their efforts and purchasing him a computer to keep him busy 
(when he asked the State to help him finance the computer they said, 
``No''). Then another meal of inadequate dinner is served. Followed by 
doing the days business (like correspondence) and more television. This 
is followed by his evening ``hygiene'' at approximately 10:30. Then at 
approximately 1:30 a.m. he goes back to sleep.
    He has had to endure such things as broken and dislocated bones, 
inadequate doctors care, physical ``forcing,'' unpleasant social care, 
medications that is prescribed or requested being often more than 1-
hour late without immediate correction. After many years of non-action 
about ``problems'', he has come to the conclusion that Medicaid 
institutions ``just don't care.''
                      Paula Barton, Rochester, NY
    My name is Paula Barton. I am a 28-year-old disabled female. After 
going to emergency with chest pain, I was sent to a nursing home. They 
told me I could not return to my apartment because I could not get any 
Nurses Aide service to get me in and out of bed. I was there for 4 
months.
    During my stay in the nursing home, the experience was not good. 
Here are some of the reasons why. The hospital was not geared for a 
young person. I could not move freely and I had to be signed out by a 
person who was not in a nursing home. I had no independence.
    I did have one good experience. The social worker was a young 
woman. She understood what I was going through. She started a month 
after I arrived there. Together we found an agency that would give me 
aide service. I am now home after 4 months. I have 20 hours of aide 
service and I'm doing very, very well.
    Barrie Berliner, Gloversville, NY (Institutionalized for 1 Year)
    I, Barrie Berliner, was in a nursing home because I fell off a 
balcony and the nursing home was not a place for me to spend the rest 
of my life. With financial supports funded by the Department of Health, 
I moved into a house with a few housemates where the care is great. I 
have my own room with my own things, help to cook my own meals and I 
have all my workout equipment in the living room and it is basically my 
own home.
    At the nursing home, I had room assigned to me and there were 
elderly people there and it was very regimented. Being a spontaneous 
person, I couldn't go out with my friends. It was very strict, there 
were strict rules and I hated it there. I felt almost dead. It was 
because of the physical therapy at Lexington, I can walk by myself and 
before, I couldn't walk by myself, I couldn't transfer. I needed a lot 
of help. Now I need no help. I am so independent. I couldn't even take 
a shower before. Now, I can take a shower by myself and I can take a 
shower everyday. Lexington Center has done wonders for me. They've done 
so much. There is personal help. Instead of being fed, they taught me 
how to feed myself, which in the long run, made me feel great. Nobody 
wants to be fed for the rest of their life. Independence is great.
    I am a true testimony of what not living in a nursing home can do 
for you. Do they want to be waited on or do they want a free 
independent life? A choice of freedom. This is America.
        Marie Brawn, Eastern, KY (Instutionalized for 20 Years)
    I was born in Eastern, KY in 1953. I have Cerebral Palsy. It 
affects my limbs and speech. I was institutionalized from age 2 until 
27. I will tell you of things that happened to me during this time. I 
was drugged so I wouldn't talk about what I heard or saw. I saw 
physical abuse. People were being hit. I went to school wearing dirty 
clothes. I had to wait a long time for help to the bathroom. I had very 
little privacy, even when talking on the phone or to my priest.
    Some of the aides would make fun of me.
    Things are now changed for me. I have been out for 23 years because 
my second husband got me out after a big fight. He died in 1994 from a 
heart attack. Then with the assistance of personal attendants, I 
learned to live on my own. I have a part-time job working for the 
Salvation Army collecting money. I have a pet cat named Shadow. As a 
child in an institution, I could never have a pet.
    I know a lot of people in institutions who want and need to get 
out. It would cost the Government less to keep us in the community. I 
am glad to be out and to have more freedom. I can be my own boss.
       Kurt Breslaw, Boulder, CO (Institutionalized for 15 Years)
    You don't live in a nursing home; you only exist in a nursing home. 
I love living in my own house. I get better care in my own home then I 
ever did in the nursing home.
         Ella Dil, Gallup, NM (Institutionalized for 33 Years)
    I went to Los Lunas institution, then to Ft. Stanton institution, 
then to Santa Rosa group home, then to the MASH group home in Gallup.
    I never came home for Christmas or Thanksgiving. I was sad and very 
scared living in these places. I wanted to be with my family growing 
up, not in institutions.
    I have had my own apartment for years. I live by myself. I pay my 
own rent and pay for my food, and everything else I want. I work at 
Subway. I have worked there for many years. Now, I visit with my family 
on Christmas, Thanksgiving and when I want to on weekends.
 Paul Dorenkamp, Chesterfield, MO (Institutionalized for 2\1/2\ Years)
    I have been living with MS for over 10 years. I'm unable to walk 
and care for myself. When my care became too burdensome for my wife to 
care for me, I was placed in this nursing home. Since I arrived at this 
place, I've been sexually and physically abused. My needs and wants are 
ignored and neglected on a daily basis. I want to go home and live with 
my family. I want to watch my children grow up, because of the current 
Medicaid policies I'm trapped and imprisoned in this nursing home.
                        Katy Hoffman, Denver, CO
    I felt bad. I didn't want to be there. I cried all the time. I feel 
independent being on my own.
    Robert Fesel, Robbinsville, NJ (Institutionalized for 11 years)
    I am a man with Cerebral Palsy. In my life I have lived in a 
boarding home, a developmental center, and three group homes. I have 
been restrained, starved, burnt with cigarettes, and abandoned for 
dead.
    I use a wheelchair and I communicate via an electronic language 
board called a Liberator. Technology has changed my life. I now live in 
a condominium and work with preschoolers. I work as a volunteer to help 
other people move out of developmental centers.
    I have my freedom.
    I ask you if one of your daughters had a disability would you put 
her in an institution. PLEASE, PLEASE help us get people out of 
institutions and help get institutions out of our great Nation.
        Sheila Dean, Denver, CO (Institutionalized for 2 Years)
    I was 28 years old in a nursing home, and had a 7-year old son. I 
got out when I was 30, and I wouldn't trade my freedom for anything!
     Nathaniel Gates, Rochester, NY (Institutionalized for 3 years)
    My name is Nathaniel Gates and I have Multiple Sclerosis. In 1999 
while living independently, in Rochester, NY, I found out I needed 
spinal surgery. After my operation, I was sent to Monroe Community 
Hospital for rehabilitation. Following my rehab, I waited to return 
home. I was then told I could not live on my own because I couldn't 
walk. They told me I was unable to get aides to take care of me through 
a traditional Home Health Care Agency. For this reason I ended up 
staying at Monroe Community Hospital for the next 3 years. Living at 
the hospital was a big disappointment. It was very depressing and I 
felt the whole world was passing me by.
    The Center for Disability Rights has helped me to get an apartment. 
I have hired my own aides and live independently. I'm happier now and 
I'm my own boss again. It's like being on top of the world.
         Rick James, Denver, CO (Institutionalized for 5 years)
    It was fucking hell, and it is better in my own home.
     Herb Larkins, Philadelphia, PA (Institutionalized for 5 years)
    I was robbed of my freedom to come and go as I pleased. They took 
away my dreams and independence and what I was capable of doing. I was 
robbed of my privacy and my ability to have company when I wanted it. 
They took away my right to speak up for myself and to speak my mind.
    These are the voices and stories of Americans with disabilities who 
have been forced to give up their freedom and many of their rights in 
order to get the personal assistance services they need to live. These 
are the voices that must be heard. While parents and providers may have 
their points of view, ultimately, the Olmstead decision is about these 
individuals who have been or still are institutionalized. While each of 
these people have their own individual stories and experiences, they 
all agree that they would rather be in their own home in the 
community--like every other American--rather than locked away in 
institutions.
    ADAPT acknowledges the efforts of the Department of Justice under 
the Obama administration to enforce the Olmstead decision, however, we 
are concerned that Olmstead enforcement has been driven by key 
personnel within the Obama administration and Olmstead compliance is 
being determined on a case-by-case basis. Because compliance is 
determined on a case-by-case basis, there are no clear benchmarks for 
States that set the minimum standard for Olmstead compliance. 
Inevitably, the administration will change, and we are concerned that 
the gains we have made over the past few years will be quickly lost.
    ADAPT has developed a list of issues to consider when developing 
benchmarks for Olmstead compliance related to people with disabilities 
who are institutionalized in nursing facilities or are at imminent risk 
of institutionalization in nursing facilities.
    This list is attached at the end of this testimony. ADAPT 
acknowledges that minimum standards often become the maximum that can 
be expected. However, ADAPT believes that there is an even greater risk 
of allowing Olmstead compliance to be defined in the current manner 
which can continually be reinterpreted. This is particularly concerning 
in the context of State budget crises and initiatives to limit Federal 
Medicaid spending. We urge the Office of Health and Human Services to 
work with the Department of Justice, ADAPT, and other advocates for 
community living to develop specific benchmarks for Olmstead 
compliance. Once developed, HHS could require States to report on these 
benchmarks and pursue enforcement with DOJ where needed.
    We have also noted that existing enforcement measures have largely 
focused on individuals with developmental disabilities, intellectual 
disabilities, and mental health disabilities and the issues of older 
Americans and Americans with physical disabilities who face 
institutionalization in nursing facilities have been largely 
unaddressed. This is due, in large part, to how funding for advocacy 
and enforcement have been established. Enforcement efforts have been 
driven by funding for the Protection and Advocacy system which has 
