[Senate Hearing 111-696]
[From the U.S. Government Publishing Office]
S. Hrg. 111-696
THE ADA AND OLMSTEAD ENFORCEMENT:
ENSURING COMMUNITY OPPORTUNITIES
FOR INDIVIDUALS WITH DISABILITIES
=======================================================================
HEARING
OF THE
COMMITTEE ON HEALTH, EDUCATION,
LABOR, AND PENSIONS
UNITED STATES SENATE
ONE HUNDRED ELEVENTH CONGRESS
SECOND SESSION
ON
EXAMINING THE AMERICANS WITH DISABILITIES ACT (ADA) AND OLMSTEAD
ENFORCEMENT, FOCUSING ON ENSURING COMMUNITY OPPORTUNITIES FOR
INDIVIDUALS WITH DISABILITIES
__________
JUNE 22, 2010
__________
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COMMITTEE ON HEALTH, EDUCATION, LABOR, AND PENSIONS
TOM HARKIN, Iowa, Chairman
CHRISTOPHER J. DODD, Connecticut MICHAEL B. ENZI, Wyoming
BARBARA A. MIKULSKI, Maryland JUDD GREGG, New Hampshire
JEFF BINGAMAN, New Mexico LAMAR ALEXANDER, Tennessee
PATTY MURRAY, Washington RICHARD BURR, North Carolina
JACK REED, Rhode Island JOHNNY ISAKSON, Georgia
BERNARD SANDERS (I), Vermont JOHN McCAIN, Arizona
SHERROD BROWN, Ohio ORRIN G. HATCH, Utah
ROBERT P. CASEY, JR., Pennsylvania LISA MURKOWSKI, Alaska
KAY R. HAGAN, North Carolina TOM COBURN, M.D., Oklahoma
JEFF MERKLEY, Oregon PAT ROBERTS, Kansas
AL FRANKEN, Minnesota
MICHAEL F. BENNET, Colorado
Daniel Smith, Staff Director
Frank Macchiarola, Republican Staff Director and Chief Counsel
(ii)
?
C O N T E N T S
__________
STATEMENTS
TUESDAY, JUNE 22, 2010
Page
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.............................................. 3
Perez, Thomas E., Assistant Attorney General, Civil Rights
Division, U.S. Department of Justice........................... 5
Prepared statement........................................... 8
Mann, Cindy, J.D., Director, Center for Medicaid, Chip and Survey
and Certification, Centers for Medicare and Medicaid Services,
U.S. Department of Health and Human Services................... 11
Prepared statement........................................... 13
Merkley, Hon. Jeff, a U.S. Senator from the State of Oregon...... 21
Franken, Hon. Al, a U.S. Senator from the State of Minnesota..... 23
Hagan, Hon. Kay R., a U.S. Senator from the State of North
Carolina....................................................... 24
Bernstein, Robert, Ph.D., Executive Director, Bazelon Center for
Mental Health Law.............................................. 28
Prepared statement........................................... 30
Knight, Jeffrey, Frederick, MD................................... 34
Prepared statement........................................... 35
Thaler, Nancy, Executive Director, National Association of State
Directors of Development Disabilities Services (NASDDDS)....... 37
Prepared statement........................................... 40
Buckland, Kelly, Executive Director, National Council on
Independent Living............................................. 46
Prepared statement........................................... 49
Casey, Hon. Robert P., Jr., a U.S. Senator from the State of
Pennsylvania................................................... 53
ADDITIONAL MATERIAL
Statements, articles, publications, letters, etc.:
Response to questions of Senator Enzi by Cindy Mann.......... 58
(iii)
THE ADA AND OLMSTEAD ENFORCEMENT: ENSURING COMMUNITY OPPORTUNITIES FOR
INDIVIDUALS WITH DISABILITIES
----------
TUESDAY, JUNE 22, 2010
U.S. Senate,
Committee on Health, Education, Labor, and Pensions,
Washington, DC.
The committee met, pursuant to notice, at 2:35 p.m., in
Room SD-430, Dirksen Senate Office Building, Tom Harkin,
chairman of the committee presiding.
Present: Senators Harkin, Casey, Hagan, Merkley, Franken,
and Enzi.
Opening Statement of Senator Harkin
The Chairman. The committee on Health, Education, Labor,
and Pensions will come to order.
Eleven years ago today, the U.S. Supreme Court decided
Olmstead v. L.C., a landmark case on the rights of individuals
with significant disabilities to receive their necessary
services and supports in the community rather than in a nursing
home or in another institution. The Olmstead decision was a
critical step forward for our Nation, articulating one of the
most fundamental rights for all Americans with disabilities--
having the choice to live independently.
The Olmstead case involved two women with disabilities who
lived in the Georgia State Institution for Individuals with
Mental Illness. Although treatment professionals eventually
concluded that each woman was capable of living in a community-
based program, both remained institutionalized. The women filed
suit, requesting that they be allowed to move into their own
homes in the community, and eventually the case wound its way
up to the U.S. Supreme Court.
In the Americans with Disabilities Act 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 addition, we authorized the Justice Department to issue
regulations implementing title II's discrimination
proscription. One such regulation was the so-called
``integration mandate,'' which requires a public entity to
administer programs in the most integrated setting appropriate
to the needs of individuals with disabilities. Simply stated,
this means a setting which enables individuals with
disabilities to interact with nondisabled persons to the
fullest extent possible.
To accomplish this, public entities are required to make
reasonable modifications in their policies, practices, and
procedures. In Olmstead, the court held that the unnecessary
institutionalization of individuals with disabilities
constitutes discrimination and that the two women must be
provided community-based options. In reaching this decision,
the court said:
``Recognizing that unjustified institutional
isolation of persons with disabilities is a form of
discrimination that reflects two evident judgments:
First, institutional 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.
``Second, confinement in an institution severely
diminishes the everyday life activities of individuals,
including family relations, social contacts, work
options, economic independence, educational
advancement, and cultural enrichment.''
The Olmstead decision challenges Federal, State, and local
governments to develop more community-based opportunities for
individuals with disabilities. I've worked hard in Congress
over those years to increase the availability of home and
community-based services, first through the Money Follows the
Person program, now the Community First Choice Option.
To date 30 States have been awarded grants under the Money
Follows the Person program in order to transition individuals
from institutions. In the new comprehensive health reform law,
this program is extended through 2016 and its eligibility is
expanded.
In addition, in the new health care bill, beginning in
October 2011 the Community First Choice Option kicks in, the
components of which are really the Community Choice Act. States
that select it will receive enhanced Federal matching funds.
Specifically, the Community First Choice Option will cover the
provision of personal care services to help with the activities
of daily living such as dressing, bathing, grooming, and eating
that allow people to be able to live independently.
On this score, I always tell the story about my nephew
Kelly, who became paraplegic while serving in the U.S. Navy.
Again, because he was in the military all of his disability
functions are paid for by the Veterans Administration. So the
VA pays for his attendant services. He lives by himself in his
own home, drives his own van. But his attendant services on a
daily basis allows him to get up in the morning, go to work,
operate a small business, pay taxes, and be a fully
contributing member of our society, plus having those contacts
and social contacts and interaction that so many of us just
take for granted in our daily lives.
Community-based services and supports allow people to lead
these independent lives and have these jobs, and participate in
the community. Many will become taxpayers. Many will
participate in civic life. But all will have a chance to make
their own choices and govern their own lives.
Today we have gathered a number of distinguished witnesses
from the Department of Justice and CMS, as well as disability
advocates who have been in the forefront of making Olmstead a
reality. I will introduce our first panel, but first I'll yield
to Senator Enzi for his opening statement.
Opening Statement of Senator Enzi
Senator Enzi. Thank you, Mr. Chairman, and I want to thank
you for your leadership on this important issue and all of the
issues that deal with Americans with Disabilities. You've been
a champion on that for decades and were one of the prime movers
on this one before.
I'd also like to thank the witnesses for taking time out of
their schedules to be with us. It's a pleasure to welcome all
of you to our hearing.
Today's hearing recognizes an important event that took
place 11 years ago today as, as the chairman mentioned, on June
22, 1999, the U.S. Supreme Court ruled in the Olmstead
decision, which requires that States must provide individuals
with disabilities with community-based long-term care services
and transfer people into such settings when a State treatment
professional has determined such an environment is appropriate,
the community placement is not opposed by the individual, and
the placement can be reasonably accommodated.
The Olmstead decision, as it is known, was a landmark that
has helped to reshape years of policy in which more costly
institutional care was the norm and not helpful. Today we will
be discussing this important decision and also where we are
today in our efforts to implement it.
Shortly after the court issued its ruling, President Bush
announced the New Freedom Initiative as part of a nationwide
effort to remove barriers to community living for people with
disabilities. On June 18, 2001, President Bush also issued
Executive Order 13217, ``Community-Based Alternatives for
Individuals with Disabilities.'' The order called upon the
Federal Government to assist States and localities so the U.S.
Supreme Court's decision could be implemented swiftly and
without delay.
Several agencies, including the Department of Justice and
the Department of Health and Human Services, were required to
work with the States to help them determine how well they were
complying with the Olmstead decision and develop work plans to
provide services to qualified individuals with disabilities in
the most integrated settings. The Departments of Justice and
Health and Human Services were also charged with enforcing
Title II of the Americans With Disabilities Act and
investigating and resolving complaints filed on behalf of
individuals who had alleged that they had been victims of
unjustified institutionalization.
In June 2009, President Obama announced the Year of
Community Living to mark the 10th anniversary of the Olmstead
decision. Shortly thereafter, the Department of Health and
Human Services announced the Community Living Initiative, which
includes implementing solutions that address barriers to
community living for individuals with disabilities and older
Americans.
I look forward to hearing from witnesses from the
Department of Justice and from the Department of Health and
Human Services, specifically the Centers for Medicare and
Medicaid Services, and learning more about what's working and
what needs to be improved as States across the Nation work to
ensure that the requirements of the Olmstead decision are met.
More important than any bureaucracy, the decision is about
helping people so they can live where they want to live. As
previous HELP hearings have highlighted, many Americans do not
have the resources necessary to pay out-of-pocket for long-term
care in an institution. According to the Congressional Budget
Office, fewer than 7 percent of seniors have annual incomes
equal to or greater than the annual cost of a nursing home
stay.
Even more important, most Americans do not want to live in
nursing homes and other institutions. When speaking with
seniors and those with long-term care needs in my home State of
Wyoming, one thing I often hear is that they would rather stay
in the community than live in a nursing home or other
institution.
Not only is the community the preferred living option among
Americans, it's also less costly. The Amerigroup Corporation
reports being able to provide services for three people living
in the community for the cost of one person living in a nursing
home. They also report that the Texas Health and Human Services
Commission has concluded that community-based services cut
health care and long-term care costs by 6.5 percent.
Less costly, community-based services and supports are
being actively pursued and funded through Aging and Disability
Resource Center programs which were authorized by the Older
Americans Act and the Centers for Medicare and Medicaid
Services' Money Follows the Person, MFP, demonstration program,
as well as by Medicaid Infrastructure Grants. Additionally,
Wyoming is using the Green House Project as a model for
community-based service delivery. The Green House Project has
taken the next step in de-institutionalizing skilled nursing
care by moving care into real neighborhoods and small towns
across rural America. This model reduces the reliance on costly
institutional care and provides community-based options and
services in the neighborhoods where beneficiaries and their
families live.
I hope this hearing will make it clear that we need to
think more creatively and figure out ways in which all
Americans can access community services and receive the support
they need to lead more rewarding and fulfilling lives in the
community.
Again, I want to thank the witnesses for their
participation and I want to congratulate and thank the chairman
for his continued active, constant interest in Americans with
Disabilities. I look forward to the testimony.
The Chairman. I thank you very much, Senator Enzi, for
those kind words, and thank you for all of your willingness to
work together on these issues. This truly has been a very
bipartisan issue. From the ADA on, we have done everything we
can to make this strictly bipartisan, the ADA Amendments Act
that we worked on together, that was signed in the Bush
administration, the previous administration, that we got
passed. So it always has been a very strong bipartisan effort
and I appreciate that.
Well, we have two panels today. Our first panel is, Mr.
Thomas Perez. Mr. Perez is the Assistant Attorney General for
the Civil Rights Division at the U.S. Department of Justice.
He's spent his entire career in public service, first as a
career attorney at the Civil Rights Division, then as Assistant
Attorney General for Civil Rights at the Justice Department,
and then later as Director of the Office for Civil Rights at
the U.S. Department of Health and Human Services.
I also note that he served as Special Counsel to the late
Senator Edward Kennedy, serving as Senator Kennedy's principal
adviser on civil rights, criminal justice, and constitutional
issues. Mr. Perez is certainly no stranger to this committee
here.
Mr. Perez received his master's degree from Brown
University and a master's of public policy from the J.F.
Kennedy School of Government, and a Juris Doctor from Harvard
Law School in 1987.
Joining Mr. Perez on our first panel is Cindy Mann. Ms.
Mann is Director of the Center for Medicaid and State
Operations, which is part of the Centers for Medicare and
Medicaid Services, CMS as we call it. She most recently served
as a research professor and Executive Director of the Center
for Children and Families at Georgetown University's Health
Policy Institute.
She has also had extensive State-level experience, having
worked on health care, welfare, and public finance issues in
Massachusetts, Rhode Island, and New York. Ms. Mann received
her law degree from New York University School of Law.
We welcome you here. Thank you for being here on our panel.
Again, as you know, your statements will be made a part of the
record in their entirety, and we welcome you to make whatever
comments you want to make. Try to keep it at 5, 6, or 7
minutes, and then we can engage in a discussion.
So Mr. Perez, first of all we'll start with you. Welcome
again back to the committee. It's always good to see you, and
thank you for all your good work you do on behalf of people
with disabilities.
STATEMENT OF THOMAS E. PEREZ, ASSISTANT ATTORNEY
GENERAL, CIVIL RIGHTS DIVISION, U.S. DEPARTMENT OF
JUSTICE
Mr. Perez. Thank you, Mr. Chairman. It's always a pleasure
to be here. Senator Enzi, Ranking Member, thank you for your
leadership on this issue. Indeed, disability rights has always
been a bipartisan issue in this Congress and in this country.
The Attorney General looks forward to celebrating the 20th
anniversary of the ADA with former Attorney General Thornburg
to mark the bipartisan history of the Department.
Eleven years ago when the decision came down, I was the
Director of the Office for Civil Rights at the Department of
Health and Human Services, and in that capacity I had the
privilege of serving as one of Secretary Shalala's point people
on Olmstead. We had hoped that the Olmstead decision would be
more or less the Brown versus Board of the disability rights
movement, catalyzing very quick and effective transformation
from the institutional bias to the community biases.
Undeniably, many States have made great strides in that effort,
but we have undeniably a long way to go.
This is about real people, including the people in this
audience behind me, including people I have had the privilege
of meeting across the country, including people like Paul Boyd,
someone whom I met recently in my outreach in Birmingham, AL.
In 1995, he was a college sophomore. He had an accident that
left him paralyzed below the collarbone. He eventually
graduated from college, but by then he had entered a nursing
home and, in his own words, it made it ``next to impossible''
for him to find work.
He wants to be just like your nephew. He wants to go to
graduate school. He wants to be a counselor. He wants to be a
productive taxpayer in this community. But he can't, because
he's stuck in a nursing home and he doesn't need to be there.
That is the story of Paul Boyd and, regrettably, there are
quite literally millions of Paul Boyd's throughout this country
who with the appropriate supports can, should, and ought to be
living in community-based settings. As long as there are people
like Paul, there is far too much work to be done.
As I've said in prior hearings, the Civil Rights Division
is again open for business, and we have made Olmstead
enforcement a top priority and we've had a landmark year. The
division has filed amicus briefs in cases in Connecticut,
Virginia, North Carolina, Illinois, Florida, New Jersey, and
California. We have filed lawsuits in Arkansas and Georgia and
we intervened in a case in New York.
These cases involve individuals with a wide range of
disabilities who can and want to live in the community. The
Olmstead decision applies to all people with disabilities, not
simply people with certain kinds of disabilities.
In addition to stepping up our enforcement, our approach to
institutional investigations has changed. We've built a new
paradigm. In the past we conducted much of this work by asking
one and only one question, which was whether the facilities
were safe and met constitutional minimums. That continues to be
a critically important question, but we must also ask another
question: Are there individuals in that institution who can and
want to live in the community with the appropriate supports?
So we are focused on the twofold analysis. We're conducting
the Olmstead analysis, and that is, if they can live in the
community, that we are equally rigorous and robust in ensuring
that the community-based services they receive are adequate,
appropriate, and carefully monitored.
My written statement provides more details about some of
the efforts I've just described, but I'd like to talk to you
about two of our recent actions. In January, the division filed
a motion for immediate relief in a case involving seven State-
run psychiatric hospitals in Georgia, including the facility
that was at the heart of the Olmstead case more than a decade
ago. The division found that hundreds of individuals who can
and should be served in the community remained
institutionalized and exposed to often dangerous conditions.
I personally traveled to the State of Georgia to meet with
the governor and to express to him our seriousness about this
matter and our desire to fix the problem, not to fix the blame.
In one of the most egregious examples in Georgia, a 14-year-old
girl with mental illness died after becoming lethally
constipated. She had been prescribed an assortment of
medications, many of which commonly caused constipation. On the
day before she died, she complained of stomach pain and had
nausea and vomiting. An autopsy found that her colon was
stretched almost to the point of bursting. An investigation
found that her impacted bowels had developed over time and
could have been detected with more rigorous medical care. We
are currently involved in settlement negotiations in Georgia
and I hope we will be able to resolve that case.
Last month in Florida, the Department filed a statement of
interest to support Michele Haddad's lawsuit against the State.
Ms. Haddad is a 49-year-old with a spinal cord injury who is
quadriplegic and uses a wheelchair. Her lawsuit alleges that
Florida fails to provide community-based services to Medicaid-
eligible individuals with spinal cord injuries who are at risk
of institutionalization.
Haddad has successfully resided in the community since
2007, but is at risk of entry into a nursing home due to
changes in her caregiver situation. She's been on the waiting
list for 2 years and she notified the State of her increased
need for services. This is what the State told her. The State
told her that she would be eligible for services only if she
entered a nursing home and stayed there for at least 60 days.
So go into the nursing home and then ask for a permission slip.
That's why we filed a brief and a complaint and a declaration
for a preliminary injunction, because she too wants to be just
like your nephew, Mr. Chairman, and live in the community.
These efforts reflect just one piece of an administration-
wide effort. Last year, as you know, President Obama proclaimed
the Year of Community Living, recognizing the need for
unprecedented collaboration to cultivate systemic, sustainable
reform. We are doing just that. We are transforming our
relationships with our key partners, our partners at HHS.
Cindy Mann is a rock star. I want to state that for the
record. And her work at CMS has been invaluable. The work of
the Office for Civil Rights in the Georgia case has been
invaluable. The work of the Substance Abuse and Mental Health
Service Administration providing technical assistance as we
draw a blueprint for reform in Georgia has been invaluable. The
work of the nonprofit partners who are involved in the Georgia
case and in so many other cases has been invaluable. Many of
those private attorneys general are sitting behind me today and
many others are toiling away in Minnesota, Oregon, Wyoming,
Iowa, and so many other places, making sure that the Olmstead
decision is given full force and effect.
There are indeed those who argue that now is not the time
to implement Olmstead aggressively due to the budget
constraints that State governments are confronting. I do agree
that now is not the time. We should have started years and
years ago. And we are indeed making progress, but we have a
long way to go, and the evidence has shown that you can
implement Olmstead in ways that are indeed both cost-effective,
legally sufficient, and humane.
I look forward to any questions you have and I'm very
excited about describing the work that we're doing on behalf of
vulnerable people across this country with disabilities. Thank
you very much, Mr. Chairman.
[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 on the anniversary of
the Olmstead v. L.C. decision, a ruling that has often been called the
Brown v. Board of Education of the disability rights movement.
Indeed, Olmstead was a landmark decision that recognized the civil
rights of individuals with disabilities as well as the benefits of
community living, and has changed the lives of so many who would
otherwise be hidden away behind institutional walls. 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.
Eleven years after the Supreme Court recognized that
institutionalization of individuals who are capable of living in and
would benefit from community settings is discrimination that deprives
those individuals of their freedom, many States have made great strides
in expanding treatment options.
But for all of the progress made, I continue to hear about people
like Paul Boyd, who I had the opportunity to meet earlier this year
while on a trip to Birmingham, AL. In 1995, while a sophomore at Troy
State University, Paul was injured in an accident that left him
paralyzed below the collar bone. Paul eventually returned to college in
his hometown of Montevallo, graduating in 2007 with a bachelor of fine
arts degree. In December 2006, Paul entered a nursing home, and in his
own words, it is ``next to impossible'' for him to find work that would
allow him to live independently. Earlier this year, Paul was accepted
to a graduate program at the University of Montevallo to seek his
master's degree in community counseling. However, his classes would be
at night, and he is not sure that he will be able to begin the program
because of lack of transportation from his facility, which is 13 miles
from the University. Paul told us that if he could get out of the
nursing facility and receive services in his community in Montevallo,
he could easily make it to his classes. In order to live independently,
he would need the assistance of healthcare workers to help him bathe
and dress and get into his wheelchair. He would also need assistance
with some basic household chores. Montevallo is Paul's hometown, and
while he has an extended support network of siblings and friends there,
that is not enough, and the community-based services he needs to live
independently simply are not available.
Sadly, Paul's story is not an exception. According to the Kaiser
Commission on Medicaid and the Uninsured, more than 393,000 people sat
on waiting lists for home and community-based services in 2008, the
most recent year for which figures are available. That number
represents an increase of more than 200,000 since 2002.
We should celebrate progress made since the Olmstead ruling, but as
long as people like Paul and the many others waiting for a chance to
live in the community are segregated in institutions, there is clearly
more work to be done. The real reason I am here on the anniversary of
Olmstead is to discuss the work that still lies ahead and the efforts
of the Justice Department and the Obama administration to address the
challenges that remain.
