[Senate Hearing 113-839]
[From the U.S. Government Publishing Office]

                                                        S. Hrg. 113-839




                                 OF THE

                          LABOR, AND PENSIONS

                          UNITED STATES SENATE


                             SECOND SESSION


                             OLMSTEAD AT 15


                             JUNE 24, 2014


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                       TOM HARKIN, Iowa, Chairman

PATTY MURRAY, Washington		MICHAEL B. ENZI, Wyoming
BERNARD SANDERS (I), Vermont		RICHARD BURR, North Carolina
ROBERT P. CASEY, JR., Pennsylvania	JOHNNY ISAKSON, Georgia
KAY R. HAGAN, North Carolina		RAND PAUL, Kentucky
AL FRANKEN, Minnesota			ORRIN G. HATCH, Utah
TAMMY BALDWIN, Wisconsin		MARK KIRK, Illinois
CHRISTOPHER S. MURPHY, Connecticut	TIM SCOTT, South Carolina

                      Derek Miller, Staff Director

        Lauren McFerran, Deputy Staff Director and Chief Counsel

               David P. Cleary, Republican Staff Director


                          C O N T E N T S



                         TUESDAY, JUNE 24, 2014


                           Committee Members

Harkin, Hon. Tom, Chairman, Committee on Health, Education, 
  Labor, and Pensions, opening statement.........................     1
Alexander, Hon. Lamar, a U.S. Senator from the State of 
  Tennessee, opening statement...................................     2
Hatch, Hon. Orrin G., a U.S. Senator from the State of Utah......     4
Casey, Hon. Robert P., Jr., a U.S. Senator from the State of 
  Pennsylvania...................................................     5


Smith, Emmanuel, Protection and Advocacy for Beneficiaries of 
  Social Security (PABSS) Advocate, Disability Rights Iowa, Des 
  Moines, IA.....................................................     6
    Prepared statement...........................................     7
Justesen, Troy, Ed.D., Director of Public Policy, Utah 
  Developmental Disabilities Council, Orangeville, UT............     8
    Prepared statement...........................................     9
Robertson-Dabrowski, Norma, Director of Nursing Home Transitions, 
  Liberty Resources, Philadelphia, PA............................    11
    Prepared statement...........................................    12
Godwin, Gail, Executive Director, Shared Support Maryland, 
  Baltimore, MD..................................................    14
    Prepared statement...........................................    15
Thornton, Donna, Washington, DC..................................    16
Thornton, Ricardo, Washington, DC................................    16
    Prepared statement...........................................    18





                         TUESDAY, JUNE 24, 2014

                                       U.S. Senate,
       Committee on Health, Education, Labor, and Pensions,
                                                    Washington, DC.
    The committee met, pursuant to notice, at 2:38 p.m., in 
room SD-106, Dirksen Senate Office Building, Hon. Tom Harkin, 
chairman of the committee, presiding.
    Present: Senators Harkin, Alexander, Casey, and Hatch.

                  Opening Statement of Senator Harkin

    The Chairman. Good afternoon. The Senate Committee on 
Health, Education, Labor, and Pensions will come together for a 
roundtable discussion on Moving Toward Greater Community 
Inclusion--Olmstead at 15.
    Our discussion will focus on developments in advancing the 
community integration of people with disabilities and the 
impact of the Olmstead decision 15 years ago. I will also be 
interested to hear what the panelists think needs to be 
accomplished to make home- and community-based supports the 
norm for people with disabilities.
    As I said, this Sunday was the 15th anniversary of that 
landmark U.S. Supreme Court decision. This 1999 Supreme Court 
decision held that the unnecessary segregation of people with 
disabilities from society violates their civil rights under the 
Americans with Disabilities Act.
    When Congress passed the ADA, we described the segregation 
of people with disabilities as a serious and pervasive form of 
discrimination. Title II of the ADA says that no person with a 

        ``shall, on the basis of disability, be excluded from 
        participation in or be denied the benefits of the 
        services, programs, or activities of a public entity, 
        or be subjected to discrimination by any public 

    One of the most important aspects of the ADA is the 
integration mandate, which requires public entities to ensure 
the administration of all programs and services in the most 
integrated manner possible. In Olmstead, the Supreme Court 
found that preventing people with disabilities from living in 
the community with their nondisabled peers constituted 
discrimination and was a violation of their civil rights under 
the ADA.
    The Court wrote that,

          ``Unjustified institutional isolation of persons with 
        disabilities is a form of discrimination. 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 and severely diminishes 
        the everyday life activities of individuals, including 
        family relations, social contacts, work options, 
        economic independence, educational advancement, and 
        cultural enrichment.''

    There remain, however, problems. Despite the Olmstead 
decision 15 years ago, over 75 percent of States spend a 
majority of their long-term care dollars on institutional care 
and support, and the number of people with disabilities under 
the age of 65 in those settings increased between 2008 and 
    That is why, today, I have introduced a bill called the 
Community Integration Act, a bill that ensures that people with 
disabilities can choose to live in the community and receive 
the same supports and services they would receive in 
institutional settings. Our national policies should no longer 
have a bias toward institutional care.
    I've often wondered--under Medicaid, if you go into an 
institution, they must pay. If you decide you don't want to go 
into an institution but you want to live in a community, they 
don't have to pay. They may or they may not, but they don't 
have to. But if you go into an institution, they have to pay. 
That should be changed. Individuals should be able to make a 
choice about where their long-term supports and services are 
available, and my bill would ensure that all people with 
disabilities can make that choice.
    So this afternoon, we will hear from a number of 
individuals who have spent time in institutions, some young 
people who expect to be served in their communities, and 
providers who are working to ensure people with disabilities 
have the same access to the community as their nondisabled 
peers. I eagerly look forward to our discussion.
    Now I invite our Ranking Member, Senator Alexander, to give 
his opening statement.