significant resources devoted to addressing the needs of people with 
developmental, intellectual and mental health disabilities. This leaves 
the rights of individuals with disabilities who are locked away in 
nursing facilities, or at risk of being forced into nursing facilities, 
largely unprotected.
    This emphasis in enforcement is reflected in the spending patterns 
of States that have begun to re-balance their systems for serving 
people with developmental and intellectual disabilities while re-
balancing of nursing facility spending with the home and community-
based alternatives has significantly lagged. There needs to be a 
stronger emphasis on Olmstead enforcement in this area.
    Because traditional enforcement systems have not adequately 
addressed this issue, Centers for Independent Living have taken on the 
charge. Unfortunately, we are seeing a recurring trend that the Centers 
which have worked to enforce the Olmstead decision face significant 
retaliation.
    For example, in Rochester, NY, the local Center for Independent 
Living--the Center for Disability Rights (CDR)--had assisted 
individuals in filing Olmstead complaints because people in nursing 
facilities were unable to access home and community-based services. 
Basically, the local county was failing to assess these individuals for 
services in a timely manner, and people were waiting months in nursing 
facilities to even be initially assessed for services in the community. 
Approximately 88 Olmstead complaints were filed. In response to this 
effort, in July 2010, Monroe County abruptly ended its contract with 
CDR to serve as a fiscal intermediary of Consumer Directed Personal 
Assistance Services and publicly attacked the organization in the 
media.
    More recently, in Kansas, Centers for Independent Living assisted 
individuals in filing literally hundreds of Olmstead complaints because 
of the growing waiting list for home and community-based services. 
Since filing these complaints, the centers have seen the reimbursement 
rates for Consumer Directed Services slashed and found their 
credibility under public attack by the State. This has been a statewide 
response by the State and has affected many independent living centers. 
Although the disability rights community is becoming increasingly aware 
of the threat of retaliation against centers that are working to 
enforce Olmstead, there has been little notice of this issue by the 
U.S. Department of Justice which leaves the retaliation to continue 
unchecked.
    To address these concerns, it is imperative that the Protection and 
Advocacy network begin to systematically use Protection and Advocacy 
for Individual Rights funding to address Olmstead compliance for older 
Americans and those with physical disabilities in nursing facilities or 
at risk of placement in nursing facilities. We also urge the Department 
of Justice to focus on Olmstead enforcement for people with physical 
disabilities and elderly people who are trapped in or at risk of being 
forced into nursing facilities. The Department of Justice, perhaps 
working in conjunction with the Protection and Advocacy system, can 
make significant progress by focusing on a few high profile nursing 
facility cases in order to set precedent and send a clear message that 
people with physical disabilities and the elderly are also covered by 
Olmstead. Additionally, DOJ must begin to address the retaliation that 
has occurred against Centers for Independent Living that have advocated 
for Olmstead compliance.
    Another lesson learned from the Kansas experience is that there is 
extremely limited enforcement available through Health and Human 
Services (HHS) and that pursuing enforcement through the HHS Office for 
Civil Rights actually delays justice for individuals who are 
institutionalized against their will or face unwanted 
institutionalization. In Kansas, advocates filed literally hundreds of 
Olmstead complaints with the HHS Office for Civil Rights. Although HHS/
OCR tried to address these complaints with the State, the State of 
Kansas refused to resolve the compliance issues. Although HHS could 
have withheld Medicaid funding from the State as an enforcement 
mechanism, it instead referred the case to the Department of Justice. 
Advocates didn't realize that DOJ could not simply pick up the case 
where HHS/OCR left off. DOJ is unable to use the investigative work 
that had previously been done by HHS/OCR. Instead, DOJ is required to 
do its own investigation. Consequently, the Kansas advocates are now 
being required to submit even more complaints directly to DOJ and must 
start the entire process again. This is an incredible waste of time 
that is delaying justice for Kansans with disabilities who need home 
and community-based services to live independently.
    Although HHS has said that it is unwilling to withhold Medicaid 
funding from the States as a method to force Olmstead compliance, it 
has in fact done so with Medicaid funding for family planning. When 
Texas refused to contract with Planned Parenthood, CMS withheld its 
Medicaid funding for family planning services. Given this precedent, 
HHS should withhold Medicaid funding for institutional placement if a 
State is unwilling to provide adequate home and community-based 
services in compliance with the Olmstead decision. CMS has demonstrated 
that it has the authority to do this. The agency should use this 
authority to leverage the changes needed to assure Olmstead compliance.
    In light of the 13th anniversary of the Olmstead decision, which 
determined, in accordance with the Americans with Disabilities Act's 
integration mandate, that long-term services and supports must be 
provided ``in the most integrated setting appropriate to the needs of 
qualified individuals with disabilities,'' it is imperative to take 
stock of how far we have come and where we need to go.
    Since the inception of Medicaid in 1965, there has been an 
institutional bias: nursing facility services are mandatorily covered 
while community-based alternatives to institutionalization remain 
optional. Despite over 20 years of advocacy, this bias remains today. 
Perhaps the most significant movement forward toward ending the 
institutional bias in Medicaid, is the creation of the Community First 
Choice (CFC) Option, which passed as part of the Affordable Care Act. 
We commend Senator Harkin and Senator Schumer for championing this 
Option and securing its place in the historic healthcare legislation.
    The Community First Choice Option is a community-based Medicaid 
State plan service which includes hands on assistance, safety 
monitoring, and cueing for assistance with activities of daily living, 
instrumental activities of daily living, and health-related functions 
based on functional need, not diagnosis or age. Although not a national 
mandate, States were given the option to select CFC with the incentive 
of enhanced Federal assistance. This financial incentive has been the 
impetus for several States (including California, New York, Maryland, 
and Alaska, to name a few) to move forward with CFC implementation. If 
done correctly, CFC will have a significant impact on States' systems 
for providing Medicaid long-term services systems and could potentially 
allow millions of Americans with disabilities to avoid unwanted 
institutionalization or transition out of institutions into the 
community.
    Because it was enacted as an option under the Medicaid State Plan, 
States must select the option in order to eliminate the institutional 
bias so there are still significant barriers to full community 
integration and the promise of the Olmstead decision. Perhaps the most 
significant barrier is the fiscal crises at the State level and the 
efforts to curtail Federal spending on entitlement programs like 
Medicaid. As States face unprecedented budget deficits, many are 
cutting Medicaid home and community-based services. Disability rights 
advocates continue to propose thoughtful budget solutions that contain 
Medicaid spending and increase community integration and independence. 
As an example, advocates in New York offered budget proposals that 
would advance the Olmstead compliance and reduce New York's Medicaid 
budget by $1B over 5 years. Yet these proposals are not the solutions 
States implement. Rather, States all across the country are making 
drastic cuts to home and community-based services and supports, the 
very programs that support people with disabilities living 
independently in the community. At greatest risk are people with the 
most significant disabilities who are rightfully fearful that they will 
end up institutionalized when their services are cut.
    Where States are not directly cutting services, they are 
implementing managed care to reduce Medicaid spending. While the 
potential exists for managed care to more efficiently use existing 
funds through the coordination of services and supports, advocates 
worry that this is actually a thinly veiled approach to cutting 
services. Even though States can use managed care to eliminate the 
institutional bias, some States may be actually reinforcing that bias 
because they control access to home and community-based services 
through managed care but leave institutional placements in the 
traditional fee-for-service system. With inadequate or poorly 
structured rates, this approach could lead to people with significant 
disabilities being forced into institutional placements against their 
will. HHS is in a position to evaluate the State proposals and assure 
that States do not force individuals into unwanted 
institutionalization. Although CMS has the authority to do this, it has 
not exercised that authority sufficiently and States continue to 
implement proposals that promote institutionalization with the approval 
of CMS. It is imperative that CMS acknowledge that States must comply 
with Olmstead as part of their approval process and CMS refuse to 
authorize proposals that undercut the right of Americans with 
disabilities to live and receive services and supports in the most 
integrated setting.
    Finally, although CFC creates a system for providing long-term 
services and supports based on functional need, it is only part of the 
solution. Despite all of the efforts to make home and community-based 
services available to individuals with disabilities, institutional 
placement is still mandatory and home and community-based services are 
only optional. Despite the Supreme Court's findings that 
``[i]nstitutional placement . . . perpetuates unwarranted assumptions 
that [people with disabilities] are incapable or unworthy of 
participating in community life'' and ``institutional confinement 
severely diminishes individuals' everyday life activities'' our 
Nation's Medicaid policy still forces Americans with disabilities into 
institutions. For the promise of Supreme Court's Olmstead decision to 
be real, it is up to Congress and the Administration to end the 
institutional bias and FREE OUR PEOPLE!
                                 ______
                                 