CIVIL RIGHTS DIVISION OLMSTEAD ENFORCEMENT
The Civil Rights Division's Disability Rights Section, which
enforces Title II and Title III of the ADA, and Special Litigation
Section, which enforces the Civil Rights of Institutionalized Persons
Act (CRIPA), have made Olmstead enforcement a top priority, and the
first year of the Obama administration proved to be a landmark year.
The Division has filed amicus briefs in cases in Connecticut, Virginia,
North Carolina, Illinois, Florida, New Jersey and California; filed
lawsuits in Arkansas and Georgia and intervened in a case in New York.
In addition to stepping up enforcement, our current approach to
cases of unnecessary institutionalization represents a paradigm shift.
In the past, we conducted much of our institutional investigatory work
under our CRIPA authority by first asking whether the institutions
under investigation were safe, and whether the conditions of
confinement were constitutional. This is a critical question, and one
that must be evaluated any time we investigate an institution. But it
should be the second question we ask. First, we must ask whether there
are individuals in those institutions who could appropriately receive
services in a more integrated setting.
In January, the Division filed a motion for immediate relief in a
case involving seven State-run psychiatric hospitals in Georgia,
including the facility that was at the heart of the Olmstead case more
than a decade ago. A year prior to our motion, the Division and the
State entered into an agreement to ensure that individuals in the
hospitals were served in the most appropriate integrated settings and
that unlawful conditions in the hospitals were remedied, but the court
had not yet approved the agreement. After monitoring conditions at the
hospital, the Division found that hundreds of individuals who could and
should be served in the community remained institutionalized. In
addition to this unlawful segregation, individuals in the hospitals are
exposed to often dangerous conditions.
In one of the most egregious examples, 14-year-old Sarah Crider, 3
months after being admitted to Georgia Regional Hospital in Atlanta for
mental illness, died after becoming ``lethally constipated'' while in
the hospital. Sarah had been prescribed an assortment of psychotropic
medications, many of which commonly caused constipation. One the day
before her death, Sarah complained of stomach pain and had nausea and
vomiting. An autopsy found that her colon was stretched almost to the
point of bursting, and that she died of sepsis, an infection in her
bloodstream. An investigation found that her impacted bowels had
developed over time and could have been detected by more careful
medical care.
In addition, our investigation found a number of other examples of
dangerous conditions, including:
In 2009, the State failed to adequately supervise an
individual who had killed previously. The individual assaulted and
killed another individual in the hospital.
In 2008, hospital staff failed to intervene in a fight
between individuals. One of the individuals was knocked unconscious and
died a few days later from blunt force trauma to the head.
In 2009, staff failed to adequately supervise an
individual who raped another individual.
In 2009, an individual committed suicide by tipping his
bed up and hanging himself from the upended bed. The Justice
Department's experts had repeatedly warned hospital staff during on-
site visits of the dangers posed by these beds that were not bolted to
the floor.
In January of this year, the State failed to adequately
supervise an individual who expressed suicidal thoughts the day before
she committed suicide.
The Division is currently in settlement negotiations with the State
of Georgia.
Last month, the Division filed suit against the State of Arkansas
for systematically violating the ADA by segregating residents in six
State-run institutions for individuals with developmental disabilities.
While confined in the Arkansas Human Development Centers (HDCs), the
1,100 residents of the facilities have extremely limited access to
community activities and amenities, as well as limited opportunities to
interact with people without disabilities. The lawsuit also alleges
that the State restricts development of adequate community supports and
services to enable individuals to leave the HDCs and to offer viable
alternatives to many individuals who are at risk of inappropriate
institutionalization.
As the Division's complaint notes, the current wait list in
Arkansas for home and community-based waiver services for individuals
with developmental disabilities who are seeking community alternatives
to institutionalization totals approximately 1,400 people. This wait
list moves at an extremely slow pace, with most people waiting several
years for community services. Individuals currently at the bottom of
the list will likely wait more than a decade to receive community
services. Yet, the State is actively expanding its HDC institutions at
the cost of developing community alternatives.
Also last month, in Florida, the department filed a statement of
interest to support Michele Haddad's lawsuit against the State for
violations of the ADA's integration mandate. Haddad, a 49-year-old
woman with a spinal cord injury resulting from a motorcycle accident,
has quadriplegia and uses a wheelchair. Her lawsuit alleges that
Florida fails to provide community-based services to Medicaid-eligible
individuals with spinal cord injuries who are at risk of
institutionalization. Instead, the State will fund those services only
after an individual relinquishes his or her ties to the community and
enters a nursing home. Haddad has successfully resided in the community
since 2007, but is at risk of entry into a nursing home due to changes
in her caregiver situation. Haddad, who has been on the waiting list
for services for 2 years, notified the State of her increased need for
services, but was told that community services would only be available
if she was willing to enter a nursing home for 60 days. The United
States' filing supports Haddad's complaint and declaration for a
preliminary injunction against Florida.
In New York, the Justice Department intervened in Disability
Advocates Inc. v. David A. Paterson, ET al., a case brought by a
protection and advocacy organization to challenge the State's placement
of persons with mental disabilities in Adult Homes. The Department
filed a brief in support of the advocates' proposed remedial plan to
require the State to create 6,000 new community-based placements, and
against the State's proposed plan to create approximately 1,000 new
placements.
It's important to note that enforcing Olmstead is not about placing
every individual in a community-based setting regardless of their
disability or their desire. The Olmstead decision makes clear that
States have an obligation to provide services to individuals with
disabilities in the most integrated setting appropriate to their needs.
YEAR OF COMMUNITY LIVING: ADMINISTRATION EFFORTS
As I said, this work is a priority for the Civil Rights Division,
and we are committed to aggressive enforcement of Olmstead so that we
can build upon progress made over the last 11 years. But our work is
only one piece of a larger, Administration-wide effort to make the
promise of Olmstead a reality for individuals with disabilities
nationwide. Real reform requires a holistic approach. As a lifelong
public servant, I recognize that the most vexing problems a government
faces are those that require unprecedented inter-agency collaboration
and coordination. The unnecessary and illegal institutionalization of
individuals with disabilities who would be better served, and better
able to contribute to their communities, if they were provided services
in integrated settings, is one of those problems.
This is why last year, on the 10th anniversary of Olmstead,
President Obama proclaimed the Year of Community Living. The Community
Living initiative is marked by unprecedented collaboration so that we
can be sure that as we enforce the ADA and the Olmstead decision, we
are cultivating systemic, sustainable reform.
In our work at the Department of Justice, this collaboration helps
us to craft consent decrees that lead to such systemic reform. By
working with the Department of Health and Human Services and the
Department of Housing and Urban Development, for example, we can ensure
that the remedies laid out in a consent decree to increase community-
based placements will have adequate financing, and that there will be
adequate community infrastructure.
For this reason, the HHS Office for Civil Rights has been at the
negotiating table with us as we work toward an agreement in Georgia. We
have relied heavily on the technical assistance that the Substance
Abuse and Mental Health Services Administration and the Centers for
Medicare and Medicaid Services can provide, because that assistance
will be critical in ensuring that any settlement reached leads to real,
sustainable reform.
Meanwhile, those agencies have been actively pursuing strategies
over the last year as part of the Year of Community Living. Last month,
Cindy Mann, Director of the Center for Medicaid, CHIP, and Survey and
Certification at CMS, sent a letter to State Medicaid Directors
outlining an array of programs, both existing and new, to assist States
in their efforts to provide more services in community settings. The
services outlined include various technical assistance options,
including a new program to assist States as they work to evaluate
individuals with mental or developmental disabilities to determine the
most integrated setting appropriate for their needs; a partnership
between HHS and HUD that includes funding availability for Housing
Choice Vouchers; and a variety of other resources and programs.
Meanwhile, HUD has provided tens of millions of dollars over the
last year to fund housing choice vouchers for non-elderly individuals
with disabilities, including funds specifically targeted to providing
assistance for individuals transitioning out of institutional settings.
Additionally, the Affordable Care Act that you enacted earlier this
year includes a number of provisions to provide more opportunities for
individuals with disabilities to receive services in community-based
settings. These include an extension of the Money Follows the Person
demonstration through 2016, improvements to the Medicaid HCBS State
plan option and other provisions to help States meet their Olmstead
obligations. HHS plans to provide further guidance on these and other
provisions from the Affordable Care Act.
LOOKING FORWARD
Next month, we will celebrate the 20th Anniversary of the Americans
with Disabilities Act, a landmark civil rights law that has improved
the lives of so many people with disabilities, and has changed
perceptions and stereotypes and lessened the stigma of disability.
But, as we celebrate the progress made in the last two decades, we
must think about what the next 20 years of ADA enforcement will look
like.
Institutionalization has long been the default choice for providing
services to people with disabilities. In the 11 years since Olmstead,
this has begun to change, but too many individuals in too many States
continue to live in institutions when they could be better served in
the community.
The Obama administration is committed to helping more people access
community-based services, and by working collaboratively as a Federal
Government and coordinating with State and local governments, we can
accomplish real, systemic, sustainable change in the way we approach
services and treatment.
For the Department of Justice, turning the promise of the Olmstead
decision into a reality for individuals with disabilities across the
Nation has become a major component of ADA enforcement. Our success in
that endeavor will be a determining factor in whether we will be able
to celebrate more great progress in the next two decades of ADA
enforcement.
The Chairman. Thank you very much, Mr. Perez.
Now we'll turn to Ms. Mann. Welcome, Ms. Mann. Please
proceed.
STATEMENT OF CINDY MANN, J.D., DIRECTOR, CENTER FOR MEDICAID,
CHIP AND SURVEY AND CERTIFICATION, CENTERS FOR MEDICARE AND
MEDICAID SERVICES, U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
Ms. Mann. Good afternoon, Chairman Harkin, Ranking Member
Enzi, and members of the committee. Thank you for the
invitation to discuss the Centers for Medicare and Medicaid
Services' role in encouraging and supporting community-based
services and supports for people in need of long-term care. I
want to begin by acknowledging the enormous and positive
changes that have taken place in this country, brought about by
the Americans with Disabilities Act and you in particular,
Senator Harkin, for all you've done, both to bring about that
act and to improve the way that Medicaid is able to serve
people with disabilities.
The Olmstead decision marked the beginning of a fundamental
change in how Medicaid serves people with disabilities. We have
made enormous progress since June 22, 1999. To give you a
little bit of the dimensions of the change that has occurred
since the Olmstead decision, consider the following. Annual
Medicaid expenditures for community-based services have
increased from a little over a quarter of total Medicaid long-
term care spending to almost 45 percent of those expenditures.
Today more than half of Medicaid's beneficiaries who are
receiving long-term care services are receiving that care in
community settings. While real and tangible progress has been
made, much more needs to be done. Far too many people are
waiting for the services they need in the community. There are
1.6 million Americans still receiving services in institutions,
many of whom would prefer to receive services at home. Perhaps
most worrisome is that, with State budget constraints, there's
a real danger that the progress that's been achieved over the
past 11 years will be slowed or even rolled back.
As the largest single source of funding for long-term care
services and supports, Medicaid plays a unique role in the
context of the Americans With Disabilities Act. Our mission in
this area is to work aggressively to address the inherent
statutorily based institutional bias within the Medicaid
program by expanding and improving the opportunities for people
to receive needed services in the community using all the tools
available to us.
Many people need and benefit from receiving their care in
an institutional setting. But no one should have to enter an
institution and relinquish their ability to participate in
community life to get the medical care they need if those
medical services could be provided in an appropriate manner in
the community.
Working with the disability and aging communities as well
as with States, CMS is currently building upon several existing
initiatives to strengthen the choices available to people as we
also begin to implement the new grants and State options
enacted as part of the Affordable Care Act. Together we believe
these provisions will do much to allow Medicaid beneficiaries
living with disabilities to have the opportunity to receive the
care they need in the community.
Our work at CMS is part of a broader initiative. Senator
Enzi noted the Year of Community Living that has been
established first by the President, followed by the Secretary
of HHS, Secretary Sebelius. That initiative was designed to
bring collaboration and it takes a lot of collaboration across
Federal agencies to try and identify and eliminate some of the
barriers that exist.
One of those key barriers, of course, is in the area of
housing. We have been working particularly aggressively with
HUD over the last year to identify ways to make vouchers and
housing assistance available to people so that they have a
better opportunity to receive care in the community. It's clear
that for real progress to be made more is needed than just
health care delivery and financing strategies, although those
are obviously important.
Focusing on particularly how CMS and the Medicaid program
can help States find solutions, on May 20, 2010 we issued a
letter to State Medicaid directors underscoring the importance
of continuing to work to make progress consistent with the
Olmstead decision. We outlined several of the options that are
available to States. Some of them are new options, some of them
have been established over the last 10 years. They include new
State plan options that allow States to serve people in the
community without going through waivers, aging and disability
resource center programs designed to streamline access to care,
and person-centered hospital discharge planning, which helps
bring in families and consumers to the planning process to find
appropriate community-based alternatives to institutional care.
This is one of the examples of ways in which we think that
improving quality for people can also reduce costs for
Medicaid, for State and Federal Government, certainly by
avoiding unnecessary institutional stays after hospital
discharge.
The May 20 letter also referenced the learnings from the
Money Follows the Person demonstration grants, which, as you
noted, Chairman Harkin, Congress just extended and expanded.
I'm pleased to announce today that we are issuing a new
guidance on the MFP provisions that are in the new law to
advise States of what those provisions are and to advise them
that we will be doing a grant solicitation for the new dollars
made available in the Affordable Care Act later this summer. We
expect to do so in July. We're very excited to work with the
States that already have MFP grants to expand their capacity,
as well as to work with new States.
We are very excited also about implementing several of the
new provisions in the Affordable Care Act. The Community First
Choice Option, effective, as you noted, on October 2011, allows
States to cover home and community-based attendant services and
supports, operating under a consumer's direction and through a
person-centered plan of care.
Significantly, you have provided an additional 6 percentage
point increase in State matches to make sure that States have
the ability to move forward. Thank you, chairman, for your
leadership in pushing forward the Community First Option.
We also have additional Federal match for the balancing
incentive program to encourage States that haven't made very
much progress to try and move forward as some other States have
done.
I'll close my remarks by noting another important
anniversary that is coming up. Of course, we all know that July
26 will mark the 20th anniversary of the ADA. Much progress has
been made over the past 20 years, but, as everybody, I think,
testifying before you today would agree, the work remains
unfinished.
I can assure you that CMS is working and listening to
people living with disabilities, working closely as well with
States and our colleagues at the Department of Justice--he's
also a rock star--and the other agencies, and taking a
leadership role in assisting States to meet their obligations
under ADA and the Olmstead decision.
We thank you for all that Congress and particularly the
leadership of this committee has done, especially in this area.
It is hard to imagine any work more important. Thank you.
[The prepared statement of Ms. Mann follows:]
Prepared Statement of Cindy Mann, J.D.
Chairman Harkin, Ranking Member Enzi, and members of the committee,
thank you for the invitation to discuss the Centers for Medicare and
Medicaid Services' (CMS) role in encouraging and supporting community-
based services and supports for individuals in need of long-term care.
The Medicaid program plays a critical role in assuring that these
services and supports are available and in promoting State efforts to
comply with the Americans with Disabilities Act (ADA) and the U.S.
Supreme Court's decision in Olmstead v. L.C. Working with the
disability and aging communities, as well as States, CMS is currently
building upon several current initiatives and looks forward to
expanding State options that will ensure that Medicaid beneficiaries
living with disabilities have the opportunity to receive the care they
need in the community.
I would like to begin by commending the work of Chairman Harkin and
this committee on the improvements in this area that are part of the
recently enacted Affordable Care Act (ACA). Your tireless commitment to
improving the lives of Americans with disabilities, as demonstrated by
your instrumental contributions to passage of the ADA, manifested
itself again in the inclusion of the Community First Choice Option
program and other notable improvements to the Medicaid program within
this important legislation.
Since the passage of the ADA and the Olmstead decision, the Nation
has made great progress toward improving and expanding community living
opportunities for people living with disabilities. Over the past 10
years, funding for long-term care services has grown at an average
annual rate of 6.3 percent, while spending on community-based long-term
services and supports has increased by an average of 11.8 percent per
year from $17 billion in 1999 to $52 billion in 2009.\1\ Annual
Medicaid expenditures for community-based services have increased from
a national average of only 27 percent of total Medicaid long-term care
expenditures to almost 45 percent of long-term care expenditures over
the period.\2\ More than half of all Medicaid LTC beneficiaries now
receive services in community settings.\3\ However, the demand for
community services continues to grow, and many individuals in need of
these services struggle without them. And while the number of people
served in community settings has grown, there are still over 1.6
million Americans receiving services in institutions, many of whom
would prefer to receive services at home; and many more individuals are
at risk of institutionalization, waiting for access to community-based
services. In addition, on-going State budget constraints threaten the
progress that has been achieved, raising concerns about compliance with
the ADA and Olmstead. In response to State budget constraints, however,
the Administration has requested $25.5 billion in its fiscal year 2011
budget submission to Congress for a 6-month extension of the Recovery
Act's temporary FMAP increase.
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\1\ Thomson Reuters analysis of CMS Form 64 Reports, 2010.
\2\ Thomson Reuters analysis of CMS Form 64 Reports, 2010.
\3\ Thomson Medstat, Medicaid Long Term Care Data Chartbook, CMS,
2003.
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In this context, we are very committed to moving forward with
existing and new initiatives. Our commitment at CMS is, of course,
shared Administration-wide. In June 2009, President Obama announced the
``Year of Community Living'' to mark the 10th anniversary of the
Olmstead v. L.C. decision. In that decision, the U.S. Supreme Court
affirmed that States are obligated to serve individuals in the most
integrated setting appropriate to their needs, and held that the
unjustified institutional isolation of people with disabilities is a
form of unlawful discrimination under the ADA.
Following the President's announcement, Secretary Sebelius
established the Community Living Initiative, led by the Department of
Health and Human Services (HHS), but designed to coordinate the efforts
of several Federal agencies, including CMS, to implement comprehensive
solutions that address barriers to community living for individuals
with disabilities and older Americans. Under this initiative, HHS is
partnering with the Department of Housing and Urban Development (HUD)
to improve access and affordability of housing for people with
disabilities and older Americans with long-term care needs. In addition
to the work of the Community Living Initiative to remove barriers and
provide better options for community integration, the HHS Office for
Civil Rights is collaborating with the U.S. Department of Justice (DOJ)
to advance enforcement of the ADA under the directive of the Olmstead
decision.
As you also know, Congress included several mechanisms in the
Affordable Care Act to address gaps in the availability of community
services for individuals with disabilities. The passage of the ACA
provides new and expanded opportunities to serve more individuals in
home and community-based settings and adds to the tools already
available so States can implement the integration mandate of the ADA as
required by the Olmstead decision.
As we work within the broad scope of the Community Living
initiative and the new authorities provided under the ACA, CMS is also
deepening its efforts in this area. On May 20, 2010, CMS issued a
letter to all State Medicaid Directors (SMD) to underscore the
importance of continuing to make progress consistent with the Olmstead
decision and to provide States with information on both new and
existing tools for community integration and to reiterate our support
for community living options for Medicaid beneficiaries living with
disabilities. I would like to take this opportunity to discuss several
of these existing approaches in more detail and also to touch on
exciting new opportunities under the ACA.
WAIVER AND STATE PLAN OPTIONS
The core mechanism that States have used to promote access to
community-based services and supports for Medicaid beneficiaries is
through the Home and Community-Based Services (HCBS) waiver. We are
continuously reviewing and assessing our policies and practices to
identify ways in which the Medicaid program can assist States in
achieving the requirements of the ADA, including assisting States in
efforts to serve more individuals in community settings. Forty-eight
States are operating over 300 HCBS waivers that serve over a million
individuals with disabilities. In 2009, HCBS services under both State
plans and waiver programs comprised 45 percent of Medicaid spending on
long-term care. This demonstrates impressive growth in community-based
options of approximately 13 percent since 2008 alone, while overall
spending on community options has tripled since 1999.\4\
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\4\ Thomson Reuters analysis of CMS Form 64 Reports, 2010.
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We must acknowledge, however, that there are significant
disparities across States in the level of investment in community
services. The percent of Medicaid long-term care funding directed
toward HCBS varies among States from 14 to 75 percent. In addition, the
HCBS investment varies significantly among different target
populations. The opportunities afforded under the ACA hold great
promise for all States to move forward in expanding HCBS options for
all individuals with long-term care needs.
The State plan options under Sections 1915(i) and 1915(j) of the
Social Security Act (the act) provide States with opportunities to
serve individuals in the most integrated setting without the
requirement of a waiver. Section 1915(i), which permits States to
provide HCBS as a State plan option, allows States to serve individuals
in the community without linking the benefit to either a current or
future need for institutional care. As of today, five States have taken
up the 1915(i) State plan option: Iowa, Wisconsin, Washington, Nevada,
and Colorado. States have found the section 1915(i) option to have
particular promise for improving access to community-based services for
individuals with mental and substance use disorders, a group which has
been an underrepresented element of previous waiver populations. With
the reforms enacted by the ACA, the State plan option offers even
greater promise as a tool to prevent institutionalization and to meet
mental health service needs in additional States. The ACA has also
provided for broader financial eligibility rules and a more expansive
array of services.
Section 1915(j) allows States to design self-directed personal
assistance or other HCBS for individuals who would otherwise receive
State plan personal care or HCBS waiver services. While not changing
the services available to individuals, 1915(j) gives States flexibility
in offering individuals the opportunity to exercise maximum choice and
control over their services. States offering services under 1915(j)
authority include: Arkansas, Florida, New Jersey, California, Oregon,
Alabama and Texas.
MONEY FOLLOWS THE PERSON (MFP) GRANTS
CMS also operates the Medicaid Money Follows the Person (MFP) grant
program, which was authorized in the Deficit Reduction Act of 2005. MFP
assists States in their efforts to reduce reliance on institutional
care, develop community-based long-term care opportunities, and
transition individuals living in institutions to community living. MFP
provides enhanced Federal matching funds to serve individuals who move
from institutional care to community integrated LTC settings.