                 Opening Statement of Senator Alexander

    Senator Alexander. I want to thank Senator Harkin for this 
roundtable and thank the witnesses for coming very much. This 
has been the subject that Senator Harkin has cared the most 
about during his long tenure in the U.S. Senate. We all respect 
him for that.
    The Olmstead ruling, as he said, began to reverse a long-
term trend of preferring institutions over home-based or 
community living centers. And he mentioned those benefits, and 
we're here to celebrate the Olmstead ruling as a big victory 
for individuals with disabilities.
    I hope today that we talk some about three issues. One is 
Medicaid waivers, one is overtime regulation, and one is 
workforce training. We rely on State governments to implement 
Medicaid. I used to be a Governor. I struggled with that 
myself, and I support giving the States more flexibility.
    According to the National Council on Disabilities, if you 
go to a nursing home, the average cost is about $63,000. At 
home and in communities, the average cost is about $31,000 for 
those who prefer that, which many do. That's not only good 
public policy. It makes fiscal sense, and it allows States to 
come up with solutions which serve more people at homes and in 
    Our State of Tennessee wants to be a leader in supporting 
independent living and competitive employment for all 
individuals with intellectual and developmental disabilities. 
Tennessee spent $624 million of State funds to provide long-
term supportive services to people in community settings. Eight 
thousand Tennesseans benefit from the waivers that the State 
has to get in order to do that. That's a huge accomplishment 
when you consider that Tennessee's Choices program just got up 
and running in 2010.
    Yet for every person enrolled in Tennessee's program, 
there's another person with intellectual disabilities on a 
waiting list. That's true in many States. States have to renew 
their waivers every 5 years. Tennessee's waiver expires in 
December. So the first thing I'd like to say is that I would 
like to see more flexibility for States to use a cost-effective 
way to expand community-based approaches.
    Also, I'm concerned about the Obama administration's 
proposed regulation on overtime for home care workers. I fear 
that if it goes through, it will increase the cost of in-home 
care without a corresponding increase from third-party payers 
like Medicaid, and that will be fewer options for those who 
prefer in-home living.
    And, finally, tomorrow, the Senate will take up a huge bill 
that Senator Harkin and I worked very hard on for many years, 
actually, that reauthorizes the Nation's job training programs. 
With Senator Harkin taking the lead on this part of it, 
especially, it will improve accountability to ensure that 
programs serving individuals with disabilities are doing their 
jobs, and it focuses on youth transition and increasing 
opportunities for competitive employment.
    That bill has now been approved by every single Senator, it 
looks like, and it has passed the House. We fully expect that 
it will pass the Senate and then the House and then be signed 
by the President, and we look forward to that.
    Thank you, Mr. Chairman, for the hearing.
    The Chairman. Thank you, Senator Alexander. Thank you for a 
very close, good working relationship here on this committee 
and working together on things. It's just another example that 
people who probably philosophically disagree can actually get 
things done. I appreciate this great working relationship that 
we've had.
    Let's introduce our panel. Our first witness is from my 
home State of Iowa, Emmanuel Smith, who is part of what I call 
the ADA generation. He's a young person who has grown up with 
the rights and protections guaranteed by the ADA and by the 
Olmstead decision.
    Mr. Smith has a bachelor's in political science from Drake 
University in Des Moines. He is a former intern with the Great 
Plains ADA Center. He currently works at Disability Rights Iowa 
as an advocate for beneficiaries of social security.
    Our second witness is from the State of Utah, and I'm going 
to yield to Senator Hatch who was here with me when we hammered 
out the ADA in 1988, 1989 and 1990. We had a great working 
relationship. I've said many times that Senator Hatch stepped 
in at the right time to break a little log jam and help us get 
that bill through. It's just been a great friendship and 
working relationship with Orrin Hatch for all these years. He's 
a great supporter of disability rights.

                       Statement of Senator Hatch

    Senator Hatch. Thank you, Mr. Chairman. I want to thank 
both of you for your leadership in this area. You two are the 
best Senators I've served with, and this is a very important 
committee. And I still remember both of us breaking down and 
crying as we walked off the floor on the Americans with 
Disabilities Act and saw all of those people in wheelchairs and 
on crutches and so forth who were just thrilled that we were 
able to get that through.
    But thank for allowing me to introduce a very fine man, Dr. 
Troy Justesen. In 2006, I was honored to recommend to President 
George W. Bush that Dr. Justesen be nominated as Assistant 
Secretary of Education for Vocational and Adult Education, 
where he did serve for 2 years. Dr. Justesen holds a bachelor 
of science in education and a master's in special education. 
I'm proud to say that he earned his degrees at Utah State 
University before earning a doctorate in higher education from 
Vanderbilt University.
    His impressive credentials include more than 12 years of 
Federal service. He worked at the Department of Justice in the 
Civil Rights Division, managing investigations under the 
Americans with Disabilities Act, and he was the former Deputy 
Executive Director of the President's Commission on Excellence 
in Special Education and later worked on implementing the 
Individuals with Disabilities Education Act at the Department 
of Education.
    He served as Associate Director for Domestic Policy at the 
White House, where he led President Bush's new Freedom 
Initiative promoting the full participation of people with 
disabilities in all areas of society. I am pleased that I had a 
role in passing the Americans with Disabilities Act and will 
continue to foster more community-based opportunities for 
persons with disabilities and, of course, their families as 
    I cherish working with Dr. Justesen. We share a deep and 
ongoing commitment to fostering opportunity for persons with 
disabilities and not just talking about it but actually 
creating sound policy. If you'll look back at the important 
decision made 15 years ago this week, Dr. Justesen will make it 
very clear that we need to think more creatively about how to 
remove barriers preventing persons with disabilities from 
leading independent lives.
    I intend to keep working so that all Americans with 
disabilities can access the option of home- and community-based 
services that allow for increased employment and access to 
educational and social opportunities. We are truly honored to 
have such an accomplished gentleman as Dr. Justesen with us 
today. He has worked tirelessly with Federal, State, and local 
governments for full enforcement of the Americans with 
Disabilities Act.
    I really look forward to his remarks today, although I do 
have to move on to another assignment. But I want to thank you 
both for allowing me to make these comments about a very good 
friend and good person who has made a real difference in these 
    Thank you, Mr. Chairman.
    The Chairman. Thank you very much, Senator Hatch.
    Our third witness is from the State of Pennsylvania, and 
I'll ask my colleague, Senator Casey, to make this 