                               Attachment
    Issues to consider when developing benchmarks for Olmstead 
compliance related to people with disabilities who are 
institutionalized in nursing facilities or are at imminent risk of 
institutionalization in nursing facilities.
    1. Number of people transitioned out of NH and into HCBS A/D 
waivers. Has it increased, decreased, remained the same per year?
    2. Number of people diverted from entering NH and instead received 
HCBS 
A/D services. Has it increased, decreased, remained the same per year?
    3. Length of time people wait to transition out of NH. Increased? 
Decreased? Remain the same?
    4. Number of people State requested approval to serve in HCBS A/D 
waivers? \1\ Have the numbers increased decreased, remained the same 
per year?
---------------------------------------------------------------------------
    \1\ This will require a review of States' waiver applications. If a 
State has not requested increases in approved waiver ``slots,'' 
regardless of whether the State either receives funds for these slots 
or even fills the slots, there will not be increases in people served 
in the A/D waivers.
---------------------------------------------------------------------------
    5. Length of time people wait to receive HCBS to prevent 
institutionalization NH.
    Increased? Decreased? Remain the same?
    6. Numbers of people actually served in HCBS A/D waivers? Have the 
numbers increased, decreased, remained the same per year?
    7. Change in per capita expenditures for NH Institutionalization 
vs. Integrated Community-Based Services for A/D by year? \2\ How do the 
increases or decreases compare between NH and HCBS?
---------------------------------------------------------------------------
    \2\ DOJ could use data from fiscal year 2000 as a base and compare 
to most recent data, fiscal year 2008. Data for these benchmarks is 
available from Medstat, Kaiser and MDS, and CMS Nursing Home Data 
Compendium.
---------------------------------------------------------------------------
    8. Change in percent of LTC for Institution vs. Integrated in 
Community? Is there any indication of ``re-balancing?'' \3\ How do the 
increases or decreases compare between NH and HCBS?
---------------------------------------------------------------------------
    \3\ CMS at the time of the MFP wrote that a ``measurable 
benchmark'' in re-balancing was ``a percentage increase in home and 
community-based services versus institutional long-term care 
expenditures under Medicaid for each year of the demonstration 
program.''
---------------------------------------------------------------------------
    9. Change between dollar increases in MA per diem NH payments vs. 
community MA per diem expenditures? Have the per diem increased, 
decreased, remained the same per year? How do the increases or 
decreases compare between NH and HCBS?
    10. Does Medicaid agency use MDS data or other mechanism to 
transition people out of nursing homes who have expressed a desire for 
integrated placement? Does Medicaid agency identify people in NH who 
want to leave?
    11. Does the Medicaid agency have a process for tracking people who 
are unable to gain access to HCBS services (e.g., waiting list 
management and protocols for both people in NH and in the community)?
    12. Does the Medicaid agency have a process to update and maintain 
its waiting list on a timely and periodic basis?
    13. Does Medicaid agency have a formal procedure to offer HCBS 
before people go into NH?
    14. How many or percent of people who were admitted to NH with no 
HCBS services offered before institutional admission? \4\
---------------------------------------------------------------------------
    \4\ MDS (Table AB2) provides data by Medicaid agency re-admissions 
to NH.
---------------------------------------------------------------------------
    15. How many or percent of people who were admitted to NH had been 
offered some HCBS before admission? \5\
---------------------------------------------------------------------------
    \5\ Ditto. This data is important to determine if 
institutionalization would have occurred if more services had been 
offered? Whether the number of admissions could be reduced depends in 
part on the amount of home health services actually received and needed 
to stay at home.
---------------------------------------------------------------------------
    16. Has the Medicaid agency developed and implemented a single 
entry point or one-stop system of access for all [institutional and 
community-based] MA LTC?
    17. Has the Medicaid agency revised and consolidated its MA LTC 
under the direction of one agency with regards to budgetary, 
programmatic and oversight responsibility for institutional and HCBS 
services? If not, does the Medicaid agency have any barriers to 
transfer MA funds from NH line budget to community line budget? If yes, 
has Medicaid agency ever done so?
    18. Does Medicaid agency have a mechanism to prevent acute care 
hospitals from discharging people directly into NH? \6\
---------------------------------------------------------------------------
    \6\ Ditto.
---------------------------------------------------------------------------
    19. Does the Medicaid agency--as distinguished from the NH--have 
and use an uniform assessment policy/procedure/form at admission to 
divert people from institutionalization? Does the Medicaid agency--as 
distinguished from the NH--have and use an uniform assessment policy/
procedure/form at regular intervals during NH residence to determine 
what services the person may need or request to be integrated in the 
community?
    20. Does the Medicaid agency have a formal procedure to inform MA 
residents in NH and before admission to NH of both availability of 
integrated services and to assess specifically what services person 
might need?
    21. Has the Medicaid agency reduced MA expenditure payments? If 
yes, has Medicaid agency reduced HCBS while leaving NH program 
expenditures at status quo, increased, or proportionately reduced?
    22. Does the Medicaid agency use lack of care for medical tasks as 
a basis to deny HCBS?
    23. Has the Medicaid agency revised its nurse and/or physician 
delegation/assignment statutes to allow medical and health maintenance 
tasks (e.g., bowel and bladder care, medication management, trach/vent 
care) to be performed by qualified unlicensed persons?
    24. Does the Medicaid agency use ``lack of housing'' as a basis to 
deny HCBS?
    25. Has the Medicaid agency developed and implemented relationships 
with State/local housing departments in order to coordinate LTC and 
services in affordable and accessible housing? Does the Medicaid agency 
use ``lack of housing'' as a basis to deny HCBS?
    26. Has the Medicaid agency developed and implemented policies and 
programs that support informal caregivers and consumer directed care.
    27. Does the Medicaid agency use a ``too risky'' criteria as a 
reason to deny community services?
    28. Does the Medicaid agency require ``informal care'' as a reason 
to deny community services?
    29. Does the Medicaid agency use an aggregate or individual cost 
basis in it's 
A/D waivers? If the latter, does the Medicaid agency provide for 
reasonable modification in waiver services to meet the needs of people 
with the most severe disabilities?
    30. Is there a process/staff/contract to identify and assist people 
who are in NH and choose to transition to a community setting.
    31. Is there a shortage of community workforce personnel due to low 
wages/benefits that restricts the States ability to serve people in the 
community?
    32. Is there a rate setting policy that is consistent both for HCBS 
and NH programs, i.e., higher inflation factor for one vs the other?
    33. Do nursing home waiver package of services and/or cost cap meet 
the needs of people with significant needs who choose to remain in the 
community?
                                 ______
                                 