Originally set to expire next year, the MFP program was extended
through September 30, 2016 under Section 2403 of the ACA, with an
additional appropriation of more than $2 billion. The ACA also modified
the time Medicaid beneficiaries must reside in institutions so those
individuals who do not reside in a facility for a long-term stay will
qualify for MFP at 3 months rather than 6 months. Now in its third
year, the MFP program has made it possible for almost 6,000 people to
live more independent lives by providing necessary supports and
services in the community. Currently, 29 States and the District of
Columbia have MFP programs. The extension and expansion of MFP under
the ACA will allow current MFP States to assist more individuals to
move to community settings and allow additional States to initiate MFP
programs.
We recognize that much more can be done through this demonstration
authority to expand its reach to more beneficiaries who could benefit
from this approach. The extension and expansion of MFP under the ACA
will allow current MFP States to assist more individuals to move to
community settings and allow additional States to initiate MFP
programs. CMS is finalizing a letter to State Medicaid Directors
providing guidance on the MFP extension and expects to announce a new
MFP grant solicitation this summer.
AGING AND DISABILITY RESOURCE CENTERS (ADRC)
The Aging and Disability Resource Centers (ADRC) program, a
collaborative effort of the Administration on Aging (AOA) and CMS, is
designed to streamline access to long-term care services and supports.
ADRCs play a critical role in supporting health and long-term care
reform by improving the ability of State and local governments to
effectively manage the system, monitor program quality, and measure the
responsiveness of State and local systems of care. ADRCs now operate in
at least one community in each of the 50 States and in four
Territories. There are currently more than 200 ADRC sites across the
Nation. A growing number of ADRCs have Medicaid applications available
on the Internet with seven of these allowing consumers to complete and
submit the application online. The ACA provides the opportunity for
CMS, in collaboration with its HHS partners, to expand the ADRC program
and similar models to ensure streamlined access to information and
service supports.
The Person-Centered Hospital Discharge Planning Model Grants,
created under the ADRC program, provides another avenue to strengthen
person-centered planning and community-based long-term care. CMS
awarded 10 of these grants between 2008 and 2009, totaling
approximately $12 million. These grants are designed to assist States
in developing hospital discharge planning structures and processes that
will place greater emphasis on involving consumers and their families
in after-care plans, including community-based alternatives to
institutional care. Grantee efforts to date include: development of
discharge planning checklists; patient and caregiver information kits
and hospital staff training webinars; enhancing online resource
directories; developing electronic referral, application, and tracking
systems; and employing transition coaches to follow-up with individuals
once they are discharged from the hospital back into the community.
CMS looks forward to continuing to work closely with the AOA on the
expansion of the ADRC program under the provisions of the ACA.
Improving the hospital discharge planning process and enhancing
community-based long-term care options are essential elements of an
effective community-based long-term care system.
NEW INFRASTRUCTURE REFORMS
In addition to the initiatives described above, the ACA created new
grant funds and enhanced Medicaid financing to support State efforts to
create more balanced long-term care services and support systems. The
new authorities provided by Congress under the ACA will allow CMS to
sustain and expand Federal support for States to provide long-term care
services in a community setting.
One provision in the ACA, known as the Community First Choice
Option, establishes a new Medicaid State Plan option, effective October
1, 2011, to allow States to cover home and community-based attendant
services and supports for individuals with incomes not exceeding 150
percent of the Federal poverty level (FPL) or, if greater, the income
level for an individual who has been determined to require an
institutional level of care. It also requires States to make such
services and supports available to individuals under a person-centered
plan of care for purposes of assisting them in accomplishing activities
of daily living, instrumental activities of daily living, and health-
related tasks through hands-on assistance, supervision, or cueing.
States are provided an additional 6 percentage point increase in
Federal Medicaid matching funds for services and supports provided to
such individuals. This increased match rate is a strong incentive for
States to re-orient spending to sustain these programs. Thank you, Mr.
Chairman, for your leadership on the Community First Choice Option.
Moreover, we hope that in this time of State budgetary constraints,
there will be great interest in the provisions that offer States
additional resources to effectuate widespread changes to their long-
term care support systems to better serve people with disabilities and
chronic conditions. The increased Federal match offered under the
Balancing Incentive Program and the Health Home Initiative will not
only expand access to key home and community-based services, but also
provide incentives for States to build lasting infrastructure to
integrate behavioral and physical health, improve care coordination,
and offer health promotion services for people with chronic conditions.
AVAILABILITY OF TECHNICAL ASSISTANCE
CMS also currently offers a variety of resources for technical
assistance to States regarding the design and operation of their
Medicaid programs. While we understand that States face unprecedented
budget shortfalls, we also recognize that the Medicaid program provides
strong partnership opportunities between CMS and States to support
community integration for people with disabilities. As part of this
partnership, CMS is committed to providing targeted technical
assistance to States to help them meet their obligations under the ADA.
Specifically, CMS will, at the request of a State, work with the State
to identify the Medicaid coverage, reimbursement and service delivery
options available to increase a State's system capacity to serve
individuals in the community. Technical assistance also can help
identify and support development of the strategies States can employ to
ensure that services meet the needs and preferences of each individual.
CMS offers technical assistance through a number of vehicles. The
National Quality Enterprise (NQE) is designed to assist States in
developing and improving the structures to ensure the health and
welfare of individuals served through HCBS waivers and State plan
options. The NQE, which provides assistance at no cost to States, is a
valuable resource that States can use to design and improve their
quality improvement systems.
Another source of technical assistance is provided through the MFP
Rebalancing Demonstration. This aspect of the MFP demo provides direct
technical assistance to participating States to reduce reliance on
institutional care while developing community-based long-term care
opportunities, enabling the elderly and people with disabilities to
fully participate in their communities. In addition, CMS supports the
ongoing operation of the National Direct Service Workforce (DSW)
Resource Center. The DSW Resource Center supports efforts to improve
recruitment and retention of direct service workers who help people
with disabilities and older adults to live independently and with
dignity. This Resource Center brings together the Nation's premier
resources on the topic of Direct Support Workforce and provides State
Medicaid agencies, researchers, policymakers, employers, consumers,
direct service professionals, and other State-level government agencies
and organizations easy access to information and resources they may
need about the direct service workforce. These resources, which include
web-based clearinghouses, technical experts, training tools and more,
are designed to address the full range of DSW consumer populations.
Additionally, CMS has published a technical assistance guide,
entitled Long Term Services and Supports in a Managed Care Delivery
System, which describes the various Medicaid authorities and structures
that States can use to enhance the availability of HCBS within managed
care delivery systems. These managed care delivery systems allow for
the use of capitation payments with both institutional and HCBS
services in a global budget, where the resources available to support
an individual can follow the individual wherever they choose to receive
their services. CMS is working to ensure that managed care arrangements
encompassing long-term services and support include all necessary
safeguards and protections to ensure the health and welfare of
individuals served.
IMPLEMENTATION OF PREADMISSION SCREENING AND RESIDENT REVIEW (PASRR)
Another mechanism currently available to States is the Preadmission
Screening and Resident Review (PASRR) process. Congress developed the
PASRR program to prevent inappropriate admission and retention of
people with mental disabilities in nursing facilities. Under Federal
requirements, States must assure that individuals with mental
disabilities or developmental disabilities being considered for
admission to a nursing facility are evaluated through the PASRR process
to determine the most integrated setting that can meet their needs. CMS
has established the new National PASRR Technical Assistance Center,
which provides technical assistance to States, at no cost, to
facilitate this reform activity. PASRR is a powerful tool for diversion
from institutions, and the resident review elements of PASRR are
important tools to help encourage transitions to the community.
ACCESS TO AFFORDABLE HOUSING AS A MEANS TO MAXIMIZE OPPORTUNITIES FOR
COMMUNITY LIVING
The lack of accessible and affordable housing continues to be an
obstacle to serving individuals in the most integrated setting. As part
of the Community Living Initiative, HHS has partnered with HUD to
improve access to affordable housing for people with disabilities. HHS
and HUD collaborated to provide housing support for non-elderly persons
living with disabilities to live productive, independent lives in their
communities rather than in institutional settings. HUD is offering
approximately $40 million to public housing authorities across the
United States to fund approximately 5,300 Housing Choice Vouchers for
non-elderly persons with disabilities, allowing them to live
independently. HHS will use its network of State Medicaid agencies and
local human service organizations to link eligible families to local
housing agencies who will administer voucher distribution.
Of the 5,300 vouchers set aside as part of this program, up to
1,000 will be specifically targeted for non-elderly individuals with
disabilities currently living in institutions but who could move into
the community with assistance. The remaining 4,300 may be used for this
purpose also, but are targeted for use by non-elderly disabled families
in the community to allow them to access affordable housing that
adequately meets their needs. HUD expects to have funding awards ready
before the end of 2010.
LOOKING FORWARD
July 26 will mark the 20th anniversary of the enactment of the ADA.
Much progress has been made over the past 20 years to improve the
quality of life for individuals with disabilities in the United States,
but the work remains unfinished. CMS recognizes the significant
progress made since the passage of the ADA and the Olmstead decision,
but we strongly believe that more can be done with the tools provided
to us, despite the challenges that Medicaid beneficiaries--who live
with disabilities, as well as States--face in the current uncertain
economic and fiscal climate. I assure you that CMS will be taking on a
leadership role both in implementing the new opportunities provided by
the Affordable Care Act, and also in assisting all States in meeting
their obligations under the ADA and the Olmstead decision. We intend to
capitalize on this opportunity by maximizing existing resources and we
look forward to working with States and the Congress in the future to
continue the vital work of improving the quality of life for
individuals living with disabilities in this country.
The Chairman. Thank you very much for your statement. Thank
you both, and thank you both for your great work in this area.
We'll start a round of 5-minute questions. Now, basically I
just want to talk to you both about Olmstead. I, like you, Mr.
Perez, I just thought this would be sort of self-actuating,
that things would just move. And we've watched over the
intervening 11 years. On the good side, we have moved ahead. As
Ms. Mann said, we're up to about 45 percent now, I think, if
I'm not mistaken.
But still there are so many places where--I think you even
pointed out in your written testimony, yours maybe or Ms.
Mann's--States are still building institutions. They're still
investing in building institutions, when clearly the direction
is just the opposite. What is it? What has been the biggest
obstacles to getting people--we have the Money Follows the
Person, and yet--and we know we have good data to show that
States really--it's cheaper. It really is more cost-effective
to support someone, let's say with 8 hours a day of attendant
services, than it is to give them 24 hours a day care in a
nursing home, or maybe even 4 to 6 hours. Maybe it's that small
intervention even in the workplace.
So from the standpoint of cost effectiveness, forgetting
just the humanity side of it, why don't States see this? Why
aren't they moving ahead more aggressively? What's been the
holdup? I'm just trying to figure this out. What do you see as
the biggest holdup in why States haven't moved more
aggressively?
Mr. Perez. That's the $64 million question, Mr. Chairman.
When I started this job as AAG, we went around and did a lot of
listening tours internally and elsewhere and I would ask, ``Why
are you doing something this way?'' And we got the answer,
``Because that's how we've always done it.'' If I were to sit
there and look at why we haven't made much progress, it's
because that's how it's always been done.
It doesn't have to be that way. I had the privilege of
working in the State of Maryland as a State cabinet official.
One thing I would observe from that vantage point and from the
vantage point at OCR from 10 years ago was that oftentimes when
we were doing our work we were introducing various State stove
pipes to each other, because in order to effect the systems
change that you're describing you need to bring a number of
different agencies to the table, both at a Federal level, which
we've been doing and I think have been successful at, and
equally importantly at the State level.
I won't name the State, but I vividly remember sending a
letter out post-Olmstead and the decision says the best way to
comply is to develop a comprehensive, effectively working plan
for moving people with disabilities into the community. And we
offered assistance in the development of that plan. When we had
that first meeting, we were quite literally introducing State
employees to each other.
So the stove piped nature of the delivery of these services
often creates barriers to the prompt transformation. Also, all
the wonderful programs that Cindy Mann administers are,
``waiver programs.'' So what that means is community is the
exception, institutionalization is the rule. So that ethic and
paradigm has pervaded for a long time.
So because we've always done it like this and because of
the structures of State governments, I think it ends up being
the way it is, although it's not the way it should be.
The Chairman. Ms. Mann.
Ms. Mann. Let me offer some additional observations. As you
noted, we have not seen a real decrease in the numbers of
people in institutions. So States don't see it as necessarily a
zero sum game, but as they are increasing home and community-
based services they see that they are adding more people to the
long-term care system, and I think they are, particularly in
these days, very focused on the cost.
So while the per-person cost of serving somebody in the
community is certainly less than serving somebody in the
institutions, the number of people needing services is growing.
The Chairman. What we call ``the woodwork.''
Mr. Perez. The woodwork.
Ms. Mann. The woodwork. Now, there is certainly a dispute
as to whether that woodwork is really prohibitively expensive
over time, that if you work your way through--in fact, you will
end up saving dollars, and there are certainly some studies to
that effect. But that certainly is the concern, and I would say
cost, fear of the cost anyway, is a considerable barrier.
Housing is a real barrier as well. We have certainly seen
that in the context of implementing MFP finding and assuring we
have appropriate housing available that's affordable for people
is a particular problem in rural communities--finding housing
that's also attached close enough to transportation options for
people.
The Chairman. And housing that is accessible.
Ms. Mann. Housing that is accessible, that's right, and
that allows somebody to participate in community life, so that
it's not isolated housing, but housing that allows people to
get connected to the job and be connected to their families.
We have some workforce issues, and I think the new
Affordable Care Act gives us some new tools and some new focus
on workforce issues. But we need to do more in that area as
well.
I will underscore I think, though, where Tom went, which is
that it can be done, it has been done. It is not easy, but with
persistence, with just clear leadership, I think we have seen
many States lead the way. So we're very much interested in--it
is not impossible at all. It is, in fact, very possible and we
need to lead the way.
The Chairman. I'd be interested, and I'm sure I speak for
Senator Enzi too, that we'd be interested in seeing those
States that have really done this, have done a good job. How
have they done this and could they be a template for others? So
if you have examples, we'd like to see them.
Senator Enzi.
Senator Enzi. Thank you, Mr. Chairman. That's exactly the
question I wanted to start off with.
First I wanted to thank both of our witnesses for their
tremendous enthusiasm and knowledge. But I wanted to see if
either of you could name a few States that we should be looking
at as shining examples of the Olmstead implementation, and what
do you think makes those States successful?
Ms. Mann. There are a couple States that come to mind.
Oregon has been a real leader in this area. Minnesota's been a
real leader in this area--just random States I picked.
[Laughter.]
But it's absolutely true. And it is not an overnight
occurrence. These are States that have struggled for the last
decade, through good times and in bad, and been very determined
that this is the direction that they're going in.
I think it also underscores the point you both made and
that Tom made as well, that it is a bipartisan commitment, but
it takes a real commitment to think about the housing issues,
to think about the workforce issues, and to decide this is the
direction we're going to go to have a clear goal in mind and to
get there.
We'd be happy also to provide some case studies. We've
certainly been doing this in the context of providing technical
assistance to States, here's what's been working, here's what's
not been working. To get States together and share their
experiences has also been a very powerful approach to move
other States forward.
Mr. Perez. I agree with everything that Cindy said. I would
note that oftentimes what we see is that there are States who
are successful moving certain populations of people with
disabilities. For instance, some States have been very
successful in moving people with developmental disabilities
into community-based settings.
But oftentimes what we'll look at, if we look at other sub-
populations of people with disabilities who can live in the
community, that program is more problematic in terms of moving
people out. My friendly amendment to your question, Senator,
would be to not only look in the aggregate at what States are
doing, but then to disaggregate so that we understand some of
the work that's being done with sub-populations, recognizing
that sometimes it has the consequence of making the waiting
list longer for other people with different forms of
disability.
I would note finally also that we both had the privilege in
former lives to work with the Kaiser Commission on Medicaid and
the Uninsured, which is a nonpartisan group, with Senator
Durenberger, Senator Mathias, and others. They have done a fair
amount of research in this area taking a look at the world of
waivers and the world of post-Olmstead. They did a hearing,
Olmstead at Five, in the Senate 6 years ago, and they are a
very good treasure trove for that sort of information.
Senator Enzi. Thank you.
Ms. Mann, I'd ask for you, if you have a document that you
could share on that, what's been working and what hasn't, that
would be very helpful in our deliberations.
I'm from Wyoming, which is definitely a rural State. We
only have 14 towns where the population exceeds the elevation.
Our biggest city is 52,000. Is there a difference in the rural
States? I think that to some degree they have more of a sense
of community, like to keep the people close at hand, and may be
able to service them better that way. But is there any
particular assistance that you give to rural States in
implementing this Olmstead when they have these capacity
barriers?
Ms. Mann. I think there are some particular issues that
rural communities face. We have several technical assistance
providers that we work with under contract, and one in
particular focuses on those sets of issues. One of the things
that we're working on going forward is to get some peer States
together to talk about what's working and what's not. We
actually have heard from States and think that there is reason
to pull some of the rural States together so that they can
exchange information.
I think some of the workforce issues and the housing issues
that we've talked about are just exacerbated often in rural
communities. At the same time, as you said, there's a real
strong sense of community. One of the things that I think the
Affordable Care Act and other options that we have available to
us allows us to work on more is family caregiving. So there are
also solutions and opportunities that I think are particularly
appropriate and suited for rural communities.
Senator Enzi. Thank you. My time has run out. I will be
submitting some questions in writing that I hope you'll answer,
because I am interested in any shining examples as well and
what might have caused those, as well as a number of other
questions.
Ms. Mann. We'd be glad to respond. Thank you.
Senator Enzi. Thank you, Mr. Chairman.
The Chairman. Thank you very much, Senator Enzi.
I have in order Senator Merkley, Senator Franken, and
Senator Hagan. So Senator Merkley, I understand Oregon has done
a pretty good job.
Statement of Senator Merkley
Senator Merkley. Thank you, Mr. Chair.
Indeed, the ability to continue aging in place has been a
huge emphasis in Oregon. We have one program called Operation
Independence, which is aimed exactly at this issue, and a
number of other approaches.
Thank you both for your testimony. Ms. Mann, there are
certain assumptions we have about the higher quality of life
one has in their own setting and some of the challenges in an
institutional setting. Those might be disorientation, self-
esteem, sense of purpose, depression, abandonment, and--maybe
on the medical side--greater risk of infections.
But are these comprehensively measured. Can you point to
any studies that really allow us to get a handle on the
disparity of quality of life between an institutional setting
and an in-community setting?
Ms. Mann. We can certainly look into that. We are doing a
couple of things along those lines. First of all, we listen a
lot to our partners in the community and what they tell us. So
I think in some respects they're our best evidence, and the
experiences, for example, like the gentlemen that Mr. Perez
noted before who had been in an institution and those who had
not.
We are looking at and developing what the hallmarks are of
community living. We've put out an ANPRM to try and get public
comments about what it means to be in community living, can you
have those hallmarks of community living in different kinds of
settings, what kinds of settings, can you have it in a group
home, does it need to be in your own apartment?
These are all difficult questions, not black and white
questions. So we're really reaching out to a very wide range of
stakeholders to help us think exactly those questions through.
I just wanted to note that certainly some people need to
have some care in a nursing home setting. In the context of our
survey and certification work on the quality of care in nursing
homes, we are also trying to bring in a sense of quality of
life and examine what's going on inside the nursing home as
well.
Mr. Perez. I would note, Senator, in connection with our
work under the Civil Rights of Institutionalized Persons Act
we've had a number of cases with specific institutions where
one of the metrics we were measuring was life expectancy of
people in that institution. In one case in particular, which
doesn't need to be named, but we measured life expectancy in
that institution against similar institutions and it was
considerably lower.
That's obviously not the only metric, but it was an
important metric to demonstrate the challenges that were rising
to the level of violation.
Senator Merkley. Thank you both. I think as we seek to
encourage more States to be aggressive in this area having
those type of metrics will help people get their hands around
it. Certainly the other side of it is the testimony of
individuals and that's extraordinarily powerful in favor of
community living.
An issue, Mr. Perez, that you raised was that of States
being concerned about the cost. Now, in many cases it's just a
lot less expensive to have someone housed in a community
setting, but not always. But how does one get their hands
around that issue of cost in terms of the infrastructure and
the services and so on and so forth, and are there rare
situations where it is a lot more expensive to have a program
that's in the community, and how does one address that in the
context of the Olmstead Act?
Mr. Perez. There's an ample evidence base demonstrating
that it is cost-effective for people with disabilities to live
in community-based settings. There have been a host of studies.
Cindy and Mr. Chairman talked before about the woodwork effect,
which is I think that parade of horribles that concerns States.
I think there is a robust evidence base demonstrating that that
is more of a hype than it is a reality.
Under the Olmstead decision and the ADA itself, the legal
question presented would be whether moving in this direction
would constitute, ``fundamental alteration.'' I don't believe
it would. Quite the contrary. And we have been working hard to
demonstrate that this is not only humane treatment and ensuring
compliance with the ADA, but it's in your enlightened economic
self-interest.
The challenge is that you have to look at this from a long-
term perspective, the long-term investments of your resources.
All too frequently right now, with the constraints that
confront States, long-term thinking is sometimes a little
elusive.
Senator Merkley. Well, thank you both very much for the
work you're doing. Tremendous.
The Chairman. Thank you, Senator Merkley.
Senator Franken.
Statement of Senator Franken
Senator Franken. Thank you, Mr. Chairman, for calling this
hearing.
A couple years ago I went to a teachers meeting and I was
there to find out about education issues. But a teacher came up
to me and was really panicked. She said that her brother, who
had been in a group home for 20 years or so, was getting kicked
out of his group home. He had developmental, mental issues or
emotional issues, and this was his home--he lived in a group
home, I think with four people.
What happened in Minnesota--which you say does this well
and maybe compared to other States we do--is they were de-
funding this. So I decided to find out more about it. What I
learned was that to some extent we were taking people out of
group homes that the State was paying for, counties were paying
for, and moving them. Again, this is someone who is very
delicate and vulnerable, and taking them out of a place that he
had lived for 20 years. This was why this woman was panicked.