                       Statement of Senator Casey

    Senator Casey. Mr. Chairman, thank you for holding the 
roundtable and for the work that you and Ranking Member 
Alexander do. I am pleased to be able to introduce a fellow 
Pennsylvanian, Ms. Norma Robertson-Dabrowski. Ms. Robertson-
Dabrowski works as the director of Nursing Home Transitions for 
Liberty Resources. That's in Philadelphia in Philadelphia's 
Center for Independent Living. She assists nursing home 
residents with their transition into the community.
    At 16, she was involved in a car accident resulting in her 
quadriplegia. During the ensuing 7 years in which she was 
institutionalized, she completed her high school diploma and 
earned an associate's degree. Liberty Resources helped her move 
into the community in 1991, and today she has two godchildren 
and lives on her own. We are grateful she is with us.
    We welcome you here to the roundtable along with the other 
witnesses that are with you today, and we look forward to your 
testimony. Thanks for being here with us.
    The Chairman. Thank you very much, Senator Casey.
    Senator Mikulski was going to be here to introduce our next 
witness, but she's involved in Appropriations Committee right 
now and couldn't make it.
    Our next witness will be Gail Godwin. Ms. Godwin is the 
executive director of Shared Support Maryland, an organization 
which provides person-centered and client-centered supports to 
people with intellectual and developmental disabilities, 
including those with intensive support needs.
    She is also an executive member of the Maryland DD Council 
and a member of the Maryland Association of Community Services 
Board. Prior to founding Shared Support Maryland, Gail has 
worked as an advocate and service coordinator for people with 
disabilities for over 20 years.
    Thank you for being here.
    Next we'll hear from Donna and Ricardo Thornton. Mr. and 
Ms. Thornton were institutionalized as children. Both wound up 
at Forest Haven right here in the DC area. In their early 20s, 
they had the opportunity to move into supported community 
living. Now they both work in the community at a competitive 
wage. Mr. Thornton works at the DC public library, and Ms. 
Thornton works at Walter Reed Medical Center.
    The Thorntons have been married for 30 years and are now 
proud grandparents. They both serve on boards and committees 
related to the issues they are passionate about. Ms. Thornton 
is a board member of the ARC of DC. Mr. Thornton is a member of 
the DC DD Council and a Special Olympics Ambassador.
    You have been before our committee before, if I remember 
right. So thank you for coming back again.
    Thank you all for being here today. I'm going to ask each 
witness to kind of keep your remarks to 3 minutes or so and 
sort of make your point so that we can get into an open 
discussion. That's why we call it a roundtable, so we can have 
an open discussion without having the formalities of a dais and 
a hearing.
    I have your statements. They'll all be made a part of the 
record in their entirety. But we'd just like you to sum up a 
little bit what it is that you think we ought to know. And, 
again, we're trying to get to Olmstead and why it is we're not 
moving faster, doing better at community integration.
    As Senator Alexander said, we've got data that shows it's 
actually cheaper.
    Senator Alexander. Half as much.
    The Chairman. Yes, and so from a budget standpoint, plus 
people in the disability community would rather make their own 
choice on where to live and to live with their friends and 
their families in their community. So it's just always 
perplexed me why we can't move ahead more aggressively on this.
    So kind of keep to that, and maybe if you've got 
suggestions for us, different things--I know Senator Alexander 
brought up a couple of things on this. So I'll just start with 
Mr. Smith, and we'll just work down. Just take a couple or 3 
minutes. What is the most important thing you think we ought to 
know? And then we'll open it for discussion.
    Here's the other thing I'm going to say. Once we get 
through with this--we'll take a few minutes for this--we'll 
open it for general discussion. So if Mr. Justesen says 
something and makes a point, and you'd like to add to it or say 
something, take your name card and just turn it up. If you need 
help doing that, just give us a high sign or something like 
that. That way, we'll move to you, and we'll kind of keep a 
discussion going. OK?
    Emmanuel Smith.

                  RIGHTS IOWA, DES MOINES, IA

    Mr. Smith. Thank you so much for having me here today. It's 
an incredible privilege. I was born with brittle bone disease. 
I've had 50-plus broken bones in my life. Lest I tempt fate, I 
think it's fair to say I'll have many more.
    So my health has always been in a State of flux, and I've 
very much depended on my mother and my family to help care for 
me and help me to live independently. I come from a single 
parent household. My mother is getting older. I grew up very 
aware that my health could change in a matter of moments, and 
the health of my mother could change, and that could put me in 
a very precarious position.
    Unfortunately, to a certain degree, I had to grow up under 
the specter of the possibility of living in a nursing home at 
some point in my life. For a young person, that can be 
incredibly poisonous, especially because we tell young people 
to get involved with vocational rehabilitation to work and live 
to the fullest extent that they're able. But then they're 
forced to do so under the threat of institutionalization, as if 
the last third of their life is pre-written.
    For me, that was incredibly burdensome. That's why I'm so 
thrilled to be able to come today to speak on Olmstead because 
I feel as though it affords me the legal protection to defend a 
life that I've worked hard to cultivate, to defend a career 
that I'm very much passionate about, and more than anything 
else, to keep me in my community.
    As we discuss Olmstead and as Olmstead is discussed 
nationally, I always want to make the point that, yes, 
integration hugely benefits the lives of people with 
disabilities. But it's not just about us. I think a core 
premise of the ADA is that we all benefit from diversity and 
integration, and dare I say that I think my community is better 
for having me.
    We're all better when we have people of different 
backgrounds and minority groups and beliefs living together and 
working together. That seems to me to be a uniquely American 
idea and one that I'm so glad to see brought to fruition 
through the ADA and, by extension, Olmstead.
    [The prepared statement of Mr. Smith follows:]
                  Prepared Statement of Emmanuel Smith
    Thank-you Senators for having me here today. My name is Emmanuel 
Smith and I work currently at Disability Rights Iowa. It's certainly an 
honor to be asked to speak on a law, and by extension a Supreme Court 
decision which I believe plays an important role in my life.
    I have brittle bone disease, and have broken nearly 50 bones. As 
much as I hate to tempt fate, I will almost certainly break many more. 
In addition, I have several sub-diseases that could, through time or 
sudden injury, limit my ability to live and work independently to the 
degree I am currently able, and overnight drastically increase my need 
for services. I grew up with this understanding, and I live with this 
    As a child from a single parent household, I knew that the family 
supports I depended on could not last forever. And should, for whatever 
reason, those family supports fall away just as I was facing 
significant health issues, it was well within the realm of possibility 
that I would end up in a nursing home. Thankfully, Olmstead addresses 
that fear directly through the principle it reinforces and the legal 
protections it affords me.
    Through Olmstead, I have a clearly defined right to receive the 
services I need without sacrificing my place in society needlessly. I'm 
no longer forced to put my dignity, or safety, in the hands of those 
who may not have my interests at heart. My work with the P and A 
network has introduced me to a host of attorneys and advocates who will 
protect me from that, using the legal avenues Olmstead affords them.
    Agency is everything. The feeling that success is possible, and I 
and I alone get to shape my life. It is what has enabled me to throw 
myself fully into my work, and build something lasting and meaningful 
come what may. To tell young people with disabilities to have high 
expectations and work toward independence while denying them the 
supports necessary for basic human dignity later in life would be 
unfair and frankly poisonous. That is why we need Olmstead.
    Olmstead is not an embellishment of the ADA, or an addition tacked 
on through the courts. It is a defense of what Justin Dart Jr called a 
``landmark commandment of fundamental human morality''. That as an 
American, I have the right to live as I wish, work in a field derived 
from my passions, and all within a home not just with family, but of my 
making. A home I spent countless hours in half body casts dreaming of. 
Most importantly, I believe that my community is made better for having 
me, for having diversity of all kinds. If nothing else, the ADA is 
predicated on the idea that we all benefit from living together, and 
operating in stewardship to one another. Olmstead insures that 
inclusion for generations of people with disabilities, and I so greatly 
appreciate you all taking the time to explore its incredible human 
impact and lasting importance.