   Judge David L. Bazelon Center for Mental Health 
                                               Law,
                                 Washington, DC 20005-5002,
                                                      July 6, 2012.
U.S. Senate,
Committee on Health, Education, Labor, and Pensions,
428 Senate Dirksen Office Building,
Washington, DC 20510.

Re:  Olmstead Enforcement Update: Using the ADA to Promote Community 
Integration

    Dear Chairman Harkin, Ranking Member Enzi and Members of the Senate 
Committee on Health, Education, Labor, and Pensions: The Judge David L. 
Bazelon Center for Mental Health Law submits this testimony for the 
record of the June 21, 2012 hearing on Olmstead enforcement efforts. 
The Bazelon Center is a national non-profit organization dedicated to 
advancing the rights of all individuals with mental illnesses or 
intellectual disabilities to exercise their own life choices and have 
access to the resources that enable them to participate fully in their 
communities.
    At the June 21 hearing, Assistant Attorney General for Civil Rights 
Thomas Perez testified that the Department of Justice has prioritized 
Olmstead enforcement over the last 3 years, becoming involved in more 
than 40 Olmstead matters in 25 States. The Bazelon Center applauds the 
Department's dedicated effort to achieve increased home- and community-
based care for individuals with mental disabilities. This represents an 
important commitment to end the unnecessary segregation of individuals 
with disabilities in our country.
    Community living improves the lives of people with mental 
disabilities. It leads to independence; strengthens self-care and 
social and vocational skills; and correspondingly decreases challenging 
behaviors. Improved service and treatment approaches allow providers 
across the country to serve successfully individuals with serious 
mental illnesses and profound intellectual disabilities--including 
those with the most complex medical needs and challenging behaviors--in 
integrated, home-and community-based settings. As detailed in the 
amicus brief submitted by the National Association of State Directors 
of Developmental Disabilities, the American Association of Intellectual 
and Developmental Disabilities, the Association of University Centers 
on Disabilities, and others in support of the Settlement Agreement in 
United States v. Virginia,\1\ States have significantly expanded 
community services, successfully phased out institutions, and safely 
transitioned residents of large institutions to the community.
---------------------------------------------------------------------------
    \1\ See United States v. Commonwealth of Virginia, 3:12-cv-00059, 
Docket No. 52 (April 5, 2012).
---------------------------------------------------------------------------
    Ricardo Thornton, the formerly institutionalized self-advocate who 
testified before this committee at the June 21 hearing, has made 
significant and lasting contributions to his community and his country. 
Individuals without Mr. Thornton's wisdom and skills can also enjoy a 
safe and fulfilling life in the community. With individually tailored 
services and person-centered planning, virtually anyone--including 
those who need round-the-clock care--can live successfully in the 
community. In fact, more than 1.2 million individuals who qualify for 
an institutional level of care currently receive services in home- and 
community-based settings through section 1915(c) waivers, including 
more than 500,000 individuals with intellectual disabilities.\2\ 
Unfortunately, however, the majority of Medicaid long-term care dollars 
is still spent on outdated and unnecessary institutional care, leaving 
hundreds of thousands of individuals on waiting lists to receive 
services in integrated, home- and community-based settings.\3\
---------------------------------------------------------------------------
    \2\ Kaiser Commission on Medicaid and the Uninsured, Medicaid Home 
and Community-Based Services: Data Update 35, Table 4, at http://
www.kff.org/Medicaid/upload/7720-05.pdf (December 2011).
    \3\ Id. at 10. Individuals with intellectual disabilities comprise 
63 percent of those on the waiting list for home- and community-based 
services.
---------------------------------------------------------------------------
    Advocates for institutional care have expressed concerns about the 
Department of Justice's collaboration with States to phaseout 
institutions in accordance with Olmstead. In written testimony 
submitted to this committee, VOR cites several examples of high-needs 
individuals whom it believes require ``24/7 care.'' These individuals 
may in fact need such care, but without question it can be provided in 
home-and community-based settings. Given our Nation's success in 
serving individuals with comparably high needs in community 
settings,\4\ there is every reason to believe that the nine individuals 
profiled by VOR could be served in a more integrated setting, and that 
these individuals might experience improvements in their health and 
behaviors outside of an institutional setting.
---------------------------------------------------------------------------
    \4\ See Br. for Nat'l Ass'n of State Dir. of Developmental 
Disabilities, et al., supra note 1.
---------------------------------------------------------------------------
    It is a tragic reality that individuals with disabilities often 
become victims of abuse and neglect. Advocates for institutional care 
frequently cite deplorable instances of abuse and neglect that occur in 
the community. But abuse and neglect of individuals with disabilities 
is rampant in institutional settings as well,\5\ and the appropriate 
response is greater oversight of providers and caregivers regardless of 
their location. As such, the Department of Justice has taken great care 
to insist on improved oversight, accountability and quality management 
in the States where it is working to transition individuals from 
institutions to integrated settings.
---------------------------------------------------------------------------
    \5\ See, e.g., Danny Hakim, State Faults Care for the Disabled, New 
York Times, Mar. 22, 2012, at A1, available at http://www.nytimes.com/
2012/03/22/nyregion/new-york-state-draft-report-finds-needless-risk-in-
care-for-the-disabled.html?pagewanted=all (``At the large institutions 
overseen by the Office for People With Developmental Disabilities, the 
report found 119.68 abuse claims for every 100 beds.''); Emily Ramshaw 
& Becca Aaronson, Despite Reforms, Abuse Continues at Texas 
Institutions for Disabled, The Texas Tribune, Oct. 23, 2011, available 
at http://www.texastribune.org/library/data/abuse-neglect-texas-
disabled-institutions/ (citing 2.21 allegations of abuse per resident 
in 2011 at Texas' 13 residential institutions for individuals with 
disabilities).
---------------------------------------------------------------------------
    Finally, in its written testimony, VOR calls for a hearing and 
reauthorization of the Developmental Disabilities Assistance and Bill 
of Rights Act (``DD Act''), presumably to attempt curtail by amendment 
the investigation, representation, research and advocacy activities of 
State Protection & Advocacy organizations (P&As), University Centers of 
Excellence in Developmental Disabilities Education, Research, and 
Service (UCEDDs), and the Councils on Developmental Disabilities 
(CCDs). These organizations responsibly and effectively discharge their 
statutory duties to accomplish the central purpose of the DD Act--to 
``assure that individuals with developmental disabilities and their 
families participate in the design of and have access to needed 
community services, individualized supports, and other forms of 
assistance that promote self-determination, independence, productivity, 
and integration and inclusion in all facets of community life . . . .'' 
42 U.S.C. Sec. 101(a)(17)(b).
    Life in an institution does not permit ``inclusion in all facets of 
community life,'' such as social, educational and work activities. In 
contrast to institutional settings, where residents typically have 
regimented lives and little opportunity to learn independent living 
skills, community settings afford individuals the chance to learn to do 
things for themselves and develop greater independence, as well as the 
opportunity to make choices about matters such as what they eat, when 
they get up, how they spend their day, and with whom they spend it.
    Given the DD Act's primary focus on community inclusion, it is well 
within the authority of the agencies it created to advocate strongly 
toward this goal. Indeed, the Act charges CCDs to ``engage in advocacy, 
capacity building, and systemic change activities that . . . contribute 
to a . . . comprehensive system that includes needed community 
services, individualized supports, and other forms of assistance that 
promote self-determination for individuals with developmental 
disabilities and their families.'' Id. at Sec. 101(b)(1) (emphasis 
added). State P&As are obligated to ``protect the legal and human 
rights of individuals with developmental disabilities'' by advocating 
for community inclusion. Id. at Sec. 101(b)(2). And the UCEDDs are 
required by law ``to strengthen and increase the capacity of States and 
community'' to achieve community integration. Id. at Sec. 101(b)(3).
    The Bazelon Center and its many partners throughout the country 
have seen first-hand that individuals with mental disabilities, 
including those with the most complex needs, can live successfully in 
the community. Care in the most integrated setting appropriate is the 
right of all people with disabilities. For these reasons, and because 
such care is cost-effective, allowing States to provide care to more 
people, we will continue to advocate for the transfer of State and 
Federal dollars from institutional care toward care in integrated 
settings, consistent with the Americans with Disabilities Act and the 
Developmental Disabilities Assistance and Bill of Rights Act.
    Thank you for the opportunity to provide testimony on these 
important issues, and for conducting the recent hearing on Olmstead 
enforcement.
            Sincerely,
                                           Jennifer Mathis,
                                            Julia M. Graff,
           The Judge David L. Bazelon Center For Mental Health Law.
                                 ______
                                 