What I found out about it was that they were de-funding
programs and that private operators of group homes were taking
over, and that they were spending less money. The way they
would spend less money is to pay less for care and give shorter
hours to the people taking care of those most vulnerable of our
citizens. These are great people who do this, who take care of
these people, and they don't do it for the money, but the
people I met do it because they love doing it and it gives
meaning to their lives.
I heard that the private owners of these group homes were
saying, ``OK, we don't need anyone to stay over at night,'' and
they reduced people's hours and they reduced the care, and they
were doing this to make money.
I guess my question is, Ms. Mann, what can you tell me
about private companies that cut corners and how patients
suffer? What are we doing on this front? And Mr. Perez, you can
answer me as well.
Ms. Mann. Well, I think there are corners being cut in lots
of different places. My first reaction to this story is how
awful it is to be that person and to be that person's family
and to be out of control, not being able to make that decision
about what goes on in the most important aspects of their life.
I think one of the really important ways in which we have
to rethink how we're approaching the care and support that
we're providing for people living with disabilities is to give
them back an ability to control and make their own decisions to
the fullest extent possible.
We have seen a lot of cutbacks. We have seen cutbacks going
on at the State level. We've had cutbacks going on in
individual provider levels. Personal care attendant services is
one area where we've seen cutbacks because of State budget
cuts.
Generally----
Senator Franken. I'm sorry, but do you have any comments in
particular about private companies?
Ms. Mann. About private?
Senator Franken. Yes.
Ms. Mann. Generally it would be, at least under the law--
now, whether or not that was actually what was happening--it
would be the State that would decide whether or not there's a
different standard that the provider is putting into place.
Now, we all know that in real life different providers apply a
standard in different ways. So then the question is how
aggressively is the State overseeing its different providers to
see that there's an evenhanded application of the rules.
Senator Franken. Mr. Perez, has this been a subject that
you've run into at all?
Mr. Perez. We had a case in the District of Columbia that
we were involved in involving a private facility and we argued
to the court--it was an ADA case--that the ADA required the
private provider to take steps to ensure the safety of the
individual who was residing in the group home. So we actually
did get involved in that particular case.
Senator Franken. That's one case, but I'm saying that as--
well, my time is up.
Mr. Perez. It's an absolute concern, Senator, and as we
move people into community-based settings and we build the
community infrastructure, we are ever mindful of the need to be
equally vigilant about oversight, because part of the answer
perhaps to Mr. Chairman's question before of why don't they do
this more quickly is because it's easier to oversee one
facility in the eyes of some States than to have people going
into 16 community-based settings, go to one place with 150
people as opposed to 20 places with 8 people.
Senator Franken. I'm going to end here, but I just wanted
to tell this story, because this is one family and one person,
but I wanted people to understand what this means to one person
and one family.
Thank you, Mr. Chairman.
The Chairman. Thank you, Senator Franken. Well, the story
of one person and one family, you can multiply that a million
times, and that's what's happening around the country.
Well, we just have to renew our efforts in this area. But
before I dismiss this panel, I wanted to ask this panel one
thing--oh, I'm sorry. Senator Hagan. I'm sorry. My gosh, I'm
getting involved in my own thinking here.
Sorry, Senator Hagan.
Statement of Senator Hagan
Senator Hagan. You're the chairman. That's OK with me.
But thank you, Mr. Chairman. I did want to say, this is the
first time I've seen Mr. Perez since a very, very cold morning
in February, I think it was 7 a.m., when----
Mr. Perez. Greensboro.
Senator Hagan [continuing]. For the Civil Rights Division
of the Attorney General's Office, he helped me and several
others cut the ribbon on the Woolworth's restaurant which is
now a civil rights museum, where the Greensboro Four, the four
young men from North Carolina A&T, began the sit-in movement at
the lunch counter. So that was a very, very cold morning and it
was certainly a great day in my State.
Mr. Perez. That was 10 or 15 years of your leadership in
getting that done. So I want to commend you for your
leadership.
Senator Hagan. It was a great day.
And I thank you for this hearing. Mr. Perez, in your
testimony you mentioned a young man named Paul Boyd who has had
to remain in an institution because of long waiting lists he
faces to access services. I think he wants to go get a master's
degree and has issues with transportation and night classes, ET
cetera. But we need to ensure that people like this young man
have access to community care programs so that they can be
productive members of society.
I was wondering, toward that end, have there been any
analysis of the cost of providing community care compared to
the increased productivity among those who are disabled but
still able to work?
Mr. Perez. There have been and there again is a robust
evidence base demonstrating that community-based care is cost-
effective, that you can do it and actually save States money in
the long run. And that doesn't even take into account then the
additions to the Federal treasury from having people with
disabilities--and the unemployment rate, as you know, for
people with disabilities is north of 50 percent nationally, and
having more people employed means we have more people paying
into our tax base.
It's very compelling, the cost-effectiveness argument that
can be made.
Senator Hagan. To date have there been any analyses done on
the costs and benefits of the Money Follows the Person
demonstrations?
Ms. Mann. Yes. There's been an evaluation and we can
provide you and your office with the evaluation and what we've
learned so far. We are constantly re-looking with our States at
what's working and what's not and trying to look for
improvements. We've seen pretty slow startup numbers in Money
Follows the Person, but our numbers in 2010 are much stronger
relative to any of the prior 3 years, and we're really hopeful
that the extension will build on the base that's been provided
and the learnings that have occurred, so that we can really
grow that progress by leaps and bounds over the next period of
time.
Senator Hagan. Do you have any examples, one example that
you can address on that, as to how that works?
Ms. Mann. How the Money Follows works?
Senator Hagan. Yes.
Ms. Mann. States get grants and there's enhanced match for
some services. It's 100 percent paid for by the Federal
Government, and it allows the State to set up systems,
infrastructures, to bring in peer supports, whatever may be
necessary to help transition people from an institution into
the community.
Then the grant also allows them to pay for the community-
based services for the first 365 days after they've
transitioned out of the community. So it's setting up a care
plan, making sure that the services are available in the
community, setting up the community setting, making sure that
the person has the services they need.
Then some of the rub comes in, because of what happens
after the 365 days.
Senator Hagan. That was my next question. After the next
year, with the States having extreme budget problems that
everybody's in right now----
Ms. Mann. That's right, and that's where we've had
problems.
Senator Hagan. That's a stumbling block.
Ms. Mann. That's correct.
Senator Hagan. Well, Ms. Mann, in your testimony you
mentioned that there are still over 1.6 million Americans
receiving services in institutions. That certainly seems like
quite a huge number. Of those 1.6 million Americans, how many
do you estimate are on community-based living waiting lists?
Ms. Mann. Waiting lists? We don't really know. Some States
don't create waiting lists. Some States have waiting lists for
certain--as Mr. Perez was talking about before, there is
different waivers for different types of disabilities, so that
if a State doesn't run a home and community-based waiver for
your type of disability in an institution, you may not be on a
waiting list even though you are waiting.
So it is hard to get a real accurate sense of the need from
just looking at the waiting lists. I think some of what the
Office of Civil Rights is doing in terms of its work inside
institutions to be able to identify what portion of the people
in the institutions want to be and believe they can live their
lives productively outside of the institution is one of the
most direct ways we have of really measuring that.
Mr. Perez. The assessments haven't always been done, and so
that's why it's difficult to quantify the percentage of people
in that broader figure. Olmstead talks about having an
assessment done by a treatment professional and part of our
work is to ensure that those assessments are, in fact, being
done and that they're done by a qualified treatment
professional.
Ms. Mann. That's certainly part of what Money Follows the
Person looks at and encourages.
Senator Hagan. You also mentioned in your testimony that
CMS works with States to provide technical assistance to meet
community-based requirements. Can you tell me what some of the
technical assistance provisions are?
Ms. Mann. We have a number of different contracts that we
work with, that we have working with States. Our staff will
work tirelessly with a State that comes in and says: ``I'm
thinking of moving in this direction;'' ``I'm stuck,'' or
``I've gone in this way and I've had a problem,'' or ``DOJ is
after me, what should I do,'' whatever the circumstances might
be.
One of the things that we did in our May 20 letter to State
Medicaid directors is to try and remind them that there is
really a wide array of options, so that on a piece of paper
they can see those options, and then to invite them to work
with us, in some cases to work with our contractors, to think
about what are the options that are most viable for them, given
their particular circumstances.
Senator Hagan. Thank you, Mr. Chairman.
The Chairman. Thank you, Senator Hagan. Again, I apologize.
I guess I was just thinking about one question I wanted to ask
Ms. Mann before you left.
Do you think the 6 percent is going to be enough? I'm
talking about the Community First Choice Option beginning
October 2011. We wrestled with that and I don't know if you
have any feel for it. But what do you think? Do you think that
6 percent bump-up in FMAP will be enticing enough?
Ms. Mann. I'm optimistic that it will be. It's certainly
not an insignificant bump-up for States, Senator. We've heard
some really positive reactions from States. I think time will
tell and it depends how long this period of economic downturn
continues. But at least it's getting people's attention, let's
put it that way. They're noticing that it's there and see it as
an important part of helping them move forward, and whether it
proves to be sufficient, we'll certainly be watching that
closely and wanting to work closely with you about what we're
seeing.
The Chairman. Great.
Tom, have you got any last comments?
Mr. Perez. Thank you for your leadership. Civil rights is
about persistence and you're one of the most persistent leaders
I have ever met, Mr. Chairman.
The Chairman. I'll return the compliment. I thank you and
Ms. Mann both for your aggressive championing of people with
disabilities in all aspects. I just can't thank you enough.
Mr. Perez. Thank you.
The Chairman. I appreciate it.
Ms. Mann. Thank you.
The Chairman. We'll call our second panel. Our first
witness is Robert Bernstein. Dr. Bernstein is Executive
Director of the Bazelon Center for Mental Health Law in
Washington, DC. A nationally recognized expert on public mental
health, he was the architect of an innovative system serving
people with persistent mental illnesses in integrated
community-based settings.
He holds a doctorate in psychology and is also an
experienced clinician. He has served as an expert for the U.S.
Department of Justice and State protection and advocacy
agencies. Dr. Bernstein joined the Bazelon Center in 1997.
Our second witness is Jeffrey Knight. Mr. Knight is an
individual with a disability who is a current beneficiary of a
home and community-based waiver, as well as the Money Follows
the Person Rebalancing Initiative in the State of Maryland.
Mr. Knight was born in Virginia and graduated from Warren
County High School. After graduation he lived on his own,
supporting himself at the age of 18. He worked for over 11
years for Fort Detrick in Frederick, MD. Over 2 years ago, Mr.
Knight entered the hospital because of seizures. He eventually
was placed in a nursing facility. He lived at Citizens Nursing
Home, a county-owned facility. During his 2 years in the
nursing facility he sought help to return to the community and
he fought hard to leave the facility and gain back his freedom.
On October 1, 2009, he was able to leave the nursing home
through the use of a Medicaid waiver and the Money Follows the
Person program in Maryland. He is currently living in the
community and enjoying the opportunities of community life.
I might just note that he began with 16 hours of personal
assistance per day and now he's down to 8 hours, and he's
become a self-advocate, as I'm sure we'll hear here pretty
soon.
The third witness is Nancy Thaler, Executive Director of
the National Association of State Directors of Developmental
Disabilities Services, which serves 50 States and the District
of Columbia, and keeps State leaders informed about Federal
policy and service innovations. Ms. Thaler began her career in
1971 working in nonprofit agencies, developing community
services for children and adults with developmental
disabilities.
Joining the Pennsylvania State Government in 1987, she
managed a system of institutional and community services for
over 80,000 individuals. Ms. Thaler's leadership enabled the
expansion of community services for Pennsylvanians with
disabilities, resulting in a 50 percent reduction of the
institutional population during her tenure. Fantastic.
Then last we have Kelly Buckland, Executive Director of the
National Council on Independent Living (NCIL), which we all
know as ``Nickel.'' Mr. Buckland has been actively involved in
disability issues since 1979. He started his career as an
employee for Idaho's protection and advocacy system. He served
for over 20 years as the Executive Director of the Boise Center
for Independent Living and the Idaho State Independent Living
Council.
Mr. Buckland has served on the NCIL Governing Board since
1998, as vice president from 2001 to 2005, and as president
from 2005 to 2009. He has been honored with numerous State and
national awards, graduated from Boise State University with a
B.A. in social work, and, most important of all, earned his
master's degree in rehabilitation counseling from Drake
University in Des Moines, IA.
Welcome, all of you, to this panel. As I said for the first
one, your statements will be made part of the record in their
entirety. I'd ask if you might just--and we'll just go from
left to right--just sum up in 5 minutes or so your main points,
so we can engage you in a conversation.
Mr. Bernstein, welcome and again congratulations to you and
the Bazelon Center for all the great work you've done.
STATEMENT OF ROBERT BERNSTEIN, Ph.D., EXECUTIVE DIRECTOR,
BAZELON CENTER FOR MENTAL HEALTH LAW
Mr. Bernstein. Thank you very much, Mr. Chairman, and thank
all members of the committee for allowing me to testify today.
I'm pleased to testify about the Americans With Disabilities
Act, legislation that is crucially important to people with
mental illness. My name is Robert Bernstein and I'm President
and Director of the Bazelon Center for Mental Health Law, which
has been advocating for the rights and social inclusion of
people with mental illness for almost 4 decades.
I began my work as a psychologist in public mental health,
where I learned firsthand how law and policy define or
foreclose opportunities for people with serious mental illness,
particularly those who rely on public assistance.
From the ADA's inception, the Bazelon Center has worked to
make sure that its protections include people with mental
disabilities, and we continue to advocate in the courts, with
legislative bodies, and with Federal and local agencies to
ensure that it has its intended impact. No group of disabled
Americans has been subjected to more harmful and enduring
discrimination than people with serious mental illness.
Hundreds of thousands of these Americans were once physically
segregated behind the locked doors of State hospitals based on
fear, disdain, or the perception that there were no viable
alternatives. In many ways, sadly, as you heard earlier, this
history remains with us today, in nursing homes, board-and-care
facilities, and jails across the Nation.
The ADA for us represents a very ordinary vision, but one
that dramatically departs from this history, a vision that
people with serious mental illness may have homes they can call
their own and participate in society as neighbors, friends, and
co-workers, and that they be judged as individuals, untarnished
by shaming stereotypes.
Of course, the bold act of Congress, for which we're
eternally grateful, even when bolstered by the U.S. Supreme
Court's landmark Olmstead, does not instantly reverse
discrimination that is embedded in society and reflected in its
institutions. But on this 20th anniversary of the ADA's
enactment, I'm happy to report that we have at least begun to
think about mental disability and the role of public systems in
very different ways.
Nationally, we see examples of programs demonstrating that
people with serious mental illness, even those who have been
institutionalized for many, many years, can recover, live in
their own homes, outside of psychiatric ghettos, and not be
regarded as ``ex-mental patients.'' Scattered-site supportive
housing is a powerful model that the Bazelon Center is strongly
endorsing. Through local programs providing flexible,
individualized services and supports to people in their own
homes, individuals who were once consigned to isolated
custodial settings now fulfill the vision of the ADA.
Generally, as you've heard, this is achieved at costs that
are lower than or, at most, equal to institutional care. These
individuals not only realize their personal dreams, but by
example demonstrate that the ambitious goals of the ADA are
achievable even among a group as derided as people with serious
mental illness.
Our challenge today is not so much know-how or even
demonstrating cost neutrality, as it is deconstructing the
systemic barriers and vested interests that sustain segregation
and low expectations. Large State hospitals may be relics of
the past, but many people with serious mental illness remain on
the margins of society because supportive housing and other
good programs are in short supply. Often, access to these
programs is targeted to groups that have been visibly failed by
human services systems, people with frequent hospitalizations
or those who are homeless or incarcerated, for instance.
However, many more people with serious mental illness languish
in archaic facilities such as nursing homes, group homes, and
the infamous adult homes in New York City that a Federal court
recently declared in violation of the ADA.
Such facilities may be physically located in communities,
but they are not at all what one would consider homes. The
residents remain isolated from community life and they have no
privacy, no meaningful personal choice, and no hope for
something better. Their rights under the ADA notwithstanding,
individuals living in these settings are often mischaracterized
by public systems as successfully placed because they are no
longer in hospitals. And, in the absence of litigation, they
are no one's priority.
For this reason, the Bazelon Center is working closely with
the U.S. Department of Justice toward vigorous enforcement of
Olmstead and to ensure that its benefits extend to all people
with serious mental illness, including those who remain hidden
on the sidelines. We are also working closely with the Centers
for Medicare and Medicaid Services to extend to people with
serious mental illness initiatives such as Money Follows the
Person, that have promoted Olmstead for other disability
groups, but have rarely reached people with serious mental
illness.
We are grateful for support from SAMHSA that allows us to
provide technical assistance to States around Olmstead
implementation, and one potential source of funding for the
services we seek is the SAMHSA mental health block grant, which
needs to be restructured to be more targeted and to focus more
directly on the ADA as a priority.
Last year on the tenth anniversary of the U.S. Supreme
Court's decision, the Bazelon Center issued a call to action
titled ``Still Waiting--The Unfulfilled Promise of Olmstead.''
I provided your staff with copies of this. In this report, we
decried the slow progress toward integration and listed many
opportunities for Federal, State, and local action.
Fulfillment of this promise is important to all of us, not
only because it will represent a more just society, but also
because America will fully benefit from the now-unrealized
contributions of people with mental illness.
Thank you for this opportunity to testify. I look forward
to your questions.
[The prepared statement of Mr. Bernstein follows:]
Prepared Statement of Robert Bernstein, Ph.D.
Mr. Chairman and members of the committee, I am pleased to testify
before you today about the Americans with Disabilities Act (ADA),
legislation that is crucially important to people who have mental
illness. My name is Robert Bernstein and I am the president and
director of the Bazelon Center for Mental Health Law, which has
advocated for the rights and social inclusion of people with mental
disabilities for almost four decades. I began my work as a psychologist
in public mental health, where I learned first-hand how law and policy
define--or foreclose--opportunities for people with mental illness,
particularly those who must rely on public systems.
From the ADA's inception, the Bazelon Center has worked to make
sure that its protection include people with mental disabilities, and
we continue to advocate in the courts, with legislative bodies, and
with Federal and local agencies to ensure that it has its intended
impact. No group of disabled Americans has been subjected to more
harmful and enduring discrimination than people with serious mental
illness. Hundreds of thousands of these Americans were once physically
segregated behind the locked doors of huge abusive State hospitals,
based on fear, disdain or the perception that there were no viable
alternatives. In many ways, that history remains alive--in nursing
homes, board-and-care facilities and jails across the Nation.
The ADA represents a very ordinary vision, but one that
dramatically departs from this history: A vision that people with
serious mental illness have homes they can call their own and
participate in society as neighbors, friends and co-workers, and that
they are judged as individuals, untarnished by shaming stereotypes.
Recognizing the harmful effects of ingrained discrimination and
inaction--or even resistance--by States to the reforms demanded by the
ADA, the Bazelon Center played an important role in defending the law's
``integration mandate'' when Olmstead came before the Supreme Court.
Gleaning the essence of the ADA and the larger civil rights movement
for people with mental illness, the Supreme Court found in Olmstead
that ``Unjustified isolation . . . is properly regarded as
discrimination based on disability.''\1\ Without question, the marginal
social status of many individuals who have serious mental illness is
the product of such discrimination. Further, the Supreme Court affirmed
that public systems' unnecessary consignment of people with mental
illness to institutional living, ``perpetuates unwarranted assumptions
that persons so isolated are incapable or unworthy of participation in
community life.''\2\
---------------------------------------------------------------------------
\1\ Olmstead v. LC, No 98-536 (U.S. Sup Ct, June 22. 1999).
\2\ Ibid.
---------------------------------------------------------------------------
Of course, a bold act of Congress--even when bolstered by a
landmark Supreme Court decision--does not instantly reverse
discrimination that is embedded in society and reflected in
institutions. But on this 20th anniversary of the ADA's enactment. I am
happy to report that we have at last begun to think in very different
ways about mental disability and the proper role of public systems.
Recovery and hope have replaced containment as the new focus of public
mental health services.\3\ And nationwide, we see many examples of
programs demonstrating that people with serious mental illness can
recover, live in their own homes outside of psychiatric ghettos and not
be regarded as ``ex-mental patients.'' Scattered-site supportive
housing is a powerful model that the Bazelon Center is promoting to
support successful community membership among people with serious
mental illness.\4\ Through local programs providing flexible,
individualized services and supports to people in their own homes,
individuals who were once relegated to isolated custodial settings now
fulfill the vision of the ADA. These individuals not only realize their
personal dreams but, by example, demonstrate that the ambitious goals
of the ADA are achievable, even among a group as derided as people with
serious mental illness. And as we have seen in New York, where the
Department of Justice has joined the Bazelon Center and local advocates
in litigation to allow residents of archaic adult homes to live in
scattered-site supportive housing, the very individuals who were once
confined in these settings are reaching back to assist their peers in
re-entering community life.\5\
---------------------------------------------------------------------------
\3\ New Freedom Commission on Mental Health, Achieving the Promise:
Transforming Mental Health Care in America. Final Report. DHHS Pub. No.
SMA-03-3832. Rockville. MD: 2003.
\4\ See http://bazelon.org.gravitatehosting.com/
LinkClick.aspx?fileticket=q6Fsul.6o_jw%3d&
tabid=241.
\5\ See http://bazelon.org.gravitatehosting.com/In-Court/Current-
Cases/Disability-Advocates-Inc.-v.-Paterson.aspx.
---------------------------------------------------------------------------
Ironically, these positive outcomes in supportive housing can be
achieved at costs that are lower than, or at most equal to,
institutional care. The cost of serving a person in supportive housing
is half the cost of a shelter, a quarter the cost of being in prison
and a tenth the cost of a State psychiatric hospital bed.\6\ And
supportive housing is not unique in this regard. For instance:
\6\ Houghton, The New York/New York Agreement Cost Study: The
Impact of Supportive Housing on Services Use for Homeless Mentally Ill
Individuals, May 2001, 6-7. http://www.csh.org/index.cfm/
?fuseaction=Page.viewPage&pageID=3251.