    The Chairman. Very good. Thank you, Mr. Smith.
    Dr. Justesen.


    Mr. Justesen. I think what we're talking about today is a 
need to reform statutes that are over 50 years old. You talked 
about Medicaid and a little bit about Medicare, and that's the 
Social Security Act that's been around since 1965. When that 
legislation was enacted, we had an entirely different society. 
We had a society that was just on the cusp of including people 
with disabilities as valued people.
    Today, we have realized--and I'm a little bit older than 
Emmanuel, but not much older than he is. And I am the product 
of the benefits of the Rehab Act, the IDEA, the work of the 
ADA. In fact, the very first time I ever left my home State of 
Utah was to come here to DC to see you at the White House when 
the ADA was signed. That was 24 years ago. I can't believe it's 
been that long. You haven't changed a bit, but I've lost all my 
hair. I just wish mine would go gray before it all falls out.
    We need to make some fundamental changes that have been 
improved on the history of the world's greatest success, which 
is the Social Security Act. But today that act is outdated. We 
need to reform Medicare, and we need to reform Medicaid so that 
we remove what many people in the field call the institutional 
bias. That is that we invest far more money in institutional 
settings than we do in home- and community-based settings.
    In fact, because of the successes of all the public 
policies that have made my life possible, it'll make Emmanuel's 
life even more possible than mine has been. We need to move the 
money that's invested in institutional settings that's overly 
invested. In the 1960s, that was good. In the 1970s, that was 
    But today we have the ability, because society is more 
accessible, to live in communities, and we don't want to live 
in institutions. We need to reform Medicare, probably in the 
way in which your legislation that you just introduced, Senator 
Harkin, achieves, so that we have at least an equal balance in 
the investments made in the institutional settings and home- 
and community-based settings.
    I'm one of the individuals that's a success, an example of 
the fact that I don't qualify for Medicaid. I have too many 
resources. My income is too high. That's a good thing. I'm not 
asking to be Medicaid eligible, and I don't think I'm 
representing millions of people with disabilities who want to 
become Medicaid eligible. But we don't want to lose all the 
resources that we've gained, simply because Medicaid is the 
only policy, public or private, in the United States that 
provides long-term services and supports.
    I'm looking at the option of reducing my resources so that 
I can have the option of having attendant services to remain 
independent. The only choice I have is that I'm entitled 
tomorrow to walk into a nursing home, declare bankruptcy, and 
spend the rest of my life in a nursing home. I'm entitled to do 
that. No one in the country is entitled to take less than half 
those resources to live in the community and continue working.
    The policies that we have made successful in this country 
on both sides of the aisle have worked. It has brought millions 
of people to the position I'm at now. We need to take the next 
step so that we don't take a backward step and have millions 
more of us move into nursing homes and double the cost of 
    Whatever your perspective, you're looking at doubling the 
cost of Medicaid if we all knock on the door of nursing homes 
tomorrow. I don't think we want to do that. I don't think 
anyone wants to do that.
    I think what we need is to consider ways in which I should 
use the resources I have to remain independent. But I might 
need a little bit more to stay independent, to remain a 
taxpayer, to, frankly, pay more taxes than most people do, 
because I chose in my life to plan for long-term services. I 
knew that I would need them. I knew that I needed to make those 
investments. Since I was about this man's age, I've invested a 
portion of my income every month so that I would be able to pay 
for long-term services and supports.
    The problem was that 24 years ago, I didn't know it would 
cost me, on average, $70,000 a year. I don't know why, as a 
society, no matter what our political perspective is, that we 
should expect any family in America to have to make those kinds 
of plans to remain independent in society. So I'm here today to 
talk about how we can move forward based on the successes that 
have been made and ways in which, for those of us who need 
Medicaid, it's there, and it is the greatest success in the 
world for support systems.
    Also, where are we going to be when Emmanuel's children are 
sitting here? Will they be able to have long-term services and 
supports and be doctors and lawyers and astronauts and 
everything else that, by the way, people with disabilities can 
do, including maybe going to Catholic law school, or if they're 
good enough--you've called me Doctor so many times, Vanderbilt 
is going to take it back, because the agreement was I wouldn't 
say that too much.
    But maybe I'll have the chance to have my grandchildren go 
to the University of Tennessee and be successful. I want that 
for them, and I think maybe we have a society that wants that 
for the future generation of people with disabilities in this 
    Thank you.
    [The prepared statement of Mr. Justesen follows:]
             Prepared Statement of Troy R. Justesen, Ed.D.
    Thank you Mr. Chairman, Ranking Member Alexander, my own Senator, 
Senator Hatch, and members of the committee, for inviting me to 
participate in this roundtable discussion about the progress made, 
current challenges, and the future for more than 56 million Americans 
with disabilities \1\ as a result of the Americans with Disabilities 
Act \2\ celebrating its 24th anniversary next month and the U.S. 
Supreme Court Olmstead \3\ vs. L.C. decision that was issued 15 years 
ago this past Sunday. The focus of my comments today surround efforts 
to realize Olmstead's promise of creating and providing more home and 
community-based supports and services (HCBS \4\) for individuals with 
disabilities and their families throughout this Nation.
    \1\ About 56.7 million people--19 percent of the population--had a 
disability in 2010, according to a broad definition of disability, with 
more than half of them reporting the disability was severe, according 
to a comprehensive report on this population released by the U.S. 
Census Bureau July 2012.
    \2\ Public Law 101-336; Stat. 104 Stat. 327
    \3\ Olmstead V. L.C. (98-536) 527 U.S. 581 (1999) 138 F.3d 893, 
affirmed in part, vacated in part, and remanded.
    \4\ In 1981, Congress established the Medicaid Home and Community-
Based Services (HCBS) waiver program. The HCBS waiver allows States to 
receive Federal matching funds for a variety of residential services 
and supports to Medicaid beneficiaries who would otherwise require 
institutional care.
    The Olmstead decision requires States to make reasonable 
modifications in their policies and long-term services and supports 
(LTSS) so that people with significant disabilities can leave State 
institutions and nursing homes or not enter such facilities in the 
first place. Olmstead recognized that people with disabilities should 
have the choice of where they want to live and the services they need 
should follow them. Olmstead reversed a long-time trend of funding 
institutions and limiting choice to that option only. Since the 
Olmstead decision, an increase of about 1,100,000 people have benefited 
from HCBS without first becoming institutionalized, and about 300,000 