                                               VOR,
                                                     June 28, 2012.

    Dear Chairman Harkin, Ranking Member Enzi and Members of the HELP 
Committee, VOR respectfully submits this written testimony in response 
to the recent committee hearing, ``Olmstead Enforcement Update: Using 
the ADA to Promote Community Integration'' (June 21, 2012).
    VOR is a national, nonprofit, advocacy organization representing 
individuals with intellectual and developmental disabilities (ID/DD) 
and their families. The vast majority of the people VOR represents are 
full-grown adults with the mental age of a newborn or 1-year old. They 
cannot care for themselves, many have never spoken, and they are the 
most medically fragile of our citizens.
    Consistent with Olmstead and a myriad of Federal laws, VOR strongly 
supports a continuum of quality care options to meet the wide range of 
needs, ranging from family home, own home and other community-based 
options to Medicaid-licensed facility-based homes (ICFs/MR).
    Individuals with ID/DD who rely on ICF/MR care do not have the 
capabilities of witness Ricardo Thornton, whose accomplishments since 
moving from Forest Haven Center more than 3 decades ago are impressive 
and heartwarming. His 34-year career working in the library, his happy 
marriage, his fatherhood, and his capable self-advocacy are all to be 
applauded. Years of aggressive deinstitutionalization have led to more 
appropriate, less-specialized services for former residents like Mr. 
Thornton. However, other affected individuals, as discussed below, have 
been met with preventable, predictable tragedy. The Supreme Court, in 
its Olmstead decision, expressly cautioned against interpreting its 
decision as a deinstitutionalization mandate, predicting such action 
would harm people:

          ``We emphasize that nothing in the ADA or its implementing 
        regulations condones termination of institutional settings for 
        persons unable to handle or benefit from community settings . . 
        . Nor is there any Federal requirement that community-based 
        treatment be imposed on patients who do not desire it.''--
        Olmstead v. L.C., 119 S. Ct. 2176, 2187 (1999). See also,

          ``As already observed [by the majority], the ADA is not 
        reasonably ready to impel States to phaseout institutions, 
        placing patients in need of close care at risk . . . `Each 
        disabled person is entitled to treatment in the most integrated 
        setting possible for that person--recognizing on a case-by-case 
        basis, that setting may be an institution''--[quoting VOR's 
        Amici Curiae brief].'' Id. at 2189.

    Despite the clarity of the Supreme Court's holding and its 
cautionary statement with regard to unjustified community placement, 
Federal and State officials continue to mischaracterize Olmstead, 
treating it as a mandate to close facilities without any regard for how 
individuals will be served. As indicated in his statement to the HELP 
committee, Thomas Perez, Assistant Attorney General, Civil Rights 
Division, Department of Justice, ``The Court's [Olmstead] ruling has 
often and properly been called the Brown v. Board of Education of the 
disability rights movement.'' One VOR Board Member responded:

          ``Appropriate services, supports and placements are 
        individualized and not necessarily `equal.' My children would 
        die if all that was available to them was what everyone else 
        has available. With regard to level of disability, my children 
        were not created equal. They need highly specialized 24/7 
        care.''

    Mr. Thornton does not need 24/7 direct care supports. Imposing such 
care on him would not be appropriate, cost-effective or even humane. 
Consider, however, Aaron Underwood. Providing Aaron care ``equal'' to 
the supports received by Mr. Thornton would be a death sentence.

          ``Aaron was born 8 weeks prematurely in December 1979. While 
        he survived the birth, the lifelong effects from subarachnoid 
        and pulmonary hemorrhages are devastating. A large portion of 
        his brain was destroyed with the subarachnoid hemorrhage. Aaron 
        is profoundly neurologically impaired to the point that mental 
        retardation is not even an appropriate descriptor. His 
        functional abilities are in the 2-3 month range. Seizures, 
        respiratory insufficiency, frequent pneumonias, cortical 
        blindness, spastic tetraplegia with ever-increasing spasticity 
        are just a few of the daily challenges for his caregivers. 
        Aaron has no purposeful movement and does not reach for nor 
        grasp objects. He will remain in the position he is placed 
        until someone repositions him. He has no bowel or bladder 
        control--undergarments will be required for the rest of his 
        life. An incomplete swallow coupled with frequent aspirations 
        necessitates a feeding tube for all nutrition and medications. 
        He can, and has, choked on his own mucus, cutting off his 
        airway. Aaron is non-mobile and when not in bed is positioned 
        in a custom made wheelchair which accommodates the curvature of 
        his body. Aaron is also non-verbal and cannot communicate his 
        needs. Needs must be anticipated and proactively met.''--
        (``Meet Aaron Underwood,'' 2011 by parents Kevin and Rebecca 
        Underwood)

    People with disabilities have wide-ranging, diverse, unequal needs. 
Equal rights does not mean that individualized, person-centered, 
supports are to be ignored. ``Equal rights'' must relate to access to 
individually appropriate and necessary supports, no matter the setting.
   i. predictable tragedies: the present day deinstitutionalization 
                               experiment
    Advocates and policymakers are familiar with the failed 
deinstitutionalization experiment of persons with mental illness. 
Homelessness and incarceration, even today, are evidence of our ongoing 
failure to provide specialized treatment for persons with mental 
illness. Despite these lessons learned with regard to the mental health 
community, people with ID/DD continue to suffer from the same failed 
experiment.
    As recently as November 2011, the New York Times reported that 
``One in six of all deaths in State and privately run homes, or more 
than 1,200 in the past decade, have been attributed to either unnatural 
or unknown causes''--(November 6, 2011). The Atlanta Journal-
Constitution found,

          ``Deficiencies in care, living conditions and recordkeeping 
        have piled up in scores of Georgia personal care homes [35,000 
        violations], with the State rarely shutting down violators or 
        levying heavy fines [in just 544 cases]''--(May 22, 2012).

    A Miami Herald investigation found a string of ``deaths [that] 
highlight critical breakdowns in a State enforcement system that has 
left thousands of people to fend for themselves in dangerous and 
decrepit conditions''--(May 1, 2011).
    These tragedies, which are repeated in more than 25 States,\1\ 
amount to reckless disregard for people with profound ID/DD who have 
met with tragedy while Federal and State officials figure out what went 
wrong. Consider these statements during the hearing by Thomas Perez and 
Zelia Baugh:
---------------------------------------------------------------------------
    \1\ See, Widespread Abuse, Neglect and Death in Small Settings 
Serving People with Intellectual Disabilities, Rev. June 27, 2012 at 
http://www.vor.net/images/AbuseandNeglect.pdf.