Investments in treatment and parole services could save
States $4.1 billion. For example, every dollar spent on community-based
drug treatment avoids $18 in State spending.\7\
---------------------------------------------------------------------------
\7\ Justice Policy Institute, Pruning Prisons: How Cutting
Corrections Can Save Money and Protect Public Safety, http://
www.justicepolicy.org/content-hmID=1811&smID=1581&ssmID=84
.htm.
---------------------------------------------------------------------------
An in-home crisis intervention program for psychiatric
patients found that nearly 81 percent could be treated at home and that
patients who received home care were less likely to be re-admitted to
the hospital. Considering that the average 2007 Medicare payment was
$137 for a home health day versus $1,447 for a hospital day and $325 in
a skilled nursing facility, the home-care option can produce
significant savings.\8\
---------------------------------------------------------------------------
\8\ Agency for Healthcare Research and Quality, Home Health's
Ability to Control National HealthCare Costs, http://www.ahhqi.org/
download/File/databook/ControlCosts.pdf.
---------------------------------------------------------------------------
Systems of care for children reduce inpatient hospital
days, saving an average $2,777 per child, and arrest rates, for average
per-child savings of $784. Multi-systemic therapy for high-risk youth
saves more than $31,661 in subsequent costs to the criminal justice
system, while multidimensional treatment foster care for troubled youth
saves $43.70 in residential treatment costs for every dollar spent.\9\
---------------------------------------------------------------------------
\9\ Daly, R. Mentally Ill Youth Do Best In Community Care Settings,
Psychiatric News, June 2, 2006; Washington State Institute for Public
Policy, The Comparative Costs and Benefits to Reduce Crime, 2001,
http://www.wsipp.wa.gov/rptfiles/costbenefit.pdf.
Our challenge today is not so much demonstrating that we know how
to assist people with serious mental illness in realizing their rights
under the ADA, or even in demonstrating that the outcomes we seek are
fiscally sound. Much more at the forefront of our advocacy in pursuit
of community integration for people with serious mental illness is the
task of deconstructing the systemic barriers and challenging the vested
interests that sustain segregation and low expectations. Large State
hospitals may be relics of the past, but many people with serious
mental illness remain on the margins of society because supportive
housing and other good programs are in short supply. Often, access to
these programs is targeted to groups that have been visibly failed by
human service systems--people with frequent hospitalizations, or those
who are homeless or incarcerated, for instance. However, many more
people with serious mental illness languish in archaic facilities, such
as nursing homes, group homes and the infamous ``adult homes'' in New
York City that a Federal court recently declared in violation of the
ADA.\10\
---------------------------------------------------------------------------
\10\ See http://bazelon.org.gravitatehosting.com/In-Court/Current-
Cases/Disability-Advocates-Inc.-v.-Paterson.aspx.
---------------------------------------------------------------------------
Such facilities may be physically located in communities--and some
even have the physical appearance of houses--but they are not at all
what one would consider homes. The residents remain isolated from
community life and they have no privacy, no meaningful personal choice,
and no hope for something better. They often live with assigned
roommates and may receive visitors only at defined times and in defined
areas of the facility. The rights of these individuals under the ADA
notwithstanding, people living in these settings have been
mischaracterized by public systems as ``successfully placed'' because
they are no longer in hospitals. Ironically, even as they face dire
budgetary cuts, States continue to waste money by consigning people
with mental illnesses to such institutional settings, often pressured
by profit-making providers. While the annual cost of housing someone in
these places may range $60,000 or more, it costs only $22,500 a year to
provide independent housing with a full range of supportive services
for a person with a serious mental illness--and this in New York City,
one of the Nation's highest housing markets.\11\ As documented by the
media nearly every day, public mental health systems, instead of
shifting to such cost-effective (and Olmstead-compliant) approaches,
continue to struggle.
---------------------------------------------------------------------------
\11\ Bazelon Center for Mental Health Law, Still Waiting . . . The
Unfulfilled Promise of Olmstead. A Call to Action on the 10th
Anniversary of the Supreme Court's Decision, 2009, http: //
bazelon.org.gravitatehosting.com/LinkClick.aspx?fileticket =
S5nUuNhJSoM%3d&tabid =
104.
---------------------------------------------------------------------------
This is not to suggest that public mental health is adequately
resourced--in part reflecting public attitudes about people with
serious mental illness, State mental health systems were never
adequately funded to achieve the basic ambitions of de-
institutionalization, let alone the goal of recovery. And growth in
States' mental health spending (even during times when State coffers
were flush) has lagged far behind that for other State agencies,
representing about half of the growth in spending within their
corrections systems.\12\ But even in today's difficult times, a more
rational use of available dollars could very dramatically increase the
availability of housing and supportive services that allow people with
serious mental illness to realize their rights under the ADA.
---------------------------------------------------------------------------
\12\ Ibid.
---------------------------------------------------------------------------
Shortly after Olmstead was decided, the Bazelon Center issued a
report entitled Disintegrating Systems: The State of States' Public
Mental Health Systems.\13\ In that report, we anonymously quoted the
mental health commissioner from a large State who was frustrated at the
daunting systemic and political barriers (and, notably, not clinical
barriers) that would need to be overcome if people with serious mental
illness are to realize their rights under Olmstead. That State
commissioner told the Bazelon Center: ``Someone should sue us.''
---------------------------------------------------------------------------
\13\ Bazelon Center for Mental Health Law, Disintegrating Systems:
The State of States' Public Mental Health Systems, 2001.
Three years later, the Bazelon Center issued a statement on the
impact of the ADA and the Olmstead decision to people with serious
---------------------------------------------------------------------------
mental illness:
Where real progress has occurred, it is largely because
States have been sued. Five years after Olmstead and 14 years
after enactment of the Americans with Disabilities Act,
litigation should be unnecessary. Yet it remains the single
most effective way to combat the persistent segregation of
people with mental illnesses.
It's past time for Olmstead implementation to move out of the
courtroom and into America's communities.\14\
---------------------------------------------------------------------------
\14\ Ibid.
Although the Bazelon Center has a vibrant, longstanding and
nationally recognized litigation agenda, it is a sad commentary that,
in the face of obvious social, moral and fiscal arguments, we still
need to turn to the courts to enforce the basic rights of these
Americans. Yet, in the absence of litigation, people with serious
mental illness are no one's priority--particularly those who live quiet
lives, robbed of hope and isolated in archaic congregate facilities.
For this reason, the Bazelon Center is working closely with the
U.S. Department of Justice toward vigorous enforcement of Olmstead and
to ensure that its benefits extend to all people with serious mental
illness, including those who remain hidden on the sidelines. We are
also working closely with the Centers for Medicare and Medicaid
Services to extend to people with serious mental illness initiatives,
such as Money Follows the Person, that have promoted Olmstead outcomes
for other disability groups. We are grateful for support from the
Substance Abuse and Mental Health Services Administration (SAMHSA) that
allows us to provide technical assistance to States around Olmstead
implementation. And one potential source of funding for the services we
seek is the SAMHSA Mental Health Block Grant, which needs to be
restructured to be more targeted and to focus more directly on the ADA
as a priority.
Last year, on the 10th anniversary of the Supreme Court's decision,
the Bazelon Center issued a call to action titled Still Waiting--The
Unfulfilled Promise of Olmstead, in which we decried the slow progress
toward integration and listed many opportunities for Federal, State and
local action.\15\ My testimony today reflects many of the findings from
our report. Our recommendations for Federal actions call for Congress
and the Federal agencies to carefully consider what we have learned in
the 20 years since enactment of the ADA, including our successes,
missed opportunities, and understanding of the system dynamics that
have stalled progress for people who have serious mental illness.
---------------------------------------------------------------------------
\15\ Ibid.
---------------------------------------------------------------------------
The recent healthcare reforms enacted by Congress move us
significantly forward in expanding access to coverage and addressing
mental health as an aspect of overall health, on par with medical and
surgical care. The impact of this legislation for people who have
mental illness, particularly with regard to their rights under the ADA
and Olmstead, will be defined in the law's implementation. Among our
recommendations for Federal actions, which may be of particular
interest to the committee, we urge Congress and the Federal agencies
to:
Include in healthcare reform incentives that adequately
address the needs of people with serious mental illnesses. The law
requires that the essential benefit include rehabilitation services,
but these are not defined. It will be critical for the Department of
Health and Human Services (HHS) to define this term so as to include
coverage of psychiatric rehabilitation, peer support and case
management services.
Establish linkages between private plans and the public
mental health systems. Comprehensive systems that address a person's
total health care needs, such as medical homes, need to address mental
health issues and specialized medical homes that serve individuals with
serious mental illness (such as are authorized as a demonstration of
SAMHSA) need to be expanded.
Pass the Community Choice Act, which would make a package
of home- and community-based services a mandatory Medicaid service for
individuals who would otherwise be served in institutional settings.
Amend Medicaid to give States the option to provide home-
and community-based services to children with serious mental disorders
who are at risk of placement in residential treatment facilities (at
this time, these facilities do not qualify as ``institutions'' under
the section 1915(c) authority).
We recommend that CMS, as the agency administering the Medicaid
program, should:
Issue letters to State Medicaid directors highlighting
both ways for States to facilitate integration and options for
financing services in integrated settings for people with mental
illness.
Clarify that while Medicaid permits States to limit the
number of individuals served in waivers, Olmstead may require that
limits on waiver participation be lifted. CMS should streamline and
accelerate the waiver process and condition renewal on States expanding
the waiver to cover more people.
Revamp the Federal rules on rehabilitation services to
encourage States to furnish the evidence-based services that have
proven effective in helping people with serious disorders to live in
the community.
Encourage the use of homes or homelike settings, by paying
for therapeutic foster care for children.
Accelerate its actions toward aggressive enforcement of
current requirements for screening of individuals prior to nursing-home
placement. The intent of this underutilized mandate--known as Pre-
Admission Screening and Resident Review (PASRR)--is to avoid
inappropriate Medicaid expenditures for institutional care and the
``dumping'' of people with mental illnesses who should be served in
their home communities. While pre-dating enactment of the ADA, PASRR
should serve as a powerful tool to avert unwarranted institutional
segregation.
Enforce the ``IMD'' rule that prohibits Medicaid payment
for mental health services to people between the ages of 22 and 65 in
an ``institution for mental diseases''--a facility in which a
significant percentage of residents have mental illnesses.
We are heartened by recent actions by CMS and the Department of
Housing and Urban Development to promote supportive housing for people
with serious mental illness, using HUD funds and Medicaid. In addition,
Congress should:
Enact and fully fund the Melville Supportive Housing
Investment Act to improve Section 811 Supportive Housing for Persons
with Disabilities. Once the law is enacted, the administration should
initiate HUD planning to implement its provisions expeditiously.
Ensure dedicated support for the National Housing Trust
Fund to produce or preserve 1.5 million homes and 200,000 new Housing
Choice vouchers per year for the next 10 years. HUD regulations and
guidelines for implementation of the Fund must prioritize creation of
new affordable supportive housing for people with disabilities who have
SSI-level incomes. (In most urban areas, market rent exceeds monthly
SSI disability payments).
Sustain existing supportive housing by renewing with
predictability and stability its funding for rent and operating
subsidies and services.
Create incentives within the HOME program to encourage
State and local housing officials to prioritize permanent supportive
housing. For example, a percentage of HOME funds could be set aside for
permanent supportive housing.
Increase Federal funding for re-entry supportive housing
vouchers and services for people with mental illnesses leaving
correctional facilities. One way is through creation of a bridge
rental-voucher program in which the Justice Department's Bureau of
Justice Assistance awards grants for vouchers to State and local
jurisdictions.
Make clear that States violate Olmstead when they direct
SSI money to uses that promote segregation of individuals with
disabilities in private facilities (including board and care homes).
Ensure that the Section 8 housing certificates allocated
to individuals with disabilities are actually in the hands of such
individuals.
We have been working closely with leadership within the Department
of Justice (DOJ) and highly commend its increasing attention to the ADA
rights of people with serious mental illness. DOJ, in some cases along
with other agencies, should:
Vigorously enforce Olmstead, including by filing cases
that raise solely Olmstead claims.
Adopt legal positions that would make Olmstead enforcement
more effective.
The Office of Civil Rights (OCR) of HHS should also enforce
Olmstead vigorously. OCR should:
Broaden its enforcement efforts beyond those primarily
driven by individual complaints; rather, evidence of systemic issues,
including evidence other than complaints, should inform OCR's
activities.
What we conclude is lacking for people with mental illness to fully
realize their rights under the ADA and Olmstead--and what is urgently
needed--is political will. Fulfillment of the promise of the ADA is
important to all of us not only because it will represent a more just
society, but also because America will fully benefit from the now
unrealized contributions of people with mental illness.
Thank you for this opportunity to testify. I look forward to your
questions.
The Chairman. Mr. Bernstein, thank you very much for an
excellent statement.
Now we'll turn to Jeffrey Knight. Mr. Knight, welcome to
this committee.
STATEMENT OF JEFFREY KNIGHT, FREDERICK, MD
Mr. Knight. Hello, Senator Harkin and committee members.
I'm just nervous, this is my first time. Thank you for giving
me the opportunity, the chance to tell you my story. My name's
Jeffrey Knight. I spent 2 years at Citizens Nursing Home. I
entered the hospital after having an epileptic seizure and was
placed in the nursing home because I could no longer walk.
It took me 2 years to leave the nursing home. At the time I
went into the nursing home, I told myself I would get out and
would not spend my life there, and I wanted my own apartment
and to regain my freedom. Before I went into the nursing home,
I lived at home and worked a job for 11 years at Fort Detrick.
In the nursing home they treated me like a baby. They tell you
when you can eat and when you can sleep and when you can smoke
cigarettes and there was no privacy. I didn't worry about those
things, but my life in there was spent in a small room, and
shared with a stranger, and I wanted to get out because it was
better to leave there. I had physical therapy to build my legs
up, and am able to walk again. However, they stopped giving me
the therapy I needed to walk. They stopped giving me services
that I needed to walk and to stay able to walk. Then I was
always afraid to walk a short distance. I slipped and fell on
the wooden floors. The towels were dirty, and being in the
nursing home was disturbing.
In October 2009 I was able to leave the nursing home going
into my own apartment. Again, since living at home, I'm able to
continue my therapy level and am building my legs up and can
one day return to work, which is my biggest goal, and go out to
dinner and to my friends' home, and go to picnics.
At the nursing home I felt like I was locked in. I walked
around in the nursing home--it was like a cage, you know,
living there. It was just a bunch of older people. It wasn't
for me. That's what I was trying to say. The place was not for
me. It was just older people and I was younger. I'm only 49.
There were older people there, and I finally got out.
That's all. Thank you.
[The prepared statement of Mr. Knight follows:]
Prepared Statement of Jeffrey Knight
Good Afternoon Senator Harkin, Ranking Member Enzi, and members of
the committee. I am Jeffrey Knight. I am a participant of a 1915(c),
Home and Community-Based Medicaid waiver and the Money Follows the
Person Rebalancing Initiative.
I appreciate this opportunity to discuss my experiences living in a
nursing facility and how much it means to me to be given the
opportunity to return to the community and live in my own home again.
Without Maryland's Money Follows the Person program and the new Money
Follows the Person program, I would have never had the opportunity to
live in my own home again.
First, let me tell you a little history of Maryland's programs.
House bill 752 enacted during the 2002 legislative session, requires
social workers in nursing homes to present residents with information
about home and community-based services that might help them live in
the community. In the 2003 legislative session, lawmakers enacted House
bill 478, the Money Follows the Individual Act. The act allowed
individuals living in nursing facilities to access a 1915(c) waiver,
Medicaid home and community-based waivers known as the Older Adults
waiver and the Living at Home waiver. The Older Adults waiver was
designed to provide Medicaid plus home and community-based services for
individuals age 50 and older. It also includes transitional services
such as the first month's rent, electricity, phone, furniture,
household supplies, food, etc. for the first month. The financial
eligibility requirements allow individuals who were 300 percent of
Supplemental Security Income level to access the program. The Living at
Home waiver is similar but it is for individuals age 21 through 65.
Until 2003, anyone could apply for a waiver whether they were in a
nursing home or living in the community, but there was a waiting list.
In 2003, both of the waiver programs were closed to community
applicants because there weren't any slots available. Maryland began a
registry for community applicants. The Money Follows the Person Act
made it possible for anyone who resided in a nursing facility to
receive a waiver without being on a waiting list or the registry.
Currently, the registry has 15,000-plus persons on the list waiting for
waivers. There is no such list for nursing home residents.
Unfortunately, the only way to get a waiver is to live in a facility
and be on long term Medicaid for 30 days. The law prohibits the
Department of Health and Mental Hygiene from denying an individual
access to HCBS waiver services due to a lack of funding for the
program.
Maryland is 1 of 31 states receiving Federal funds from the Centers
for Medicare and Medicaid for the Money Follows the Person
Demonstration program as a result of the Deficit Reduction Act of 2005.
Maryland has developed a Money Follows the Person Demonstration program
to re-balance its long-term care costs from institutional care to home
and community-based services so the money will follow the person into
the community. I am a beneficiary of that effort.
I am 49 years of age. I was born and raised in Front Royal, VA. I
graduated from Warrenton High School. After graduating, I moved to
Frederick, MD. I have lived in Frederick County for 31 years. I worked
at Fort Detrick as a custodian for 11 years. I was born with
developmental disabilities, Epilepsy and learning disabilities. I have
lived on my own and supported myself since I was 18 years of age.
Two years ago, I entered the hospital because of seizures. As a
result, I was placed in a nursing facility for 24/7 care because of my
inability to walk. My healthcare providers did not feel because of my
disability I was able to care for myself. I lived at Citizens Nursing
Home, a county-owned facility. Citizens Nursing facility is no
different from other nursing homes. I had a horrible experience living
there. It was depressing being in a place that was mostly older people.
I had no one to talk to that I could relate with. I didn't like how I
was cared for or how others were cared for. They treated me like a
baby. They told me when to eat, sleep, and smoke. I had no time that
was private or could be on my own. The small space given to me as a
bedroom was small and confining. It was more like a hospital room. You
have to share it with someone else. You didn't have your own things.
There was no privacy, people in and out of your room, all day and all
night. Your personal belongings are not safe. Things like electronics,
food, and money are stolen. You hear residents screaming all night
long. You have to eat what they prepared for you, not what you wanted
to eat. I will never eat chicken again for as long as I live. Just to
have a hot dog or a hamburger again was a dream come true. It was not
clean. The floors and bathrooms had urine all over them. They didn't
give you the therapy to get better. I just sat and stagnated, day after
day. I had reached my limit and felt that I had to get away from there.
I could not take living there any longer. I was totally disgusted with
institutional life. So, I contacted the Maryland Disability Law Center
(MDLC), the local protection and advocacy organization to find out what
my options were. I wanted to go home. They worked with me by advocating
getting the Living at Home waiver. The Freedom Center also worked with
me to help me gain my freedom back.
In October 2009, I was finally able to leave. Between MDLC and The
Freedom Center, my apartment was found and my services were put in
place. The Living at Home waiver vendor, The Coordinating Center,
helped me develop a plan of service which cost $48,229.88 for 6 months.
This included 16 hours of care for the first 3 months and 12 hours of
care for 3 more months. After 6 months, I was able to get the waiver
for a year at a time because my attendant care was reduced to 8 hours
per day. I don't need as much care now. The cost of my plan of services
now is $25,094.44. It is much more cost-effective living in my own
apartment and that cost is going down allowing Maryland to save even
more dollars as a result of the Money Follows the Person Demonstration
program. Because of the Medicaid waiver program and Money Follows the
Person, I have my own privacy and freedom to come and go as I please I
am not locked down like I am in a cage. I get to eat what I want to
eat. That first hot dog was the best meal I had ever had. I can eat
what I want and when I want to. I am now able to get rehabilitation so
I can build my legs up to be able to walk again. I came out of a
nursing home using a wheelchair and now, most of the time, I can use
just my walker. It is my hope to be able to walk without assistance. My
No. 1 goal is to be able to go back to work part time. I can take my
medication on my own. I don't have to wait until someone brings it to
me. I can visit friends in their homes for the holidays. I can watch TV
when I want to. I can watch whatever I want on TV. I really love
watching movies either in my bedroom or in my living room. I am able to
attend social functions such as picnics and holiday parties. I am, for
the last 8 months, enjoying my freedom and being able to control my
life in the way I want to. I am at peace. I am becoming a self-advocate
and have shown my support by my opposition to Transit budget cuts which
would have affected my paratransit services. I will never go back to a
nursing home. I will disappear if someone tries to put me back in a
nursing home. I am so strong in wanting to live in the community that
it was very hard for me while I waited for everything to be put in
place so I could leave. I almost left the nursing home against medical
advice. I was ready to leave with or without a waiver. I didn't because
I didn't want to jeopardize what I needed in services. My life now is
what I want it to be. I am happy and I get much better care than I ever
did while in the nursing home. My meals are delicious. And, my
apartment is clean. I cannot ever imagine being back in a nursing
facility. I am relaxing and enjoying life.
Thank you for allowing me to share my experiences with you and I
hope that what I have said will help keep these valuable programs in
place and allow others to leave nursing homes and gain their freedom as
I have.
The Chairman. Thank you, Mr. Knight. Thanks for being here
and thanks for telling us your story, and your leadership.
You're a great example for others.
Mr. Knight. You're welcome.
The Chairman. A great example.
Mr. Knight. I think they rebuilt it, but the place should
be looked at, because when I was there, I mean, for 2 years--at
3 a.m., there were patients in the middle of the hallway laying
in their own urine. And the shower was filthy. That's in
Maryland, but they've rebuilt it now. So hopefully it's a lot
better place.
The Chairman. No one should be treated like that, no one.
Mr. Knight. No, I know. Thank you.
The Chairman. Thanks, Mr. Knight.
Ms. Thaler.