people have left institutions to live in homes and communities of their 
choice. These changes in policies are to a large degree, based on 
improvements in the Federal/State partnership in the Medicaid \5\ 
program administered by the Center for Medicaid and Medicare at the 
Department of Health and Human Services.
    \5\ Medicaid was created by the Social Security Amendments of 1965 
which added Title XIX to the Social Security Act. Medicaid is capped 
based on income and other personal resources.
    However, more changes in Federal policy readily can be made to 
allow States to implement increased changes that will increase the 
quality of life even more for people with disabilities. And Medicare 
\6\ can be modernized to reduce costs and provide for LTSS in home 
    \6\ In 1965 Congress created Medicare under Title XVIII of the 
Social Security Act to provide health insurance to people age 65 and 
older, regardless of income or medical history.
    Currently, services for institutional care are mandatory under 
Medicaid, but merely optional for States to cover when providing HCBS. 
Despite efforts to reduce institutional care or re-balance Medicaid, 
the program is still weighted in favor of institutional facilities, 
instead of providing these services to people with disabilities as they 
live in their homes and communities. Fifty-seven percent of Medicaid's 
long-term care funding goes to institutional care. Today, States must 
request from the Center for Medicaid and Medicare Services a waiver \7\ 
of the law through a complicated lengthy process to use funds for HCBS. 
This rationale is counter to the Supreme Court's Olmstead holding. To 
illustrate the point in real terms, today people with disabilities are 
entitled to go to a nursing home at an average cost of $62,750 per 
year. The same services, by contrast, can be provided in homes and 
communities at an average cost of $31,341 per year.\8\
    \7\ States have several options for funding HCBS--the HCBS waiver 
(section 1915(c)), the HCBS State plan option (section 1915(i)), the 
Community First Choice (CFC) Option (section 1915(k)), and the section 
1115 Demonstration waiver. The 1915(c) waiver is only available to 
individuals who qualify for an institutional level of care. Under this 
waiver, States can cap the number of eligible people, keep waiting 
lists, and limit services to certain geographic areas. Additionally, 
States must apply for renewal of the waiver from Medicaid which is a 
complex and lengthy process. The 1915(i) State plan option allows 
States to provide any number of HCBS to individuals before they need 
institutional care.
    \8\ See page 55 of Medicaid Managed Care for People with 
Disabilities: Policy and Implementation Considerations for State and 
Federal Policymakers, National Council on Disability, (www.ncd.gov), 
March 18, 2013.
    However, there is a cost savings solution to part of the problem. 
Stated simply, Congress could re-balance Medicaid's LTSS funds by 
equally funding nursing home care and HCBS at a 50-50 percent balance. 
This would give a 7 percent increase in HCBS without increasing 
appropriations from either State or Federal dollars. This step would 
modernize the nearly 50-year-old Medicaid LTSS system. This shift away 
from a bias toward institutional facilities to creating greater options 
for community living would also significantly improve the lives of 
millions of people with disabilities and their families--a cost savings 
with important and long-term rippling positive results for every 
    Senators, I am an example of the ADA. I have a significant 
disability. I graduated from college, graduate school, and earned a 
doctorate from Vanderbilt University, and I paid my own way. I paid off 
my student loans and rose to the rank of career senior executive 
service and served as a political appointee. I learned that the 
complexities of living with a disability required me to become an 
expert in planning for the fact that I would one day need LTSS. I saved 
a monthly percentage of my income for the time I would need to pay for 
LTSS. I am now at that time. I spend more than $4,000 per month in 
supports to remain in my home. Although I spend $4,000 per month I have 
no support services after about 7 p.m. weeknights, and no weekend or 
holiday assistance at all. The compliance process for directly hiring 
support staff is too complex and regulated to the point that I cannot 
manage all the Federal laws to avoid a tax audit or other employment 
regulatory barriers. The current tax structure does not allow 
deductions until I reach the Internal Revenue Services' medical 
deduction threshold. I, like many people with disabilities, was never 
eligible for long-term care insurance because my condition was 
considered pre-existing. Further, I cannot use Medicare because I am 
not eligible without first going to a 3-day stay at a hospital each 
year--by the way, I have not had an overnight stay in a hospital in 
more than 30 years. I have turned down a college presidency, 
promotions, and liquidated assets in attempts to simply hire in-home 
support services. I cannot access my retirement funds without 
substantial penalties to use for LTSS. I have been encouraged to 
declare bankruptcy by several program administrators as the only option 
to become eligible for LTSS. I spend countless hours each month 
tracking every expense to manage the tax system to remain independent.
    I speak with many families and young adults with disabilities 
capable of pursuing college degrees, wonderful careers, and 
opportunities to become significant contributors to society and lead 
independent lives. It is difficult to explain that working hard leads 
to a lifetime of ineligibility to actually remain independent and that 
the current system, although not intentional, supports choices that 
lead to poverty, purposeful unemployment, and forced institutional 
    Olmstead continues to move positive change for our Nation. The time 
has come to re-evaluate our system of providing long-term supports and 
modernize the system to encourage more independence especially for the 
millions of young Americans with disabilities to successfully 
contribute to their communities rather than live in poverty simply to 
have services.
    While many doors have been opened, the lack of access to services 
and supports that allow people with significant disabilities to live 
and work independently while achieving even a modest level of economic 
security has hindered the progress that might otherwise have been made. 
For example, allowing States flexibility in a wavier program to create 
a risk pool for the only 2 percent of people who are ever expected to 
use LTSS with flexible criterion allowing people with disabilities to 
remain gainfully employed and advance in their careers would be one 
option that decouples the need for LTSS from the healthcare paradigm--
this is not healthcare, it is support services like a worker helping a 
disabled professional dress for work every morning. Participation in a 
risk pool if CMS gave the State flexibility to design the program to 
promote gainful employment would be an option worth further analysis 
that could result in millions more Americans returning to higher paying 
careers if they could have some minimal hours of support at key times 
of the day.
    I am prepared to discuss more specific detailed policy issues to 
increase access to independence, employment, increased access in the 
community, and ways to allow States greater flexibility to progress 
further and modify outdated policies that will fundamentally alter the 
lives of millions of Americans with Disabilities.
    Thank you for the opportunity to appear before you today.