          ``It is so important to learn from the past. The 
        deinstitutionalization movement of the 70's--the profound 
        mistake that was made was opening the doors of institutions 
        when community infrastructure didn't exist.''--Thomas Perez, 
        Assistant Attorney General, Civil Rights Division, Department 
        of Justice, June 21, 2012)
          ``If you look at our [settlement] agreements . . . we are 
        building community infrastructure'' so when someone is in 
        crisis there are options other than jail or an emergency 
        room.--(Perez, June 21, 2012)
          ``ADMH [the Alabama Department of Mental Health] has 
        experienced three main challenges in its efforts to shift 
        services to community settings: securing stakeholder buy-in, 
        identifying and developing resources within provider 
        organizations to serve persons with significant behavioral 
        challenges or multiple medical needs, and negative stigma. 
        While ADMH has developed strategies to overcome these 
        challenges, long-term efforts will be needed to ensure 
        continued success.''--(Zelia Baugh, Commissioner, Alabama 
        Department of Mental Health, June 21, 2012)

    A careful reading of these statements signals a profound lapse 
between the reality of ``community integration'' and the promise of 
community living. Time and again, deinstitutionalization is 
aggressively pursued before a ``robust community infrastructure,'' as 
described by Tom Perez, is in place. In the context of the mentally 
ill, Mr. Perez spoke about the support of some sheriffs' groups for 
more community placements for people with mental illness to keep them 
from inappropriate placements in the jails--50 years after some pushed 
to close all the institutions for people with mental illness. We must 
not repeat the same mistake for people with ID/DD.
    Mr. Perez says the Justice Department includes strong quality 
assurance provisions to prevent repeating this tragic mistake. For 
example, Justice Department officials have indicated that the proposed 
settlement agreement in Virginia includes a quality assurance provision 
modeled on best practices to include crisis centers and more. When 
pressed by VOR representatives, however, Justice Department officials 
acknowledged that this model community system is not in place in 
Virginia or anywhere, but is representative of a compilation of best 
practices from around the country. VOR and the members we represent do 
not dispute that is a well-intended plan, but it is only a plan and it 
is not in place for people to evaluate the results. Given the tragedies 
that have befallen fragile individuals with ID/DD who lack access to 
highly specialized care in communities around the country, there is 
little trust that a ``robust community infrastructure'' will actually 
materialize.
    Consider, for example, Alabama. Partlow ICF/MR closed nearly 2 
years ago, yet ADMH is still working on addressing care, safety,\2\ and 
funding challenges. By Commissioner Baugh's own admission, short-term 
funding is not assured (requests are pending), and financial 
sustainability beyond 2-3 years is of great concern:
---------------------------------------------------------------------------
    \2\ Commissioner Baugh also cites the State's quality assurance 
agreement with Alabama Disabilities Advocacy Program (ADAP) as evidence 
that former Partlow residents are being watched over. Yet, ADAP, which 
strongly supported closure even while identifying lapses in community 
care before Partlow closed, received a lucrative ($42,000) contract to 
oversee quality after it closed.

          ``The challenge for Alabama is coming up with the match money 
        for Medicaid. [We have applied for Affordable Care Act grants 
        that would] assist us with a 90/10 match for the next 2-3 
        years, but after that looking for sustainability is where we 
        have great concern.''--(Zelia Baugh, Commissioner, Alabama 
---------------------------------------------------------------------------
        Department of Mental Health, June 21, 2012).

    The mother of a former Partlow resident, who disputes Commissioner 
Baugh's characterization of Partlow's closure as a ``success,'' has 
tried desperately to remain in contact with the families of displaced 
Partlow residents:

          ``I am in touch with several parents and the disturbing 
        patterns of abuse and the lack of money for personal needs is 
        so hard to handle. One family must now travel 1\1/2\ hours to 
        visit their daughter each day to be sure she is doing well. I 
        know of nine residents who have died and four who are in jail. 
        ADAP [Alabama Disabilities Advocacy Program] is supposed to be 
        monitoring former residents but when I spoke to ADAP they were 
        only aware of 2 deaths, including one individual who died in a 
        nursing home. All former 151 residents were very fragile upon 
        their move from Partlow. Although I have encouraged families to 
        contact ADAP if they have any problems, families don't trust 
        ADAP since they were instrumental in closing Partlow. It seems 
        no one remembers that Olmstead stated on page 17 that 
        residents, or their legal guardians, have the final say about 
        the resident being moved to a community setting. We were 
        totally ignored.''--(Mother to M.M, former Partlow resident, 
        June 25, 2012).

    Unrealistic predictions of cost savings continue to contribute to 
community failings. We agree with Mr. Perez that ``robust community 
infrastructures'' are needed to serve safely and well people with ID/DD 
who are also multiply disabled, medically fragile or who experience 
dangerous behavioral conditions.
    Significant funding, on par with facility-based care or more, must 
be in place before transitioning people from facility-based care. 
``Putting the cart ahead of the horse''--moving people before services 
are in place with false expectations of cost savings--has resulted in a 
poorly funded, ill-prepared community infrastructure leading to 
predictable tragedies and poor outcomes. As evidenced in statements by 
Mr. Perez and Chairman Harkin, jails continue to be ad hoc 
``treatment'' centers for people with cognitive disabilities in many 
States who have nowhere else to go. Justice Department settlement 
agreements require that ``robust community infrastructures'' be built 
(in the future) so that, according to Mr. Perez, jails and emergency 
rooms do not remain the crisis centers of last resort. Yet these same 
agreements mandate the displacement of a pre-determined number of ICF/
MR residents (quotas) per year, without any regard for individual 
choice or need, as required by Olmstead (see e.g., Virginia and Georgia 
settlement agreements).
    VOR appreciates the questions posed by Senator Al Franken, who 
asked whether people with disabilities who chose home and community-
based services should receive the same protections as people who 
receive facility-based care. The response by Rita Landgraf, Secretary, 
Delaware Department of Health and Social Services, was a ``Resounding 
yes!'' We agree completely.
  ii. looking ahead: olmstead enforcement must respect different needs
    Until Federal and State officials remove their ``rose-colored 
glasses,'' tragedies will continue. The people at the center of the 
deinstitutionalization experiment are profoundly fragile individuals. 
Their right to receive appropriate and necessary care, based on their 
individual needs, continues to be ignored, contrary to the letter and 
spirit of Olmstead.
    As discussed above, anything less than 24/7 highly specialized 
services would be a death sentence for some people with ID/DD. There 
are thousands of people with severe and profound intellectual 
disabilities who are also medically fragile and have multiple physical 
disabilities, or who experience significant behavioral challenges that 
render them dangerous to themselves or others. These individuals, like 
Aaron whose story was shared previously, are thriving in ICFs/MR, 
specialized facilities designed to meet their long-term, complex care 
needs 24/7. Here are a few of their stories \3\:
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    \3\ As you read the stories of these individuals, consider how very 
different their disabilities and support requirements are from self-
advocate Ricardo Thornton.