STATEMENT OF NANCY THALER, EXECUTIVE DIRECTOR,
NATIONAL ASSOCIATION OF STATE DIRECTORS OF DEVELOPMENTAL
DISABILITIES SERVICES (NASDDDS)
Ms. Thaler. Chairman Harkin, Ranking Member Enzi, and
members of the committee, thank you for the opportunity to
appear today to talk about the successes and challenges that
we've experienced, the States have experienced, in providing
community opportunities for individuals with developmental
disabilities.
Mr. Perez talked about States having varying experiences
depending on the category of people with disabilities. I'm here
to talk about people with developmental disabilities, which
includes a wide array of disabilities, including autism,
Fragile X, and intellectual disabilities. But what people have
in common is that they acquire their disability either at birth
or in their early childhood years. So their families have been
engaged in their disability issues as well.
I'm the Executive Director of the National Association of
State Directors of Developmental Disabilities Services. I've
been in the field for 40 years in nonprofit agencies and in
State and Federal Government. I was for 10 years the Director
of the Developmental Disabilities System in Pennsylvania and
later worked at CMS, helping them to devise protocols for
Federal oversight of home and community-based services.
I also should mention I'm the mom of a 45-year-old son,
Aaron, who has developmental disabilities and whom my husband
and I liberated from an institution through adoption.
The mission of NASDDDS is to help States develop effective
systems for people and their families. We do provide analysis
of Federal statutes and regulations. We disseminate information
on state-of-the art programs. We provide a great deal of
technical assistance to our States, including about
transferring people from institutions to the community. We are
also a forum for the development of State and national policy
initiatives.
The States have made dramatic progress in moving from
institutions to communities for people with developmental
disabilities. The indicators of that progress are: the
institutional population has dropped from a high of a quarter
of a million people in 1967 to less than 36,000 people today.
Of the $43 billion of State and Federal funds that are invested
in the DD system, almost 70 percent is invested in community
services. Today there are 10 States and the District of
Columbia that have no public institutions and another 12 States
with less than 200 people in institutions. We are definitely
far down the path of moving toward the community.
How has this success been possible or what have been the
drivers of this success? There are about nine of them. First
are the parents and advocates who initially in the 1970s
outraged about conditions in institutions, fought to reform
them and then close them. They later fought then for the right
to education, which was adopted in 1975, which has made it
possible for all children to go to public school every day. We
saw then a precipitous decline in the admissions of children to
institutions.
Private nonprofit agencies, fueled with the energy of newly
graduated baby boomers in the 1970s, came forward with great
creativity to create a wide array of community services. The
Department of Justice and the protection and advocacy agencies
in States have filed actions to enforce the rights of people
with disabilities and they have leveraged change as well.
Medicaid funding and Federal statutes, in particular the
Medicaid waiver and Money Follows the Person, have been
critical. In fact, transformation of the system toward
community services would not have been possible without them.
The expectations of a new generation of families who expect
that their children--who have been going to public school--are
going to live their entire lives in the community, are leading
to new challenges. People want to control their own budgets and
make their own decisions about the services they get.
Another factor driving change has been the cost of
institutional services, which has become burdensome, at an
average cost of $188,000 a year per person as compared to about
$43,000 for home and community-based services.
Another key factor has been that the States have authority
to close institutional beds and institutions because they own
them and they run them. They do not have that same authority
over privately operated institutions or nursing homes. In order
to achieve savings, it is necessary to close beds and move the
resources to the community.
Finally, people with developmental disabilities
themselves--and Mr. Knight is a great example of that--
opportunities to live in the community and work in the
community have brought abilities to life. Individuals with
developmental disabilities have developed a strong collective
voice through self-advocacy and they now speak for themselves
very articulately.
There are remaining challenges. One of the largest is the
restricted availability of State funding, which has been and
continues to be a barrier to developing community services.
While States have embraced the Medicaid waiver, they are still
dependent on the availability of State funds to expand
services. We certainly would want to express our appreciation
for the enhanced Federal financial participation through the
ARRA (American Recovery and Reinvestment Act of 2009)
legislation, which has, in fact, saved a lot of people by
retaining their services.
Another obstacle to continuing the move toward community
and moving people out of institutions is certainly opposition
from State institution employees, which is not surprising since
they have reasonable fears that they will be unable to maintain
employment at the same wages and benefits if the institution
closes. This challenge is addressed State by State, almost
institution by institution.
Opposition from families of those living in institutions is
probably the most complex of our challenges. When fears of
abuse and neglect and poor quality in community services are
addressed adequately, families may still object and feel that
their decision should be final.
It would be an easy path to let the issue go for the 36,000
people remaining in institutions, avoiding having to ask
families to reconsider a decision they made perhaps 30 or 50
years ago. However, knowing what is possible, knowing how much
people improve significantly when they move from the
institution to the community, knowing that families
overwhelmingly approve of community services once their family
member moves, professionals and State agencies cannot just let
it go. They are compelled to keep the question open.
Another challenge for States is the waiting lists, which
can be characterized as also preventing institutionalization.
Almost all States have them and in too many places the death of
a caregiver or some crisis is the only way to move to the top
of the waiting list. The limited data we have suggests that
there are thousands of people waiting. The shortage of State
funds restricts growth of community services, a shortage that
has become even more severe in the current economic climate.
Then we have the choice paradox. The statutory basis for
community services is the right to receive services in an
institution. When individuals apply for community services,
they must formally opt-out of the institution and affirmatively
choose the community. We call this choice. However, we know
from the work of Richard Thaler and Cass Sunstein, authors of
``Nudge,'' that when we present individuals with a choice, the
decision process can be structured in a way that will influence
their choice.
For instance an opt-out decision process is generally
recommended for the administration of retirement programs
because it results in more people enrolling in retirement
programs because they choose not to opt-out. So what is the
message in requiring individuals to opt-out of institutional
services in order to receive home and community-based services?
The message is a mixed one, because it promotes institutions
even for those who desire the community. More than one State DD
director has identified this quirk in the Medicaid program as
problematic.
Finally, I'd like to say that the goal of the DD system is
about a lot more than just providing services in the community.
It is about achieving the full participation of people in the
life of their community. A real job at competitive wages,
membership in civic organizations, knowing their neighbors, and
having friends are the real measures of success.
The last thing I'd like to talk about are the apologies
that we have seen from States. Recently the State of Minnesota
became the sixth State in the Nation to issue a formal apology
to people with developmental disabilities for the years of
incarceration, abuse, and neglect in State-operated
institutions. Those other States are Virginia, Oregon,
California, South Carolina, and North Carolina.
Such an apology is an indication of a sea change in
attitudes. States are apologizing to a group of people who in
recent history were stripped of all their rights, who were
denied an education and often medical treatment, who have been
sterilized without consent, and were presumed to have nothing
to offer society. These apologies, coupled with the almost
complete abandonment of the term ``mental retardation'' from
the names of State agencies, are indications that our public
systems are about more than providing services; they are about
respecting the rights and dignity of people with developmental
disabilities and creating opportunities for full participation.
Change has reached all 50 States and the District of
Columbia. They are all progressing, each at a different pace,
but they are all making progress toward comprehensive systems
of community supports and services.
Thank you.
[The prepared statement of Ms. Thaler follows:]
Prepared Statement of Nancy Thaler
Chairman Harkin, Ranking Member Enzi, members of the committee,
thank you for the opportunity to appear today to discuss the successes
and challenges States have experienced in providing community
opportunities for individuals with developmental disabilities.
I am the Executive Director of the National Association of State
Directors of Developmental Disabilities Services (NASDDDS). I began my
career in 1971 working in nonprofit agencies developing community
services for children and adults with developmental disabilities. Six
years after joining Pennsylvania State government, I was appointed the
State's Deputy Secretary for Mental Retardation where, from 1993 to
2003, I managed a system of institutional and community services for
over 80,000 individuals. During my tenure as the State director there
was significant expansion of community services for Pennsylvanians with
disabilities who were on the waiting list for community services,
including those living in institutions. During that time, over 2,000
people in intuitions were provided with the opportunity for community
living, reducing the institutional population by more than 55 percent.
From 2003-2005, I served as the Director of Quality Improvement for the
U.S. Department of Health and Human Services' Centers for Medicare and
Medicaid Services (CMS), Disabled and Elderly Health Programs Group,
and was responsible for developing Federal oversight of State-operated
Medicaid Home and Community-Based Services Waiver programs. My husband
and I are adoptive parents of an adult son with developmental
disabilities who spent much of his childhood in an institution and now
lives and works in the community.
The National Association of State Directors of Developmental
Disabilities Services provides an array of services to developmental
disability (DD) agencies in the 50 States and the District of Columbia.
The NASDDDS mission is to assist member State agencies in building
effective, efficient person-centered systems of services and supports
for people with developmental disabilities and their families. NASDDDS
strives to provide member State agencies with timely analyses of
Federal statutory and regulatory policies that affect people with
disabilities; to disseminate information on state-of-the-art programs
and service delivery practices; to supply technical assistance and
support to member States; and to offer a forum for the development of
State and national policy initiatives.
PROGRESS IN ENSURING COMMUNITY OPPORTUNITIES FOR INDIVIDUALS
WITH DISABILITIES
In 1967, the number of people with what was then called mental
retardation living in large State institutions reached its high point,
with 228,500 in large State intellectual/developmental disability (I/
DD) institutions and 33,850 in psychiatric institutions. Much has
changed since 1967. The most recent national data from 2008 indicates
that there were 36,508 in State I/DD institutions--a drop of 194,650
people (84 percent) since 1967; and 767 in psychiatric institutions, a
drop of 33,083 people (98 percent).\1\
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\1\ Residential Services for Persons with Developmental
Disabilities: Status and Trends Through 2007 Lakin, K.C., Larson, S.A.,
Salmi, P. & Scott, N.
---------------------------------------------------------------------------
Between 1967 and the mid-1980s, 5,000 to 10,000 people moved back
into the community each year.\2\ The civil rights movement that swept
the country reached all elements of society, including people living in
institutions. Many individuals who learned that they had a right to
leave the institution, and had the capacity to do so without special
assistance, simply left. The individuals who remained in institutions
in the mid-1980s by and large could not leave to live in the community
without special assistance.
---------------------------------------------------------------------------
\2\ Residential Services for Persons with Developmental
Disabilities: Status and Trends Through 2007 Lakin, K.C., Larson, S.A.,
Salmi, P. & Scott, N.
---------------------------------------------------------------------------
In 1982 the adoption of the Medicaid Home and Community-Based
Services (HCBS) Waiver made that assistance available. Allowing funds
that were previously reserved for institutional services to be used for
community services enabled State DD departments to build systems of
community services that initially supported people leaving institutions
and soon expanded to those at risk of institutionalization. For the
next two decades, the institutional census continued to drop annually
by 4,000 to 5,000 people.
Today, 10 States and the District of Columbia have no institutions
for people with developmental disabilities; and 12 States have less
than 200 people still living in institutions--Michigan with less than 5
and Minnesota with less than 25. A recent survey conducted by our
association found that 67 percent of the States with institutions have
plans to downsize or close facilities in the next few years.
By 2006, all but one State was spending more for community services
than for institutional services. And, of the approximately 1 million
people receiving services, less than 3.6 percent reside in
institutions. By 2008, 66 percent of the $43.83 billion of State and
Federal funds that support people with I/DD were committed to community
services.\3\
---------------------------------------------------------------------------
\3\ The State of the States in Developmental Disabilities 2008
Braddock, Hemp, Rizzolo Coleman Institute for Cognitive Disabilities,
The University of Colorado.
---------------------------------------------------------------------------
Why has there been such an overwhelming trend toward community
services in the developmental disabilities services systems? There are
many reasons and there have been many drivers.
KEY FACTORS DRIVING THE DEVELOPMENT OF COMMUNITY SERVICES
First and Foremost is the Parent/Advocacy Movement. Outrage at
horrific conditions in public institutions in the 1960s and the lack of
services for children and adults living with their families in the
community fueled simultaneous efforts at: reforming public
institutions; establishing a right to education; and creating services
for adults living with their families. The thinking quickly evolved--
reforming institutions, while important in the short run, was not the
final goal. Offering everyone a life in the community became a focus of
the advocacy agenda.
By the early 1970s, parents and advocates were experiencing
success. Several institutional law suits had been filed resulting in
improvements in the institutions as well as expanded opportunities for
people to move to the community. Advocacy efforts to achieve the right
to education resulted in landmark legislation first in the States, and
then at the national level with the adoption of the Education for All
Handicapped Children Act (Public Law 94-142) in 1975.
The right to education profoundly changed the experiences of
children with developmental disabilities and the expectations of
parents. Prior to the right to education, parents had two choices: to
institutionalize their children--something routinely recommended by
medical professionals--or to keep their child at home 24 hours-a-day
without support or training. Many parents chose to keep their children
at home rather than follow the advice of their doctor. But as their
children grew, so too did the stress of being an unsupported care
giver. When parents came looking for help, all that States had to offer
was the institution. So with grief and often guilt, parents sought
admission for their children.
The right to education changed things. When schools opened their
doors, admission of children to institutions dropped significantly--and
the expectations of families rose just as quickly. If children could
live with their families and go to school, then why wouldn't they live
their entire life in the community?
Private nonprofit agencies found in the baby boomers they hired in
the 1970s and 1980s people who were ready and eager to develop
community services. Founded by families, faith-based organizations, and
community groups, these nonprofits turned a vision into a reality for
thousands of people with disabilities. Opening group homes, vocational
training programs, and recreational programs they championed the cause
of people with intellectual and developmental disabilities and helped
them become part of the community.
And as they did so, they built more and more evidence that
community living was, in fact, better for people who were once believed
to need institutions. It was better for the person--and also better for
their families who could now see them more frequently because the group
homes were in the family's community rather than far away in a remote
part of the State.
The Department of Justice and Protection and Advocacy also played a
significant role in the shift from institutions to the community. Using
the Civil Rights of Institutionalized Persons Act, the Department of
Justice conducted investigations and litigation to press for
improvements in facilities with the most egregious rights violations.
Protection and Advocacy organizations, often contacted by families of
those living in institutions, conducted investigations, and initiated
litigation when conditions did not improve.
The result of these interventions was increased investment in the
institutions to improve conditions, along with agreements to decrease
the number of people in the institutions--and in many cases agreements
to simply close facilities.
Adoption of the Americans with Disabilities Act (ADA), reinforced
by the Olmstead decision, provided additional tools for organizations
to advocate for community services, and it solidified the right of
people to live in the community. The ADA and Olmstead are landmark
statutes that have validated the values of the DD systems in this
country.
Medicaid Funding and Federal Statutes. Statutes, regulations,
funding, and technical assistance all play an important role in
assisting States to make community opportunities available for people
in institutions and on waiting lists.
The Developmental Disabilities Act, the Americans with Disability
Act, the Individuals with Disability Education Act, amendments to Title
XIX of the Social Security Act, and so many other statutes have opened
doors and served as vehicles for States to provide services in the
community. Most recently new Medicaid State plan options and Money
Follows the Person grants have provided States with even more tools.
New Medicaid options have enabled States to expand services. While
many States already had programs providing community services to
individuals with developmental disabilities, usually called ``family
supports,'' the advent in 1982 of the 1915(c) Home and Community-Based
Services (HCBS) Medicaid waiver program meant the availability of
Federal funds to support individuals in the community--and this drove
rapid expansion of such programs. Allowing States to waive
comparability (i.e., target specific populations) and to include a
diverse set of non-medical supports and services in their 1915(c)
programs gave them the opportunity to innovate and to build systems of
support around the specific needs of individuals. Paradoxically,
allowing States to cap the number of waiver participants has played a
key role in the robust growth of the program, as States have been able
to expand their community infrastructure, develop a broad array of
services and the capacity to provide them, and build expertise in
serving individuals with developmental disabilities in the community,
while retaining the tools they need to manage financial risk and ensure
the survival of HCBS programs. Because of this freedom to innovate,
States have become experts at serving individuals in the community who
not long ago would have been considered impossible to serve outside of
an institution.
Money Follows the Person (MFP) grants are assisting 27 of the 30
grant States to move people with developmental disabilities out of
institutions and into the community. The grants are directly focused on
a key barrier States have faced to re-balancing their systems of long-
term supports and services. While we know that serving individuals in
the community rather than in institutions is ultimately more cost-
effective, the up-front transition costs involved in moving individuals
into the community can often act as a deterrent to State efforts. The
CMS implementation of MFP focused on effective transition procedures
and used, as one measure of success, the rate of return to facilities.
The increased appropriation in the Patient Protection and Affordable
Care Act (PPACA) will allow more States, and more individuals currently
residing in institutions, to benefit from this valuable program.
The recent addition of the 1915(i) State plan option for HCBS, the
Community First Choice Option, and enhanced Federal Financial
Participation (FFP) for those States whose investment in community
services is less than 50 percent are all examples of recent Federal
initiatives aimed at giving States more opportunities to provide
services to individuals in community settings.
The Centers for Medicare and Medicaid Services (CMS) has partnered
with State agencies to explore ways in which CMS can assist States in
advancing community services. The willingness of CMS leadership to meet
regularly with the national associations representing various State
agencies and to fund technical assistance to States is particularly
noteworthy.
A new generation of families with young children who have benefited
from early intervention services, public education, medical and
clinical advances, and more importantly, have raised their children in
a world that is more accepting of people with disabilities, a world
that sees the value in diversity, a world that can recognize the gifts
that each person brings. They are demanding even more change.
Families of young children not only reject institutions, they also
reject community models that segregate or isolate their sons and
daughters from typical life. They expect their sons and daughters to
graduate from school, to get a job, to have meaningful relationships
and to participate in the life of their community.
The cost of institutional services has also been a factor in the
transition from the institution to community services. While the cost
of providing services to each individual differs as systems respond to
individual needs, in the aggregate, it is far more cost-effective to
customize support that builds on each individual's strengths and the
natural supports they have in their family and community, than to
create a residential model that provides comprehensive services whether
an individual needs them or not. In addition, investment in models of
service that do not provide an environment where people grow and
achieve positive outcomes is questionable public policy.
Cost is a factor because people with developmental disabilities do
not enjoy an entitlement to services. Resources used inefficiently add
numbers to the waiting list. The meager data on waiting lists indicates
that over 100,000 people are waiting to be served.
State Authority. The effectiveness with which States have
transferred funds from the institutional system to the community is
directly related to the fact that States own and operate the
institutional facilities and have full authority to determine the
number of certified beds and the disposition of resources. However,
privately operated ICFs/MR and nursing homes, however, present a
challenge to re-balancing the system because States do not have the
authority to close beds other than in situations where the facilities
or the providers do not meet certification standards.
And most importantly, people with intellectual and developmental
disabilities themselves have driven the change. An outgrowth of the
movement of people from institutions to the community has been the
growth of self-advocacy; i.e., people finding their voice and
advocating for themselves. Self-advocates have survived indignities and
often abuse in institutions and have demonstrated a level of courage,
fortitude, and forgiveness that inspires everyone who hears their
stories.
CHALLENGES REMAIN
The barriers to creating community opportunities for people who
remain in the institutions are the same barriers that have been with
States since the 1980s.
The Availability of State Funding has been and Continues to be a
Barrier. While the Medicaid Home and Community-Based Services Waiver
program provides significant Federal funding for services, it does so
only on a matching basis--which requires States to fund up to 50
percent of the cost of services, depending on each State's matching
rate. The scope of programs competing for resources within each State's
budget include education, transportation, and law enforcement, coupled
with a constitutional requirement to balance annual budgets that
affects the growth rate of Home and Community-Based Services. The
current fiscal crisis, which has meant precipitous drops in State
revenue, has recently compounded the problem. States have embraced the
Medicaid Waiver program because it provides them with tools to manage
growth within the confines of the State's economic conditions. During
times of economic gains, States will typically expand their waiver
programs. Conversely, during times of economic distress, they will
curtail growth.
Opposition from employees has been a factor in downsizing and
closing of institutions. An institution may be the primary employer in
a geographical area. In fact, some were established in rural areas many
years ago precisely for the purpose of providing employment. Employees
often enjoy robust wages and benefits that are difficult to replicate
in other fields or in the private sector. It should come as no surprise
that employees often oppose the downsizing and closure of facilities
and that their opposition includes solicitations of support from
legislators in their districts. Strategies used by States to overcome
this barrier, such as guaranteeing employment in other State operations
or in-State-operated community services, are not always feasible. Each
facility closure has been accomplished by employing multiple strategies
crafted uniquely for that particular facility.
Opposition from families is another challenge--and the most complex
one. What we know from 40 years of experience is that people do better
in the community than in institutions. No matter their age, they learn
new skills, develop new competencies and appear to be much happier. We
know this from research which has established that all individuals make
gains but those with the most significant disabilities make the most
gains after moving to small community residences.\4\ But just as
importantly, the thousands of provider staff, clinicians, and leaders
in our field know this--because they have witnessed it.
---------------------------------------------------------------------------
\4\ Bradley, V.J., & Conroy, J.W. The Pennhurst Longitudinal Study
Executive Summary Philadelphia: Temple University Developmental
Disabilities Center, 1985.
---------------------------------------------------------------------------
We know that, regardless of the intensity of the opposition from
families, once the person moves to the community the opposition melts
and the family sees the benefits of community living. In fact, rarely
has any family member requested the return of their son, daughter,
sister or brother to the institution.
Opposition can be based on any number of assumptions. One is that
the services in the community will be discontinued over time, leaving
the family entirely responsible for providing both support and living
arrangements. The fact that the Medicaid Waiver is funded with
precisely the same funding sources as the institution--and that most
community service systems are now over 50 years old--can assuage some
of those fears.
Opposition based on the assumption that their family member can't
live in the community can be addressed by taking families to visit
community services that support people with the same level of needs as
their family member. Arranging meetings for family members with people
living in the community can also help to address those fears. In the
past it has been said that for every person living in an institution,
there is one in the community. Today it would not be an exaggeration to
say that for every person living in an institution, there are thousands
living in the community.