    The Chairman. That was very eloquent. Thank you very much, 
Dr. Justesen. That was very eloquent.
    Now we'll turn to Ms. Robertson-Dabrowski.


    Ms. Robertson-Dabrowski. Good afternoon, Chairman Harkin 
and committee. I thank you for the privilege of allowing me to 
come here and share my testimony.
    My name is Norma Robertson-Dabrowski. At the age of 16, I 
was in a car accident which left me as a quadriplegic. I lived 
at home with my mother for a year until my mother had to have 
surgery. My mother asked my physician at the time what services 
could I get provided with to continue to live at home in the 
community, because she was no longer able to take care of me. 
My doctor referred me to a nursing home. I was very unhappy. I 
was the youngest person residing in the nursing home at that 
    I met a support coordinator from Resources for Living 
Independently at that time who came out and told me that I was 
eligible to receive services because my disability happened 
before the age of 22. Under the Omnibus Budget Reconciliation 
Act of 1987, anybody who had their disability before the age of 
22 would be eligible to receive services to transition out of 
the nursing home--only those who had the disability before the 
age of 22. So lucky me.
    At that time, I met a support coordinator from Liberty 
Resources in 1991. I was able to transition out of the nursing 
home into my own apartment. In 1996, I was hired at Liberty 
Resources as a support coordinator to transition consumers out 
of the nursing home like myself.
    Today, I am a nursing home transition administrator who 
assists nursing home consumers like myself to transition to the 
community, where, proudly, I am a wife, a homeowner, and a 
godmother of two children. Currently, I've been working at 
Liberty Resources for the last 18 years. So let me say that 
again--for the last 18 years, doing what was done to help other 
people move out as myself.
    During the time of my transition, again, because I was 
eligible to receive services from the OBRA, a lot of people who 
had their disability after the age of 22, such as a traumatic 
brain injury, stroke, were not eligible to transition out. So 
they were left in a nursing home until after Olmstead was 
passed. There were other additional funding to help people move 
out with all types of disabilities, as long as they met the 
waiver requirement.
    If you are over the income limit, you are not able to move 
out. Fortunately, with Olmstead being passed, now a person is 
able to go file a complaint with the Office of Civil Rights and 
even file a class action suit to be able to transition out in 
the community where they want to be.
    Since the Olmstead decision, the number of nursing home 
transition referrals has increased through our agency. Prior to 
that, we would have to advocate with consumers against their 
families or nursing home staff because they felt the consumers 
were not those types of people who wanted to or could move out 
into the community because they required so-called 24-hour 
    Now, since the Olmstead decision, the referrals have 
increased. Families are choosing to have their loved ones live 
at home with the services and supports they need to live 
independent and productive lives in the community instead of 
placing them in nursing homes under the false pretense that 
they will receive 24-hour care.
    I would like to conclude by saying Olmstead was a landmark 
Supreme Court decision, but we need more. We need to end the 
detrimental and costly institutional bias and mandate the 
freedom of seniors and people with disabilities to choose to 
receive community-based services. Costly nursing home placement 
should be a choice of last resort rather than an automatic 
    Again, I thank you for letting me come here and give my 
    [The prepared statement of Ms. Robertson-Dabrowski 
            Prepared Statement of Norma Robertson-Dabrowski
    Good morning Chairman Harkin, Ranking Member Alexander, and members 
of the HELP Committee. It's an honor to be here talking to you this 
morning. I thank you for the opportunity to speak to you and share my 
personal testimony. My name is Norma Robertson-Dabrowski and I am the 
administrator of the Nursing Home Transition (NHT) program at Liberty 
Resources, Inc. (LRI), the Center of Independent Living in 
Philadelphia, PA. In 1982, I was in a car accident which caused my 
quadriplegia. For a year after the accident, I lived at home with my 
mother, who later needed to have surgery and was unable to care for me 
at home. When my mother asked my Doctor for assistance, I was referred 
to a nursing home, where I lived for 7 years. The loss of mobility made 
me quite angry and depressed. My family remained very supportive of me, 
yet I still didn't want any part of living in a nursing home. I had 
great difficulty adjusting to my new physical limitations as well as 
the institutional structure. In 1990, I was introduced to a Support 
Coordinator from LRI who informed me that because I received my 
disability before the age of 22, under the 1987 Omnibus Budget 
Reconciliation Act (OBRA 1987), I could choose to transition from the 
nursing home to the community. LRI helped me transition from the 
nursing home in 1991. In 1996, I was hired to work at LRI as a Support 
Coordinator. Over the years, I have been promoted to several different 
positions. Today, I am the NHT Administrator who assists nursing home 
consumers just like myself transition to the community, where proudly I 
am a wife, home-owner, and gainfully employed.
    I am a living example of true community integration. When I 
transitioned out of the nursing home in the early 1990s there was no 
Olmstead decision. LRI Staff went into nursing homes to visit Consumers 
who acquired their disability before the age of 22. Under OBRA 1987, 
Consumers were able to receive services that would assist them with 
transitioning to the community instead of expensive and isolating 
nursing homes. Some Consumers wanted to transition and others chose not 
to transition at that time. Staff had to go back and visit the 
consumers every year. Many Consumers change their minds and decided to 
transition to the community. Unfortunately, OBRA 1987 did not cover 
persons who may have acquired their disability after the age of 22. 
Persons who may have had a stroke, amputees, or traumatic brain injury 
were not covered under OBRA 1987.
    With the Olmstead decision of 1999 things are much different. With 
the Minimum Data System (MDS), if individuals indicate in the first 30 
days of nursing home placement that they would like to move back home 
or transition to the community, their names are entered on the Front 
Door Information System List (FDIS). A NHT Agency visits the individual 
and asks them if they would like to transition to the community. If the 
individual chooses to transition, there are NHT Funds to assist with 
the security deposit, moving expense, set-up fees, furniture, etc. 
Unfortunately, there are no funds to help a person obtain the necessary 
documentation to fill out housing applications. The individual needs 
three pieces of ID: picture (non driver's license), birth certificate 
and social security card. If a person has a home prior to being 
admitted to a nursing home, there are no funds to hold the apartment or 
pay rent.
    Prior to the Olmstead decision, nursing home consumers who did not 
meet the waiver requirements such as income limit had no other choice 
but to stay in a nursing home. Under the Olmstead decision, an 
individual can file a complaint with the Office of Civil Rights and 
even file class action suits so they can transition from the nursing 
home. Since the Olmstead decision, the number of NHT referrals has 
increased. Prior to the Olmstead decision, NHT Agencies would have to 
advocate with Consumers against their families and the nursing home 
staff for consumer's choice to transition. Since the Olmstead decision, 
families are choosing to have their loved ones live at home with the 
services and supports they need to live independent and productive 
lives in their communities instead of placing them in nursing homes 
under the false pretense that they will receive 24 hour care.
    Olmstead was a landmark Supreme Court decision, but we need more. 
We need to end the detrimental and costly ``institutional bias'' and 
mandate the freedom of Seniors and people with disabilities to choose 
to receive community-based services. Costly nursing home placement 
should be a choice of last resort rather than an automatic placement.