     David has multiple disabilities including a profound level 
of intellectual disability (ID), total bilateral deafness, cerebral 
palsy and epilepsy. His teeth lack the normal enamel protective layer. 
David is 47 and has a mental age of 18 months. He is non-verbal and 
does not use sign language. He has had a hip replacement and is being 
treated for osteoporosis. His seizures have been under control with 
medication for 5 years. He has a history of aspiration pneumonia and 
has a diagnosis of moderate oropharyngeal dysphagia. Each meal consists 
of specially prepared blended foods and thickened liquids. David is at 
a high-risk level for falls, diabetes, choking and dehydration. His 
bowel movements are monitored to avoid bowel impaction. David requires 
staff assistance with brushing his teeth, shaving, bathing, toileting, 
dressing, eating, transferring, and transporting himself. David uses a 
wheel chair. He can walk with staff assistance using a walker and a 
gait belt. He requires staff assistance to go from one location to 
another. He can't perform work activities in active day treatment 
without hand-over-hand guidance. David is aware of his surroundings. He 
is able to recognize people who are familiar to him and uses facial 
expressions (i.e., smiling) to greet others. He enjoys being in an area 
where other people are moderately active such as in his home living 
room, traveling in a car or van, or in a mall or store. He enjoys 
watching people. His only method of communication is through eye 
contact and smiles. He does not have other communication skills.--(May 
2012, by parents D.P.and N.P.).
     My son, Brian, was expelled from four private facilities 
(two in Minnesota, two in Wisconsin), which do not have to keep 
difficult clients. When they expelled Brian because of dangerous 
aggression, he was sent HOME where we had little children. Out of 
structure, he broke hundreds of windows (we repaired them every 
weekend) and injured everyone in the family except the baby who was 
locked away from him. State-operated ICFs/MR in Illinois and many other 
States serve people with profound intellectual disabilities, and people 
with brain injury and physical aggression like Brian, but some even 
more extreme behaviors like sexual aggression, fire-starting, self-
mutilation, etc. The most extreme cases need to have a stable 
environment and staff who are well-trained and well-paid. Brian who 
engaged in PICA while he was in and out of settings that could not 
handle him has had three surgeries to remove pens and pencils which 
perforated his stomach lining and infected his lungs. At Choate, a 
State-operated ICF/MR, that behavior was extinguished. Families who 
have been on the edge between life and death with their loved ones like 
we have or waiting for release of their severely disabled loved one who 
was inappropriately thrown into jail--we have those stories as well--do 
not want another tragedy in their loved ones' lives. What apartment 
building would be right for Brian and which McDonald's has an 
application with his name on it?--(May 8, 2012 Letter from mother R.B.)
     R.S. suffers from brain damage due to an oxygen deficiency 
at birth, epilepsy with uncontrolled mixed seizures, profound 
swallowing problems, brittle bones, optic atrophy with myopia, 
incontinence, stenosis of his neck and back, peripheral neuropathy and 
hyper-salivation. R.S. is non-verbal and completely non-ambulatory. He 
gets all nutrition, hydration and medication via a gastrostomy tube.--
(February 11, 2012 Letter from guardian A.S.)
     S.B.C. suffered from spinal meningitis when she was 7 
weeks old and was left mentally and behaviorally disabled with 
``explosive-type'' outbursts during which she kicks, screams, bites, 
and throws things requiring her to be separated from others for her 
safety and that of those around her.--(March 12, 2012 Letter from 
parents, D.C. and L.C.)
     K.M. was born with severe brain damage resulting in many 
medical issues including a seizure disorder. K.'s father describes his 
son's intellectual ability as being ``that of a new born baby.'' He is 
blind, a quadriplegic with little control of his limbs, and he receives 
nourishment through a feeding tube.--See, March 9, 2012 Letter from 
father, D.M.
     J.K. has Angelman Syndrome and has the intellectual 
development of a 6-month to 1-year-old. J.K. is not toilet trained; he 
is entirely non-verbal; he tends to place everything in his mouth and 
chew on items that become choking hazards; and, when excited and 
agitated, he is prone to grab and hold onto whoever is nearby. J.K. has 
an exceptionally high pain threshold as illustrated by his not showing 
even a whimper of pain after he broke his collarbone a few years ago. 
This condition poses a constant risk of accident or medical emergency. 
His mother described a recent situation in which J.K. ate 11 inches of 
his quilt, which has since been encased in parachute material, and 
another incident in which J.K. picked at a sore on his elbow to the 
point that he pulled tissue out of his arm requiring surgery.--
(February 11, 2012 Letter from his mother, J.A.)
     T.K., who has been a resident of SVTC since the 1970s, is 
classified as moderately retarded with autistic tendencies. Her sister, 
J., states that T.K. has regularly exhibited violent behavior for most 
of her adult life including hitting, pushing, biting and breaking 
things. On one occasion, T.K. tried to put a piece of glass in her 
sister's eye and, on another occasion, she turned her bed upside down 
and ripped a water fountain out of the ground.--(March 15, 2012 Letter 
from sister, J.K.)
     R.J. is totally disabled, bed/wheelchair bound, tube fed, 
spastic with rigid muscles, diapered and medicated for seizures.--
(March 17, 2012 Letter from guardian L.J.)

    The individuals' profound disabilities and related needs are 
remarkable, but not unique. Their stories are repeated by the vast 
majority of families across the country whose loved ones receive life-
sustaining supports in licensed Medicaid facility homes.
    Mr. Perez and Commissioner Baugh's testimony acknowledged family 
opposition, characterizing such opposition as a ``challenge'' to 
closing ICFs/MR. It's no wonder. The deinstitutionalization experiment 
has not served people with profound ID/DD very well, nor have Federal 
and State officials respected families as true partners in policymaking 
and service decisions. Over and over again we hear, ``We were totally 
ignored.'' Promises have simply not met with reality. Inasmuch as it is 
their loved ones' lives at stake, families are morally driven to 
challenge these life-threatening proposals.
    Still, closure attempts have proceeded in spite of family 
opposition. Fortunately, some Federal courts have noticed:

          ``Furthermore, the Petitioners have a significant, 
        protectable interest in receiving the appropriate care of their 
        choice and protecting their rights under the ADA. See Olmstead 
        v. L.C. ex rel. Zimring, 527 U.S. 581, 602 (1999) (`Nor is 
        there any Federal requirement that community-based treatment be 
        imposed on patients who do not desire it.').''--(U.S. v. 
        Virginia, May 9, 2012)(Order granting intervention to ICF/MR 
        residents, as represented by their families/legal guardians, 
        over objection of the Justice Department)

          ``Most lawsuits are brought by persons who believe their 
        rights have been violated. Not this one . . . All or nearly all 
        of those residents have parents or guardians who have the power 
        to assert the legal rights of their children or wards. Those 
        parents and guardians, so far as the record shows, oppose the 
        claims of the United States. Thus, the United States 
        [Department of Justice] is in the odd position of asserting 
        that certain persons' rights have been and are being violated 
        while those persons--through their parents and guardians--
        disagree.''--(U.S. v. Arkansas, June 8, 2011) (case dismissed).

          ``Thus, the argument made by Arc and the United States 
        regarding the risk of institutionalization fails to account for 
        a key principle in the Olmstead decision: personal choice. And 
        here, where more residents desire to remain in institutional 
        care than the new facility can provide for, there is little to 
        no risk of institutionalization for those whose needs do not 
        require it and who do not desire it.''--(The Arc of Virginia v. 
        Kaine, December 17, 2009) (plaintiffs were represented by 
        Virginia's Protection and Advocacy and supported by the Justice 
        Department as Amicus) (case dismissed).

    Yet, DOJ persists undeterred and with continued disregard for 
resident and family input and opposition. As noted in Mr. Perez's 
testimony:

          ``[W]hen I became Assistant Attorney General in 2009, I 
        identified enforcement of the Olmstead decision as one of the 
        Division's top priorities. In the last 3 years, the division 
        has been involved in more than 40 matters in 25 States.''