Opposition based on fear of abuse and neglect requires a frank
discussion that acknowledges that abuse and neglect have been serious
problems in institutions and can be an equally serious problem in the
community. States must explain the processes they have built into
community systems to prevent abuse and neglect, to detect it as soon as
it occurs, to inform family members and to respond promptly.
The institution is often perceived as better able to provide
intense and specialized services. It is important to educate families
about the impact of environment and experience on learning and that,
while the institution may have specialists, the environment and the
routines of the institution lack the real life experiences of daily
living. Activities as simple as buying weekly groceries and making
meals, going to the bank or post office, taking in a movie, or greeting
neighbors are the experiences through which people develop competencies
and social skills. The availability of medical services may also be a
concern, and can be addressed by involving families in establishing a
relationship with medical professionals in the community prior to their
family member leaving the facility.
The absence of oversight to assure quality is often incorrectly
identified as a weakness in the community system. What is often not
recognized is the considerable attention the Centers for Medicare and
Medicaid Services and the States have placed on quality assurance. The
application States must complete to obtain approval to operate a Home
and Community-Based Services Waiver requires States to provide detailed
descriptions of provider qualifications, oversight functions, and
quality management practices. States are then required to report the
findings from their oversight activities on an annual basis and
approval to continue to operate a Medicaid Waiver is contingent upon
assuring CMS of the health and safety of waiver participants.
Last, there are those who say that families should have absolute
authority to make any decisions that affect their family member, and
that any government participation constitutes interference with the
family relationship. The central question that should be the primary
focus of both family members and State professionals and the basis for
any decisionmaking is ``what would benefit the person most?'' And, it
is this question that drives State agency professionals to continue to
create community service opportunities for people living in
institutions. Having assisted hundreds of people to move from
institutions to the community, having witnessed their growth and
development and the satisfaction that families inevitably experience,
professionals are bound by professional ethics and compelled by their
personal commitment to pursue community options for people living in
institutions.
It would be a far easier path to simply let the issue go for the
36,000 people still living in institutions, to avoid asking families to
reopen the decision they made to institutionalize their family member
30 or even 50 years ago. But knowing what is possible and what is
right, professionals working in State agencies cannot do that.
There is another compelling reason for public officials to stay the
course of reducing the number of people in institutions: the need to
manage public resources, to manage long-term care systems, in as cost-
effective a manner as possible. Large facilities are generally the most
costly service model in State systems. States that have significantly
reduced the number of people in facilities have made more progress in
expanding services for people in the community. Savings from reducing
or eliminating the use of the most expensive model of care are an
important resource for those on the waiting list.
While opposition can be intense, there are also many stories of
family groups working hand-in-hand with States to close institutions
and participating actively in the development of community services.
The State of Wyoming is a model of what may be one of the best closure
processes in the country, and won the NASDDDS Censoni award for
outstanding achievement in public services. As is so often true, the
story begins with litigation. But the path Wyoming took to respond to
that litigation was not to oppose the plaintiffs and argue the case out
in court for 10 years, but instead to seize the opportunity to build a
robust community service system where there had been none, to serve not
only the people from the Wyoming State Training School but also people
who were already living in the community with their families and were
at risk of institutionalization. Wyoming was among the first States to
demonstrate that the thoughtful development of a community system with
a wide-range of services eliminates the need for an institution.
Preventing Institutionalization: The Waiting List Challenge. There
is no entitlement to Home and Community-Based Services and States are
restricted in their capacity to expand services. Therefore waiting
lists are a reality in most State developmental disability systems.
Advocacy efforts, law suits, a booming economy, and funds available
from the closure of institutions have allowed many States to expand
services for people on the waiting list over the past two decades. But
few States have achieved enough growth that important services can be
made available promptly to every eligible applicant upon request.
Emergencies and crises become the entry point into Home and Community-
Based Services systems for many. There is no reliable national data on
the number of people waiting for services but we know that in many
States the number is in the thousands and the wait can be as long as 10
years. Many States do not maintain a count of people on the waiting
list for fear of creating expectations they cannot meet.
The barrier to meeting the needs of people on the waiting list are
purely financial. The inability to provide State funds to earn Federal
matching dollars controls the pace of growth.
The Choice Paradox. The statutory basis for community services is
the right to receive services in an institution--an Interim Care
Facility for the Mentally Retarded (ICF/MR). When individuals apply for
community services, they must first formally ``opt-out'' of receiving
services in an institution and affirmatively choose Home and Community-
Based Services. This is called choice. However, we know from the work
of Richard H. Thaler and Professor Cass R. Sunstein, authors of Nudge,
that in presenting individuals with choice, the decision process can be
structured in a way that will ``influence people's behavior in order to
make their lives longer, healthier and better.'' For instance, an
``opt-out'' decision process is often recommended for the
administration of employee retirement programs because it results in
more people enrolling in a retirement program which will presumably
make their life better when they reach retirement age.
What is the message in requiring individuals to opt-out of
institutional services in order to receive Home and Community-Based
Services? The message is a mixed one because it promotes the
institution even for those who desire and are requesting services in
the community. More than one State Developmental Disability Director
has identified this ``quirk'' in the Medicaid program as problematic
when promoting Home and Community-Based Services.
THE GOAL OF FULL INCLUSION IN COMMUNITY LIFE THROUGH THE DELIVERY
OF HIGH QUALITY SERVICES
Creating community opportunities is only a beginning. The goal of
our DD services systems is the full participation of people in the life
of their community. A real job at competitive wages, membership in
civic organizations, knowing the neighbors, and having friends are the
real measures of our success.
Services must be designed to do more than maintain people in the
community. They must be of high-quality and designed to achieve real
life outcomes. People working in developmental disability systems
across this country have pioneered strategies to assist people with
disabilities to achieve a life of full inclusion and participation in
their communities. Individualized planning, supported employment, self-
determination, positive behavioral practices, and more recently person-
centered planning, individualized budgeting, and consumer-directed
services have been adopted by support infrastructures for other
populations, including mental health and aging systems.
Measuring quality has been a long standing priority for States. In
1997, NASDDDS launched the National Core Indicators Program (NCI) in
partnership with the Human Services Research Institute (HSRI). NCI is a
set of system performance indicators organized into domains such as
Health, Welfare, and Rights which measure the performance of each State
and makes benchmarking between and among States possible.
APOLOGIES
Recently the State of Minnesota became the sixth State in the
Nation to issue an apology to people with developmental disabilities
for the years of incarceration, abuse, and neglect in State-operated
institutions. Such an apology is an indication of a sea change in
attitudes. States are apologizing to a group of people who in very
recent history were stripped of all rights as citizens, who were denied
an education and often medical treatment, who were sterilized without
consent and were presumed to have nothing to offer society. These
apologies, coupled with the almost complete abandonment of the term
``mental retardation'' from the names of State agencies are indications
that our public systems are about more than providing services; they
are about respecting the rights and dignity of people with
developmental disabilities and creating opportunities for full
participation in community life.
Change has reached all 50 States and the District of Columbia. They
are all progressing--each at a different pace--but they are all making
progress toward comprehensive systems of community supports and
services.
The Chairman. Thank you very much, Ms. Thaler.
Now we'll wind up with Mr. Buckland. Kelly, welcome. Please
proceed.
STATEMENT OF KELLY BUCKLAND, EXECUTIVE DIRECTOR, NATIONAL
COUNCIL ON INDEPENDENT LIVING
Mr. Buckland. Thank you, Senator. It's good to see you
again. Mr. Chairman, Ranking Member Enzi and distinguished
members of the committee, good afternoon and thank you for the
opportunity to speak today on behalf of the National Council on
Independent Living. NCIL is the longest running national cross-
disability, grassroots organization run by and for people with
disabilities. Founded in 1982, NCIL represents thousands of
organizations and individuals, including Centers for
Independent Living, Statewide Independent Living Councils,
individuals with disabilities, and other organizations that
advocate for the human and civil rights of people with
disabilities throughout the United States.
Since its inception, NCIL has carried out its mission by
assisting member CILs and SILCs in building their capacity to
promote social change, eliminate disability-based
discrimination, and create opportunities for people with
disabilities to participate in the legislative process to
effect change. NCIL promotes a national advocacy agenda set by
its membership and provides input and testimony on national
disability policy.
NCIL currently works on a wide array of disability rights
issues, including passage of the Community Choice Act, which
will provide many people with disabilities the opportunity to
choose where and how they receive personal assistance services
in their homes and communities.
America is home to 391 centers for independent living, 330
branch offices, and 56 statewide independent living councils.
From 2004 to 2008, centers for independent living moved 11,451
people out of nursing homes and other institutions, saving the
State and Federal Governments over $200 million. This last
year, 2008 to 2009, they moved out an additional 3,000 people.
That makes about 15,000 people they've moved out in that time
period.
Centers also provided the core services of advocacy,
information and referral, peer support, and independent living
skills training to over 3 million individuals with
disabilities; and centers attracted over $618 million through
private, State, local, and other sources annually.
In that same time period, centers for independent living
provided other services to over 659,000 people with
disabilities, including assistance with housing and
transportation, personal assistance, employment, and
technology.
Here are some examples of how NCIL members assist people
with disabilities to live independently in the community.
Access Living in Chicago made 61 home modifications and placed
45 people in housing and transitioned 38 people to the
community. Independent Living Resources of Greater Birmingham
provided 65 home modifications, eliminating barriers to
independence. REACH Resources CILs in Texas transitioned 33
nursing home residents, saving the State and Federal Government
$495,000. In Rochester, the Center for Disability Rights and
the regional CIL transitioned or diverted 65 individuals,
saving New York $4,041,914. Three Rivers Center for Independent
Living in Pennsylvania provided housing services to nearly 400
consumers, reducing homelessness and discrimination. And the
ENDependence Center of Northern Virginia persuaded Fairfax
County to require grantees to ensure ADA compliance.
In recent health care reform legislation, NCIL stated its
priorities in an effort to integrate the needs of the
disability community into the legislation, including language
to end the institutional bias in Medicaid. It was our
unwavering goal to have the language of the CCA in the final
reform bill, and our policy to pursue a compromise only if it
became clear that the CCA would not be part of the reform
legislation.
Over the course of developing the legislation, it became
very clear to us and disability advocates in Washington and
throughout the country that we were not going to get CCA into
the legislation. Therefore we compromised on including the core
principles of CCA into the Community First Choice Act. This was
a major step forward to ending institutional bias and NCIL
wants to thank you, Mr. Chairman, and all the other members of
the committee for your support and hard work to keep it in the
legislation. Now it's our responsibility to convince the States
to adopt that option.
If adopted by the State, the Community First Choice Option
would provide individuals with disabilities who are eligible
for nursing homes and other institutions with options to
receive community-based services. CFC would support the
Olmstead decision by giving people the choice to leave
facilities and institutions for their own homes and
communities. It would also help address State waiting lists for
services by providing access to community-based services. The
option does not allow caps on the number of individuals served,
nor allow waiting lists for these services. Congress provided a
significantly enhanced Federal match, or FMAP, as you talked
about earlier, Mr. Chairman.
NCIL fully supported the Community First Choice Option as
part of the health care reform legislation, but we continue to
stand firmly behind efforts to see that the Community Choice
Act is passed as a stand-alone bill. We realize the limitations
of the CFC, being only an option to States. We also realize
that all 50 State governments are different and our brothers
and sisters in institutions will not be freed in each and every
State.
The CFC will lay down a significant foundation and will
move our Nation closer to equality, but the CFC will leave the
decision to do the right thing up to States, and many States
will fail their constituents.
In fact, NCIL receives reports from centers for independent
living and statewide independent living councils from every
corner of this country that things are not getting better; in
fact, things are getting much more difficult for people with
disabilities to get out of institutions and live in the
community. States are experiencing the worst economic downturn
since the Great Depression and they are being forced to make
some very tough decisions regarding their budgets.
Unfortunately, this has resulted in many of them significantly
cutting their Medicaid budgets. Because of the current
institutional bias in the program, most of them are cutting
services that support people with disabilities in the community
because they believe that they are, ``optional.''
This is why we will continue to push for the Federal
Government to end the institutional bias forever and mandate
the States offer the Medicaid program to allow people their
choice to get their long-term services and support in their own
home or whatever setting they choose. We know that when States
make these types of cuts they violate the Olmstead decision.
However, there has been very little enforcement of Olmstead by
the Federal Government. It is very encouraging to NCIL to see
this Attorney General vigorously going after States that
violate the decision.
The budgets that many States set this past winter will go
into effect in just a few days. NCIL is concerned that when
these budgets go into effect States will be in violation of
Olmstead, and on this anniversary of the decision NCIL calls on
the Federal Government to point these violations out to States
and dedicate the necessary resources to enforcement.
Sadly, NCIL's vision of equality has not yet been fully
realized. Many people with disabilities remain imprisoned in
nursing homes and our civil rights laws have been undermined
and devalued. As a membership organization, NCIL needs the
support of all of our Nation's advocates in order to achieve
our goals and advance the disability rights movement. We hope
the U.S. Senate, the House, and the Administration will join us
in our quest.
Thank you, Mr. Chairman.
[The prepared statement of Mr. Buckland follows:]
Prepared Statement of Kelly Buckland
Mr. Chairman, Ranking Member Enzi, distinguished members of the
committee, good afternoon and thank you for the opportunity to speak
today on behalf of the National Council on Independent Living. NCIL is
the longest-running national cross-disability, grassroots organization
run by and for people with disabilities.
Founded in 1982, NCIL represents thousands of organizations and
individuals including Centers for Independent Living (CILs), Statewide
Independent Living Councils (SILCs), individuals with disabilities, and
other organizations that advocate for the human and civil rights of
people with disabilities throughout the United States.
Since its inception, NCIL has carried out its mission by assisting
member CILs and SILCs in building their capacity to promote social
change, eliminate disability-based discrimination, and create
opportunities for people with disabilities to participate in the
legislative process to affect change. NCIL promotes a national advocacy
agenda set by its membership and provides input and testimony on
national disability policy.
NCIL currently works on a wide array of disability rights issues,
including passage of the Community Choice Act which will provide many
people with disabilities the opportunity to choose where and how they
receive personal assistance services in their homes and communities.
America is home to: 391 Centers for Independent Living; 330 branch
offices; and 56 Statewide Independent Living Councils.
From 2004-2008, Centers for Independent Living moved 11,451 people
out of nursing facilities and other institutions, saving State and
Federal Governments over $200 million;
Centers provided the core services of advocacy, information and
referral, peer support, and independent living skills training to over
3 million individuals with disabilities; and Centers attracted over
$618 million through private, State, local and other sources annually.
In that same period CILs provided other services to over 659,000
people with disabilities, including assistance with housing and
transportation, personal assistants, employment, and technology.
Here are some examples of how NCIL members assist people with
disabilities to live independently in the community.
Access Living of Chicago made 61 home modifications, placed 45
people in housing, and transitioned 38 people to the community.
Independent Living Resources of Greater Birmingham provided 65 home
modifications, eliminating barriers to independence.
REACH Resource CILs in Texas transitioned 33 nursing home
residents, saving the State and Federal Government $495,000.
In Rochester, the Center for Disability Rights and the Regional CIL
transitioned/diverted 65 individuals, saving NY $4,041,914.
Three Rivers CIL in Pennsylvania provided housing services to
nearly 400 consumers, reducing homelessness and discrimination.
The ENDependence Center of northern Virginia persuaded Fairfax
County to require grantees to ensure ADA compliance.
Arizona Bridge to IL received a Community Hero Award from the city
of Phoenix for its Home Modification Program.
In the recent health care reform legislation, NCIL clearly stated
its priorities in an effort to integrate the needs of the disability
community into the legislation, including language to end the
institutional bias in Medicaid. It was our unwavering goal to have the
language of the CCA in the final reform bill, and our policy to pursue
a compromise only if it became very clear that the CCA would not be a
part of the reform legislation. Over the course of developing the
legislation it became very clear to disability advocates in Washington
and throughout the Nation that we would not get CCA into the
legislation. Therefore we compromised on including the core principals
of CCA into the ``Community First Choice Act. This was a major step
forward to ending the institutional bias and NCIL thanks each of you
for your support and hard work to keep it in the legislation. Now it is
our responsibility to convince the States to adopt the option.
If adopted by a State the Community First Choice (CFC) Option would
provide individuals with disabilities who are eligible for nursing
homes and other institutional settings with options to receive
community-based services. CFC would support the Olmstead decision by
giving people the choice to leave facilities and institutions for their
own homes and communities with appropriate, cost-effective services and
supports. It would also help address State waiting lists for services
by providing access to a community-based benefit within Medicaid. The
option does, not allow caps on the number of individuals served, nor
allow waiting lists for these services. A significant enhanced Federal
Medical Assistance Percentages (FMAP) is provided to encourage States
to select this option.
The Community First Choice Option:
Amends Medicaid to allow State Medicaid plan coverage to:
community-based
attendant services and supports for certain Medicaid-eligible
individuals.
Services under this option would include services to
assist individuals with activities of daily living (ADLs), instrumental
activities of daily living (IADLs), and health-related tasks through
hands-on assistance, supervision, or cueing. ADLs include eating,
toileting, grooming, dressing, bathing, and transferring. IADLs include
meal planning and preparation; managing finances; shopping for food,
clothing, and other essential items; performing essential household
chores; communicating by phone and other media; and traveling around
and participating in the community.
Health-related tasks are defined as those tasks that can
be delegated or assigned by licensed health-care professionals under
State law to be performed by an attendant. Services also include
assistance in learning the skills necessary for the individual to
accomplish these tasks him/herself; back-up systems; and voluntary
training on selection and management of attendants. Certain
expenditures would be excluded, including room and board; services
provided under IDEA and the Rehabilitation Act; assistive technology
devices and services; durable medical equipment; and home
modifications.
Services must be provided in a home or community setting
based on a written plan.
Services must be made available statewide and must be
provided in the most integrated setting appropriate for the individual.
Services must be provided regardless of age, disability,
or type of services needed.
States will establish and maintain a comprehensive,
continuous quality assurance system, including development of
requirements for service delivery models; quality assurance to maximize
consumer independence and consumer control; and external monitoring;
along with other critical State and Federal responsibilities/
requirement.
Service delivery models must include consumer-directed,
agency-based, and other models, along with requirements to comply with
all Federal and State labor laws.
States would be required to establish a Development and
Implementation Council to work with the State in developing and
implementing the State plan amendment necessary in order to provide the
services. The majority of Council members must be individuals with
disabilities, elderly individuals, and representatives of such
individual and must collaborate with, among others, providers and
advocates.
States would cooperate in reporting to Congress.
CFC services would not affect the States' ability to
provide such services under other Medicaid provisions.
Provision to collect data regarding number of people
receiving services, dollars spent, and procedures for consumer control.
NCIL fully supported the CFC as part of the healthcare reform
legislation, but we continue to stand firmly behind efforts to see that
the Community Choice Act is passed as a stand-alone bill. We realize
the limitations of the CFC, being only an option to States. We realize
that all 50 State governments are different and our brothers and
sisters in institutions will not be freed in every State.
The CFC will lay down a significant foundation, and will move our
Nation closer to equality, but the CFC will leave the decision to do
the right thing up to States, and many States will fail their
constituents.
In fact, NCIL receives reports from CIL's and Statewide Independent
Living Councils from every corner of this country that things are not
getting better. It is getting much more difficult for people with
disabilities to get out of institutions and live in the community.
States are experiencing the worst economic downturn since the great
depression and they are being forced to make some very tough decisions
regarding their budgets. Unfortunately this has resulted in many of
them significantly cutting their Medicaid budgets. Because of the
current institutional bias in the program, most of them are cutting
services that support people with disabilities in the community because
they believe that they are ``optional.''
This is why we will continue to push for the Federal Government to
mandate that States that offer the Medicaid program allow people the
choice to get their long-term services and supports in their home or
whatever setting they choose.
We know that when States make these types of cuts, they violate the
Olmstead decision, however there has been very little enforcement of
Olmstead by the Federal Government. It is very encouraging to NCIL to
see this Attorney General vigorously going after States that violate
the decision.
The budgets that many States set this past winter will go into
effect in just a few days. NCIL is concerned that when these budgets go
into effect States will be in violation of the Olmstead decision, and
on this anniversary of the decision, NCIL calls on the Federal
Government to point these violations out to States and dedicate the
necessary resources to enforcement.
Sadly, NCIL's vision of equality has not yet been fully realized.
Many people with disabilities remain imprisoned in nursing homes and
our civil rights laws have been undermined and devalued. As a
membership organization, NCIL needs the support of all our Nation's
advocates in order to achieve our goals and advance the Disability
Rights Movement.
We hope the United States Senate, House and Administration will
join us in our quest!
The Chairman. Thank you, Mr. Buckland, and thank all of our
panel for great statements, both the verbal and the written
statements.
I'll start with Mr. Bernstein. Mr. Bernstein, in your
written testimony--and I think you also mentioned it in your
verbal statement, about deconstructing the systematic barriers
and challenging the vested interests that sustain segregation
and low expectations. Talk to me about that. What do you mean
by that?
Mr. Bernstein. I'm actually very happy you asked about
that, because I'd like to frame it this way. We are very, very
pleased that the Department of Justice has joined with the
advocacy community and it begins to ask the question first, not
what are the conditions in the institution, but why are people
here to begin with. When you begin asking that question, it
takes you all kinds of places.
What you find out, for instance, is that hospitals remain
open because they're big employers and within States there's
political pressure for them to remain open unnecessarily and
for beds to be filled there. What we find is stories of
operators of facilities for people with serious mental illness
who troll homeless shelters, because people are treated as
commodities and it's a business. What we find is that in some
States--in one very large State that I'd prefer not to mention,
every year a bill would come up where it's demonstrated that
the State could save millions of dollars by moving people out
of institutions for mental disease that are privately owned and
into integrated programs that are funded by Medicaid, and every
year the bill fails.
The industry that profits from dependency and isolation has
developed political prowess and they use it. I think as was
alluded to earlier, in our view it's the role of government to
rise above that and to look out for the best interests of its
citizens.
So when I talk about deconstructing systems, that's one
piece. The other piece, which is more at a Federal level, is
we've heard today about all kinds of wonderful new initiatives
that reinforce community living, reinforce choice, personal
control, ownership of one's own home, but these are piecemeal
solutions. At some point we, as a nation, are going to need to
look at what are we paying for and why do we continue to pay
for solutions that we know are archaic and segregating. I think
those are all pieces that we really don't talk enough about.
The Chairman. I guess that we started this segregation
hundreds of years ago and it just became such an integral part
of society that vested interests grew up around it and those
vested interests continue on. That's not to say that we haven't
made a lot of progress. As Ms. Thaler pointed out, we have made
progress in the recent past. But we still have a long way to go
and we still don't have, as Mr. Buckland points out, a mandate.
It's still sort of up to the States. Maybe yes, maybe no. We
have waivers, and we have waiting lists that are so long that
people get disappointed waiting on them.
Hanging over all of this, as one who has been sponsoring
MICASA for so many years, the mandate part of it, is the budget
implications, how much is it going to cost. I've been arguing
this for 15 years at least on this aspect, that I think that
CBO has it wrong in terms of how they look at it. Who was it
who said look at the longer term? If you look at it maybe in 1
year, 2 years, maybe so. But if you look at it in terms of a
continuing obligation of our government to do what we said in
the ADA and what Olmstead said, if we look at it as a
continuing obligation over a longer period of time, the
economics become on our side, as you might say, much cheaper.
As I always say, if you look at the economics, not to say
anything about certain quality of life and giving people
choices to live independently.
But anyway, about deconstructing the systematic barriers,
that's been one of the real tough things in this whole thing.
Well, Mr. Knight was a subject of that systematic barrier that
Mr. Knight had when he encountered that. Again, you were--was
it 2 years you were in, 2 years? Is that right, Mr. Knight?
Mr. Knight. Yes, sir.
The Chairman. Two years that you kept trying to get out. It
took you 2 years.
Mr. Knight. Yes, sir.
The Chairman. Of constant effort. Well, that just shouldn't
be.
Mr. Knight. No.
The Chairman. Obviously, Mr. Knight is perfectly capable of
living in the community, and he's proven that. He worked for
many years by himself.
Mr. Knight. Before that I'd lived nearly all my life by
myself.
The Chairman. Exactly, precisely.
So again, you point to these things and you say, ``Why
can't we finally get over that hurdle?'' Well, we are trying
with the Community Choice Option, that we've got to get the
States to get into. I asked Ms. Mann earlier about the 6
percent bump-up, will that help? We hope that will be
sufficient to do that.
I think maybe that, coupled with a new, aggressive role on
the part of the Department of Justice to go after those that
are not abiding by the Olmstead decision, and you get the
carrot and the stick. You get the carrot with the 6 percent and
you get the stick with maybe the Department of Justice's
becoming more active, with the Bazelon Center of course always
being actively involved in cases dealing with mental health and
disabilities, that perhaps we can see after next year a more
rapid deconstruction of this.
Thank you.
Mr. Buckland. Thank you. We're very hopeful.
The Chairman. We hope. We hope.
Mr. Buckland. The planets are in alignment.
The Chairman. Pardon?
Mr. Buckland. The planets are in alignment for that.
The Chairman. Well, I sure hope so. I sure hope so.
Listen, I took more time than I meant to talking rather
than asking questions. But Senator Casey is here and I wanted
to go to Senator Casey.
Statement of Senator Casey
Senator Casey. Mr. Chairman, thank you very much for the
hearing. I'm sorry I'm late here for the second panel.
I want to first of all commend our chairman for the
hearing, but also in a larger sense for what he's been doing
all these years on so many issues, and especially those that
relate to the subject matter of this hearing. So I want to
thank Senator Harkin for that and the work of this committee.
I wanted to start with a question for Nancy Thaler. You
worked in Pennsylvania for I guess the Department of Public
Welfare for 10 years?
Ms. Thaler. Sixteen years.
Senator Casey. Sixteen, OK. I'll get my math right. One of
the main features of your testimony was how to deal with
opposition from families and being able to make what has to be
a very difficult transition. I know you addressed it in your
testimony, but I was struck in the section that begins with
opposition from families being another challenge.
You say,
``What we know from 40 years of experience is that
people do better in the community than in institutions,
no matter their age. They learn new skills, develop new
competencies, and appear to be much happier.''
And then you go on from there.
I know you refer to a couple of approaches or strategies
that help you do that. Can you highlight those again, because I
do remember going back in Pennsylvania--gosh, I don't know what
year it was, but 10 or 15 years, where we are, and still are, I
guess, all these years later--I can remember this being debated
in the 1960s and the early 1970s, going back that far. But that
process of de-institutionalization and, even though the
evidence was very compelling that it was the best approach for
individuals, that families had a hard time with it, and at
times our State didn't do a very good job of recognizing that.
You had these horrific situations where people would--I
remember one in particular--be put on a bus to be taken out of
the institution, and the windows were obscured so that families
couldn't see them, and there were State police, and it was a
disaster of a process.
I wanted to have you highlight some of the strategies that
you know work, so that families can make this transition with
at least a lot more peace of mind.
Ms. Thaler. The strategies--and there are many of them--
work 99 percent of the time. There are instances where no
amount of strategizing or working with families or talking
things through will achieve agreement. I think that's the
situation that you're referring to.
If we approach families who made a decision 20, 30 years
ago with a level of understanding and respect for their pain
and anguish and spoke to them from that point of view, we win
and earn their trust. Many of those families did not want to
put their sons and daughters into institutions and they have a
sense of guilt and sorrow and pain over that. When we invite
them to consider community placement, we re-open all of that
pain up.
The professionals and people who work with families need to
first recognize that and take the time that's necessary to win
their trust and confidence and then show them, show them how it
works, show them where it works, introduce them to other
families who are satisfied and happy.
In the situation you're talking about, one of the things we
learned is that the more we could give the families in the
process, the more confident they were. So when they could
choose which provider, choose what part of town, be involved in
identifying the home, even engaged in hiring the staff, their
confidence grew, and they turned out to be champions of
community services.
But time and respect are important. Oftentimes closures
have target dates that truncate the process, which we have to
be careful not to do.
Senator Casey. I know in our State, in Pennsylvania, there
are still, by one estimate, as many as over 1,200 people still
living in five State-run institutions.
One line from your testimony really struck me as well,
about one of the fears that families have is when you move an
individual out of an institution there'll be less oversight,
which is not an unreasonable or not an illogical conclusion to
reach. We all think in terms of oversight being better, I
guess, if you have a finite structure or location. That makes
sense.
But you say in the testimony, ``What is often not
recognized is the considerable attention that the Centers for
Medicare and Medicaid Services and the States have placed on
quality assurance.'' I think that's an accurate assessment,
although we've got to prove it and we've got to be vigilant
about it.
Ms. Thaler. Yes.
Senator Casey. I know my time's up, but I do want to thank
all of the witnesses for being here. Mr. Knight, thank you for
sharing what can only be very personal experiences in your own
life.
Mr. Knight. Thank you.
Senator Casey. Thank you very much.
The Chairman. Just responding to Senator Casey on the
oversight, again what Mr. Knight said in his testimony--I was
just reading it again--that the institution that he was in, he
said that you didn't have your own things, there was no
privacy, your personal belongings are not safe, things like
electronics, food and money were stolen, residents screaming
all night long, you have to eat what they prepare for you, the
floors and bathrooms had urine all over them, ET cetera, ET
cetera. So that was institutional care.
Mr. Knight. Now they've rebuilt it.
The Chairman. Yes?
Mr. Knight. Now they've rebuilt it, so I don't know how it
is now. It might be different now.
The Chairman. It's still not as good as living on your own,
though.
Mr. Knight. No. Oh, no.
The Chairman. Not at all.
Mr. Knight. I'll still live on my own, not in there.
The Chairman. Absolutely.
Ms. Thaler, one thing I wanted to follow up with you is
that I understand there's a trend in some States--and I said
that at the earlier panel, but I don't think I followed up on
it enough--to build or renovate segregated residential
facilities. Is that happening? I need more information on that.
Why would that be happening?
I can see the pause, this deconstructing. But to be
actually building more facilities--is that happening?
Ms. Thaler. Yes. Not in a lot of States, but it is
happening in some places. Despite our generally universal
understanding that community services are what people want and
where people are better off, there continues to be support for
institutional services, minimal but some advocacy support, and
political support.
So we have a handful of States who have launched the
building of buildings on the grounds of State institutions,
either new buildings or replacement buildings, oftentimes then
administered by the administration that follows them, that are
sort of stuck with them. But they're anomalous events in time
that have to do with the forces locally that still believe we
need institutions.
The Chairman. Well, I've got to look at that more closely.
This just can't be done. I mean, that's absolutely going in the
wrong direction, and you just build up a whole new set of
things that have to be deconstructed over time.
Ms. Thaler. I might add that the Office of Civil Rights and
the protection and advocacy agencies have been on this, Mr.
Chairman.
The Chairman. Good. The P and A's are great.
Kelly, every time I see a center for independent living,
they're really good. They do good work, and I don't mean just
to say that to you, but they get things done. What's so unique
about them? Why are they so successful?
Mr. Buckland. Well, Senator, I think it's because they are
run by people with disabilities and they've experienced what we
just heard from Mr. Knight. I think a lot of people who've
worked in centers have gone through very similar experiences
and they understand this. That's what I think makes them
unique.
But thank you for recognizing that. I appreciate it.
The Chairman. They do, they just get things done. They're
very, very, very good at that.
Now, you do a lot of work with the P and A system, don't
you, Mr. Bernstein?
Mr. Bernstein. Yes, we do.
The Chairman. Do you share Ms. Thaler's opinion of them,
that they're very aggressively pursuing some of the--not
opinion, her view--that they are aggressively pursuing some of
these rebuilding of segregated facilities?
Mr. Bernstein. The P and A's are on it. Like most
protection systems, they're very thinly spread and have huge
demands on them. But notwithstanding their efforts and our
efforts, one State is building a 620-bed psychiatric hospital
right now, and other States are actually declaring parts of
existing hospitals to be the community, and they're making
community placements that are on the grounds of the hospitals.
So there are all kinds of things going on that one wouldn't
expect 20 years after the ADA was enacted.
The Chairman. Is this publicly known, what State? I mean,
is it a secret?
Mr. Bernstein. The 620-bed State, Oregon.
The Chairman. Oregon?
Mr. Bernstein. Yes.
The Chairman. Well, I just heard that Oregon earlier was
one of the good States.
Mr. Bernstein. It is. But part of the issue--and again,
this is a conversation we haven't had as a nation. A State
legislature can get its arms around building a facility to
correct problems in the State. They understand that. To talk
about community mental health, where the programs are dispersed
and you can't photograph it, it's a harder sell. So I think
that's part of the dynamic here.
The Chairman. It seems odd that I heard earlier that Oregon
was one of the leading States in getting people out of
institutions, but you tell me Oregon is now building a 620-bed
psychiatric hospital.
Mr. Bernstein. And another 300-bed one down the road. Part
of this has to do with forensic patients, who really for no
good reason get sucked up into the correctional system and then
are transferred to mental health.
Let me say, Oregon has a very, very fine community mental
health system, but it's a shell of what it used to be. Things
are de-funded because of the economic times.
The Chairman. If they're de-funded, how can they be funding
a 620-bed unit? That costs a lot of money.
Mr. Bernstein. It absolutely does.
The Chairman. Find out for me. Get me some information on
this. I wonder if Mr. Merkley knows this. I've got to talk to
Senator Merkley about this, because we've discussed other
things in terms of community-based services before. So I have
to discuss that with him and see what's happening in Oregon.
Has anybody else got anything they want to bring up before
I dismiss the panel? Mr. Buckland, anything else?
Mr. Buckland. Well, Mr. Chairman, I too would just like to
be one of the people in line to thank you for your leadership
on holding the hearing, all the stuff that you've done for
people with disabilities in the country. It's much appreciated
by all.
The Chairman. You're kind to say that. I have good people I
work with.
Ms. Thaler.
Ms. Thaler. I express my appreciation on behalf of all of
my members as well.
The Chairman. Well, thank you very much, Ms. Thaler.
Mr. Knight.
Mr. Knight. No response.
The Chairman. Just keep on doing good stuff. I hope you get
your legs back.
Mr. Knight. Sorry I'm a little nervous, but it's the first
time.
The Chairman. Oh, don't worry about that, not around us
anyway.
Mr. Knight. I'll be better next time.
The Chairman. I hope you get use of your legs back soon so
you can get back to work.
Mr. Knight. Oh, yes. I'm working on walking now. I used to
be in a wheelchair.
The Chairman. Good. Good for you. Keep up your good work.
Mr. Bernstein, any last thing?
Mr. Bernstein. Senator, thank you so much for this hearing.
But even more so, thank you for all that you do.
The Chairman. Well, you're nice--you're all nice to say
that. I didn't mean to elicit it. I just thought maybe you
might have something you wanted to say, some additional input
here.
But again, this is an ongoing thing. We've just got to
recognize that there's no substitute for independence and for
people having their own choice. Every time I bring it up--I
say, ``Look, if Medicaid money is going out there and a person
can get that Medicaid support if they go in the nursing home,
shouldn't they be able to get at least that same amount of
money if they decide to go someplace else to live?''
Everybody says, yes, that makes sense. I say: ``Well, guess
what; it isn't happening,'' and it hasn't happened. But we're
trying to get the Community First Choice Option to at least
move it ahead a little bit. But as long as I'm here, I'm going
to continue to try to get a mandate that Medicaid money has to
go to the person; the person himself or herself decides what
they want to do with it, where they want to live, and not have
to be told that they will get it if they go to a nursing home,
if you've got a waiver, if you get on the waiting list; if all
the stars, as you say, are in alignment, maybe then you can get
that money if you live in the community.
We've got to do away with that. We've got to break that
whole system down. I think the most frustrating thing in my job
here has been how long it's taken to do that. But we can't give
up on it. I know none of you have given up on it and we're not
going to give up on that battle either.
Thank you all very much for being here.
The record will stay open for 10 days for Senators to enter
any questions to you that they might have.
[Additional material follows.]
ADDITIONAL MATERIAL
Response to Questions of Senator Enzi by Cindy Mann
Question 1. Per our discussion at the hearing could you name a few
States that Congress should be looking at as shining examples of
Olmstead implementation? What makes those States successful?
Answer 1. Certain States have created robust home and community-
based service (HCBS) delivery systems, and have done a good job at
enabling individuals to receive services in the most integrated
settings appropriate to their needs. That said, even within States
where great strides have been made for some populations, there may be
opportunities for improvement in other areas. Some of the hallmarks of
strong service delivery systems that seem to best position a State to
meet their obligations under the Americans with Disabilities Act (ADA)
and the Olmstead decision include: the availability of individual
budget allocations that enable individuals to freely choose where to
receive services; single points of entry to the services of their
choice; strong functional, objective assessment tools; person-centered
planning processes; and robust service options in the community with
significant opportunities for individual control and direction.
Question 2. For States that are struggling with implementing the
decision why are they struggling? What enforcement action steps can and
has your Center taken to help enforce the decision?
Answer 2. Over the last two decades, CMS has worked diligently with
our other Federal partners who have responsibility for Olmstead
enforcement to identify opportunities for the Medicaid program to
further support State efforts in implementing the Olmstead decision. As
noted in our testimony, much progress has been made to date thanks to
the leadership provided by this committee and through numerous
legislative initiatives. Specific examples include:
Hundreds of millions of dollars have been provided under
the Real Choice Systems Change (RCSC) grants and Ticket to Work and
Work Incentives Improvement Act (TWWIIA) to provide States greater
capacity to build community-based infrastructure, expand access to
community-based services, and foster community integration for
individuals with disabilities.
Dating back to 1999, CMS has issued a series of State
Medicaid Director (SMD) letters designed to illuminate Medicaid
policies and programs that may contribute to equalizing access to all
community and institutional long-term care services. Our most recent
SMD letter of May 20, 2010 provided States with information on new
tools for community integration available under the Affordable Care
Act, reminded States and other key stakeholders of the array of tools
already available to serve individuals in the most integrated setting
appropriate, and explained opportunities for Federal assistance in
overcoming key barriers.
We have also continued to provide technical assistance to
all States as they seek to overcome individual challenges to
implementing HCBS options. In addition to the lack of available State
resources, challenges often include overcoming barriers related to
affordable housing for individuals who may no longer have community
ties. States may also experience barriers related to their workforce
and provider capacity. As more individuals receive care in HCBS
settings, it is imperative that qualified staff and providers are
available to provide needed care.
Additionally, CMS has dedicated significant resources to
improving the oversight and monitoring of HCBS waivers nationally. CMS
has heightened its expectations of States around quality programs and
ensuring the health and welfare of the individuals served.
Specifically, CMS requires States to have an operational Quality
Improvement Strategy (QIS), and requires detailed information on the
methods used by the State to discover, remediate and provide systems
improvements to their programs. Through our application and review
process, we expect States to identify performance measures to
demonstrate their compliance with all statutorily mandated assurances,
and to provide data to demonstrate States' efficacy in identifying and
fixing problems. We are continually working to ensure that States have
the tools and resources to carry their QIS out effectively. We provide
robust technical assistance at no cost to States and assist in the
design and implementation of their programs. While we work to achieve a
collaborative Federal/State relationship, in the event problems within
a particular State are identified, CMS requires the State to make
changes in its programs to improve quality.
While these efforts have begun to tip the long-term care balance
towards community-based services, several statutory and structural
barriers impede further progress. For example, while coverage for
institutional services is mandatory under Medicaid, coverage for HCBS
under the section 1915(c) and section 1915(i) programs, as well as key
Medicaid State plan services, is optional. As such, in times of
economic downturn and limited budgets, States may make difficult
choices that limit access to these ``optional'' services. The
Affordable Care Act provides new HCBS options for States, which CMS
hopes will improve access to HCBS across the country.
Question 3. Can you provide data on the cost savings associated
with providing community-based services versus institutional care?
Answer 3. There is significant research regarding the efficacy and
efficiency of HCBS, particularly in comparison to institutional care.
However, given the structural differences in how States implement
institutional and HCBS services and in how individuals gain access to
these services, a traditional cost-effectiveness analysis has proven
challenging to the research community. The nature of the services and
their reimbursement structure is fundamentally different across
different care settings and even among different populations. As a
result, recent studies performed by economists Stephen Kaye and David
Grabowski suggest that while making progress in refining cost-
effectiveness analysis, CMS must also explore subjective measurements
for quality of life and place greater emphasis on consumer choice. In
addition, it is difficult to precisely quantify the cost of expanding
the entitlement to HCBS services because of the unknown numbers of
individuals who may need and avail themselves of HCBS but who would not
have availed themselves of institutional nursing facility services. A
recent study by Charlene Harrington at the University of California,
San Francisco indicates that States with well-developed HCBS programs
had lower overall LTC spending, as they were able to reduce
institutional utilization over time.
Beyond the question of cost savings, the Administration is
committed to providing each individual living with disabilities access
to quality long-term services and supports in the most appropriate care
setting of his or her choice.
Question 4. What would CMS do for rural States, like Wyoming, where
we have a housing crisis? While I believe in community-based services,
housing is scarce across Wyoming. In mining communities we have 15-20
miners renting two bedroom apartments and taking turns sleeping there
on a rotating basis. What assistance does CMS provide for rural States
to better implement Olmstead when they have capacity barriers?
Answer 4. CMS, through the Medicaid program, can address housing
capacity issues through two primary roles. First, CMS supports State
efforts to educate and coordinate between the respective systems of a
State's housing and human service agencies. Second, CMS supports
resources that link human service and housing agencies with one another
for purposes of planning and developing the necessary housing capacity,
and/or connecting consumers with the housing and the services and
supports they need to live meaningful lives in the community.
In our experience, many human service agencies are not fully aware
of the statutory and regulatory authorities, organizational structure,
policies, and programs associated with housing resources and
organizations. It is equally apparent that housing agencies are not
familiar with these elements as they relate to Medicaid or other human
service agencies. More opportunities exist for CMS to facilitate better
collaboration between housing and human service agencies in order to
generate sufficient housing capacity in the community for the elderly
and people with disabilities and link these populations with the
affordable and accessible housing that does exist.
To that end, we are committed to addressing this issue in a
proactive fashion. Shortly after arriving at the Department of Health
and Human Services (HHS), Secretary Sebelius announced the Community
Living Initiative. As part of this initiative, HHS is working through
CMS to implement solutions that address barriers to community living
for individuals with disabilities and older Americans. HHS is also
partnering with the Department of Housing and Urban Development (HUD)
to improve access and affordability of housing for people with
disabilities and older Americans with long-term care needs.
On April 7, 2010, HUD issued a $40 million HUD Notice of Funding
Availability (NOFA) that will provide approximately 5,300 Housing
Choice Vouchers over 12 months for non-elderly disabled families living
in the community or transitioning out of institutional care. CMS will
use the network of State Medicaid agencies, in concert with local human
service organizations, to link eligible families to local housing
agencies which will administer voucher distribution. Of the 5,300
vouchers set aside as part of this program, up to 1,000 will be
specifically targeted for non-elderly individuals with disabilities
currently living in institutions but who could move into the community
with assistance. Local housing agencies will place on their waiting
lists any otherwise eligible individuals transitioning out of
institutional care that demonstrate they will receive necessary
services, including care/case management services. The remaining 4,300
can be used for this purpose also, but are targeted for use by non-
elderly disabled families in the community to allow them to access
affordable housing that adequately meets their needs.
Subsequently, on June 22, 2010, CMS announced a technical
assistance (TA) contract designed to implement the following concepts:
Educate housing and human service agencies at the Federal,
State, and local levels of government to help each type of agency
navigate other organizations to obtain essential resources;
Provide critical information about the housing and human
service sectors that could include relevant Federal statutory and
regulatory requirements, and organizational structures, culture,
policies and programs;
Assist State-level housing authorities, Medicaid agencies
and population-specific authorities on how and with whom to link to
obtain housing and services/supports for consumers; and,
Assist regions and entities within States to plan, fund
and develop housing options for vulnerable populations.
[With that, the committee will stand adjourned.]