    Ann Knighton, VOR's president and the president of the East Central 
Georgia Regional Hospital (Gracewood ICF/MR), was not consulted as a 
stakeholder with regard to the Justice Department Settlement (October 
2010) which calls for the closure of all Georgia ICFs/MR. In response, 
she stated:

          ``The United States Department of Justice has undermined the 
        U.S. Supreme Court's Olmstead decision by being forceful and 
        aggressive with regard to community transitions and thereby 
        omitting the element of resident choice, whether that be a 
        community or ICF/MR setting. If everyone is forced to accept 
        community living, then no one has choice.''--(November 30, 
        2012)
iii. vor urges the help committee to hold hearings and reauthorize the 
  developmental disabilities assistance and bill of rights act which 
                  hasn't been reauthorized in 12 years
    The recent HELP hearing on ``Olmstead Enforcement Update: Using the 
ADA to Promote Community Integration'' is a perfect prelude to a long-
overdue hearing: The Reauthorization of the Developmental Disabilities 
Assistance and Bill of Rights Act (DD Act). It has been over a decade 
since the DD Act was last subjected to congressional scrutiny and 
reauthorized.
    We want to be clear up front. VOR supports reauthorization of the 
Developmental Disabilities Act. We believe the DD Act programs play an 
important role in encouraging community integration.
    However, we strongly believe that most federally funded DD Act 
programs, including State DD Councils, State Protection & Advocacy 
groups, and University Centers of Excellence for People with DD, are 
harming the very people they are supposed to protect by subscribing to 
the incorrect notion that the DD Act and the Americans with 
Disabilities Act (ADA), as interpreted by the Olmstead decision, 
mandate the transition of all people from ICFs/MR to alternative 
settings. P&A, which files class action lawsuits for the sole purpose 
of forcing ``community integration,'' are most guilty of operating as 
though Olmstead and the DD Act are mandates to close centers, without 
regard to resident need and family input. For example:

          In a survey of all the people living in a Pennsylvania State 
        operated ICF/MR and their family contacts were asked if they 
        wanted a community placement: 1,013 of the 1,223 family 
        contacts responded to the question and 97.24 percent of them 
        answered ``no.'' Of the 307 residents who were able to respond 
        to the question 88.27 percent also answered ``no.''--(Source: 
        Survey, completed September 2011, as required by the P&A-filed 
        Benjamin v. PA Department of Public Welfare Settlement 
        Agreement. No attempt was made to survey all ICF/MR residents 
        and their families before the settlement agreement).
          Coffelt v. Department of Developmental Services was filed 
        1994 irrespective of the fact that 98 percent of the 
        developmental center family/guardian survey respondents opposed 
        P&A representation of their family members. As a result, two 
        centers closed and 2,500 residents were transferred from 
        developmental centers to community settings, resulted in well-
        documented higher mortality rates. One peer-reviewed study 
        found risk of mortality to be 82 percent higher in community-
        based settings. Then, ``Coffelt II'' was filed in 2002. P&A 
        challenged intervention efforts by parent/guardian 
        representatives, arguing,

          ``As a matter of substantive law, parents and guardians of 
        institutionalized persons have different and potentially 
        conflicting interests on matters pertaining to their child's or 
        ward's constitutional or statutory rights to liberty and due 
        process.''

    The Court rejected P&A's challenge.

          A survey of family members and guardians of residents in six 
        New Jersey ICFs/MR asked recipients of the survey whether they 
        were happy with the current placement of their loved ones, or 
        would prefer community-based care instead. Sixty-one percent of 
        the families and guardians receiving the survey responded. 
        Ninety-six percent of respondents indicated support of 
        continued ICFs/MR placement. The survey, sponsored by family 
        advocates for residential choice, was an effort to respond to 
        serious flaws in earlier State surveys and studies that have 
        been used to justify downsizing and closure proposals, 
        including a New Jersey P&A lawsuit.
          The Ligas Federal class action lawsuit was brought in 2005 by 
        Equip for Equality (P&A), against Illinois ``on behalf of '' 
        6,000 severely disabled residents who live in the 240 privately 
        operated ICFs/MR with more than nine residents, as well as 
        those living at home with elderly parents awaiting placements. 
        In the first 4 years of the case, families, on behalf of their 
        loved ones, unsuccessfully tried to intervene. As feared, in 
        2009, after 4 years of litigation, the parties reached a 
        proposed settlement that would have required the State to 
        reduce private ``institutional'' beds for each community bed it 
        added. In response, more than 2,000 families throughout the 
        State for whom the settlement was supposed to help successfully 
        objected to the settlement.

    All three DD Act programs believe that families of ICFs/MR 
residents need to be ``educated'' about the community and are spending 
precious resources on propaganda to prove how successful some 
transitions are. Families whose children reside in ICF/MR homes do not 
need to be educated any more than families of those living in the 
community. They have simply made a choice that is deemed unacceptable 
to the policies of the DD Act programs, contrary to their authorizing 
statute and the ADA (Olmstead). Their original charge was not to do 
this type of work but with the long gap in Federal oversight, these 
programs have wandered off their established path of advocating for 
people with intellectual disabilities into the role of telling the 
families and guardians of people with profound intellectual 
disabilities what is best for their loved ones. The result is to impose 
new limitations on people with intellectual disabilities rather than to 
expand those options to the maximum extent possible.
           what the law really says: the dd act and olmstead
    Like Olmstead in 1999, the DD Act in its 1993 amendments upheld the 
rights of individuals with developmental disabilities and their 
families to be the primary decisionmakers:

          ``Individuals with developmental disabilities and their 
        families are the primary decisionmakers regarding the services 
        and supports such individuals and their families receive and 
        play decisionmaking roles in policies and programs that affect 
        the lives of such individuals and their families.'' DD Act, 42 
        U.S.C. 15001(c)(3)(1993) (Findings, Purposes and Policies) \4\; 
        see also, Olmstead v. L.C., 119 S. Ct. 2176 (1999) (``the 
        transfer from institutional care to a less restrictive setting 
        is not opposed by the affected individual'').
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    \4\ In 2000, the following language was added to the ``primary 
decisionmaking'' clause, further strengthening the right of individuals 
and their families to choose from among an array of residential 
options: ``. . ., including regarding choosing where the individuals 
live from available options, . . .''.

    The ``primary decisionmaking'' clause was first added to the Act in 
1993 due to an amendment by Congressman Henry Waxman. In 1999, the 
spirit of the clause was embodied in the Olmstead decision itself. Both 
the Act and Olmstead recognize that individuals and their families are 
in the best position to know what is best by way of services, supports 
and policies. Both the Act and Olmstead embrace individuality--
recognizing that people with disabilities have very diverse needs.
    Both also caution against forcing a community setting on someone 
who does not desire and could not handle a community setting. The 
legislative history of the DD Act, as contained in the 1994 Conference 
Report, is as clear as Olmstead on this point:

          ``First, the goals expressed in this Act to promote the 
        greatest possible integration and independence for some 
        individuals with developmental disabilities may not be read as 
        a Federal policy supporting the closure of residential 
        institutions.''
          * * * * * * *
          ``Third, Protection and Advocacy systems established under 
        Part C of the Act shall use the resources made available under 
        this Act in accordance with the purposes and statement of 
        policy set forth in the Act and are authorized to pursue 
        appropriate remedies to address the violation of rights under 
        the laws in all settings, including community and ICF/MR 
        institutions . . . ''.--[(H. Rep. 103-442 (March 21, 1994)].

    The parallels between Olmstead and the DD Act are unmistakable. 
Yet, many DD Act programs continue to work to counter individual and 
family choice by proactively seeking the elimination of the ICFs/MR 
option.
                             iv. conclusion
    Contrary to the decision itself, ``Olmstead enforcement'' 
initiatives impose community placement on individuals, with regard for 
choice and the fundamental differences between individuals with 
physical or mild intellectual disabilities and those with profound 
intellectual disabilities. The ideology which drives the 
deinstitutionalization experiment (in the name of Olmstead) and the 
resulting outcomes are not critically scrutinized by Congress or the 
Administration.
    The affected individuals and their families deserve a hearing; they 
deserve a voice. Including family stakeholders in future Senate 
``Olmstead Enforcement'' hearings and holding a hearing in conjunction 
with the DD Act would provide these individuals and their families, as 
well as other people with intellectual and developmental disabilities 
and their families, with an opportunity to be heard. Their perspective 
matters. Choice matters.
    Thank you for your consideration. For additional questions, please 
contact Tamie Hopp, VOR Director of Government Relations & Advocacy, at 
605-399-1624 or [email protected].
            Sincerely,
                                                Sam Golden,
                           Chair, VOR Government Affairs Committee.

                                             Peter Kinzler,
                                  Chair, VOR Legislative Committee.

    [Whereupon, at 11:09 a.m., the hearing was adjourned.]

                                   