    The Chairman. Thank you very much. You're all very 
eloquent, and thank you very much for telling us that personal 
    Ms. Godwin.

                    MARYLAND, BALTIMORE, MD

    Ms. Godwin. Chairman Harkin and committee, it is an honor 
to be here. Thank you. I'd like to think that I represent an 
enormous amount of people that believe Olmstead affects 
institutions and nursing homes but also affects the community 
services that are provided outside of those.
    For half a century or more, people with disabilities and 
their allies have demanded community living. Yet many people 
with disabilities are still removed from their communities in 
the name of treatment. Many of these people hope to return to 
homes or start new lives but are told they're not allowed to do 
so until they reach a certain skill level or meet a particular 
standard of behavior. And, again, this goes for institutions, 
nursing homes, and some of the community services that are 
    This is not a test that we impose on people without 
disabilities before we allow them to choose their living 
situations. Yet despite ongoing advocacy, despite agencies 
implementing what we call best practices and state-of-the-art 
programming and facility building, countless people with 
disabilities are not living as real citizens in their 
    It's popular to think about person centeredness and 
community living as a philosophy. However, it's past time to 
execute the delivery of services in that way. People with 
disabilities of any level, like anyone else, want and are 
entitled to live in neighborhoods of their choosing, homes of 
their choosing, with schedules and relationships of their 
choosing. People want to hire their own staff, and they want to 
decide where their services come from and if they want 
services, or if they want services without an agency in charge.
    Shared Support Maryland has been in business for almost 8 
years and offers fully inclusive, person-directed supports and 
partnerships with people, their families, and other allies. We 
are fewer than 100 agencies like this in the United States. Our 
organization offers the same service types as other 
organizations--residential, habilitation, employment, support 
    We offer support to people with fragile medical needs, with 
significant behavioral challenges--excuse the labeling--and 
with severe and profound intellectual disabilities. We use the 
same funding sources available to all providers and 
organizations and have found ways to offer personally driven 
services and/or individual supports to people we support.
    We see people as partners in leading the organization. We 
are not an administration of experts who have years of 
experience but lack the experience of someone with a 
disability. Together we tackle the areas of any organization 
and system--service delivery; staffing management processes; 
ownership, control, and power; organizational design and 
structure; quality assurance; and compliance. We work to 
promote self-determination. We view people with disabilities as 
competent who deserve to have control of their lives and, 
because of that, behavior changes.
    Housing is separate from services. This is paramount for us 
and paramount for people. This helps people not have to make 
the decisions between services and housing. So if they need to 
fire Shared Support, they don't lose their home. We don't co-
sign leases, and we don't own homes to lease back to people.
    People interview, select, and manage their own staff. They 
have their own individual budgets. Monthly meetings and quick 
and frequent touching and face-to-face time with people result 
in accountability for us. People choose with whom they plan and 
spend time.
    We believe that any agency can move further into 
personalized and individualized supports to make community 
living a reality. It means a lifetime of changes, challenges, 
and successes for everyone, and, most importantly, for the 
people who have chosen us to provide their support and 
    Thank you.
    [The prepared statement of Ms. Godwin follows:]
                   Prepared Statement of Gail Godwin
    For half a century or more, people with disabilities and their 
allies have demanded community living. Yet many people with 
disabilities are still removed from their communities in the name of 
treatment. Many of these people hope to return to their homes or start 
new independent lives, but are told they will not be allowed to do so 
until they reach a certain skill level or meet a particular standard of 
behavior. This is not a test that we impose on people without 
disabilities before we allow them to choose their own living 
situations. Yet despite ongoing advocacy, despite agencies implementing 
``best practices'' and ``state-of-the-art'' programming and facility 
building, countless people with disabilities are not living as real 
citizens in their communities.
    It is popular to think about person centeredness and community 
living as a philosophy, however, it is past time to execute delivery of 
personalized services to all people with disabilities in the real 
community. People with disabilities of any level, like anyone else, 
want and are entitled to live in neighborhoods of their choosing, homes 
of their choosing, with schedules and relationships of their choosing. 
People want choices in hiring their staff, where services come from, 
and whether they want to use an agency or an individualized method 
without an agency.
    Shared Support Maryland, Inc. has been in business for 8 years and 
offers fully inclusive, person directed supports in partnership with 
people with disabilities, their families, and other allies. We are one 
of fewer than 100 agencies in the country like this.
    Our organization offers the same service types as other 
organizations: residential, habilitation, respite, employment and 
support brokering. We offer support to people with fragile medical 
needs, with significant ``behavioral challenges,'' and with severe and 
profound intellectual disabilities. Shared Support Maryland uses the 
same funding sources available to all organizations and has found ways 
to offer fully person-driven and/or individualized supports to the 
people we serve.
    Shared Support Maryland sees people with disabilities as partners 
in leading the organization. We are not an administration of experts 
who have years of experience in the field but lack the life experience 
of someone with a disability. Together we tackle the areas of:

     Service delivery;
     Staffing management processes;
     Ownership, control and power;
     Organizational design and structure; and
     Quality assurance and compliance.

    We work to promote self-determination. We view people with 
disabilities as competent people who deserve to have control of their 
lives and, because of that, behavior changes. Housing is separate from 
services. We do not co-sign leases or own property that is leased back 
to people. This is paramount and by not doing so we eliminate the 
possibility of a person choosing to change services and losing their 
housing. People interview, select, hire and manage their own staff. 
People have individualized budgets. Monthly meetings result in high 
accountability. People choose with whom they plan and spend time.
    Any agency can offer and provide services so that community living 
is a reality. It means a lifetime of changes, challenges and successes 
for everyone and most importantly for the people who have chosen our 
agencies to provide them with services and support.

    The Chairman. Thank you very much.
    We'll turn first of all to Mr. Thornton and then--well, I 
don't care. You make that decision. All right. We'll turn to 
Ms. Thornton first.
    Go right ahead, Ms. Thornton. Thank you very much. Proceed, 
and then we'll turn it back to your husband.


    Ms. Thornton. Good afternoon, Senators. My name is Donna 
Thornton. I work at Walter Reed Medical Center. I've been there 
23 years, and I have a testimony to tell.
    I used to live in Forest Haven when I was a little girl. I 
had a place that I always wanted to go to, and it was my swing. 
I always swung on my swing and asked God to help me through my 
way. So I asked him--I said, ``God, I want to say some things 
to you.'' From the first time, I asked, ``How can we get out of 
the institution?''
    Somebody said that we have to work our way up. And I asked 
this person, ``Well, how can you work your way up?'' They said, 
``You know, you have to go from the bottom on up top.'' I said, 
    After that, I asked another question to Him. I asked my 

          ``There's a couple of things I want to ask you. I 
        want to get married and--first, I want to get out of 
        the institution. I want to get married. I want to have 
        some children.''

    Then I asked Him, ``Can we all get out of the institution? 
Can everybody get out of the institution?''
    I have a son. His name is Ricardo Thornton, Jr. He 
graduated from high school. He didn't get to college, but I was 
praying for him to go to college. Now, he's married. He has 
three kids. One is Daniel. He just turned 10. And we've got one 
little baby girl. Her name is Lia. She is 1 year old. And we 
have a 2-year-old baby girl, and her name is Rita Rae.
    I hope that I can see them grow up and go to college, 
because I didn't go to college. But I want to see them go to 
college, just like everybody else.
    Thank you very much.
    The Chairman. Thank you, Donna.
    Mr. Thornton.


    Mr. Thornton. Good afternoon, Mr. Chairman and members of 
the committee. Again, my name is Ricardo Thornton, and I am 
also a former resident of Forest Haven. I was just looking over 
some of this and picking out some spots here, but I think what 
I'm going to do is close this up a little bit and just speak.
    My wife and I both lived at Forest Haven. We got out and 
moved into the community. But while I was there, I had a sister 
and I also had a brother who also lived at Forest Haven. The 
thing that was so hard to believe was we were family. I had no 
idea who they were--had come out of another institution, and 
this was the institution that would be the final institution.
    We grew up there, and one of the things I had to learn--I 
didn't make choices. You didn't have choices. You follow. You 
follow the rules. If you didn't follow the rules, you get 
punished. There were a lot of things that we didn't like. We 
had good staff and we had bad staff. We had good days and we 
had bad days. We had days we wished we could just get away, run 
away--but not understanding why people were so mean and not 
    But we found out that a lot of the staff that worked with 
us just wasn't trained. They just looked at us as--that's a 
warehouse. They're labeled. This is what we do day in and day 
out. Once you have that label on you, that's it. But we were 
able to see--I was able to see my brother finally and show me 
some love, because we had family visitors that came out. I 
didn't know them. I still had to get adjusted to that.
    My sister died at that institution because of an overdose--
behavior. The only way that they controlled her at that time 
was with medication. She was about 20--she was in her 20s. But 
they told me not to worry. ``It's not your problem. It's a 
heart attack. We're just going to let it be at that.'' But 
these are things that happen in institutions.
    When I call them dark days--you never know. You just don't 
want to see those things happen. We thought the training really 
should have been--but it wasn't. For her, I determined I would 
do more advocating when I got out and make sure that people 
will leave institutions and not be put in places like that.
    You had cottages. They had cottages where I can go. They 
had cottages where people were isolated that didn't have a say. 
To break that barrier where we felt that they should be 
included was through that Olmstead and all those advocating for 
us for change.
    When we left Forest Haven and moved into the community, we 
were happy, because we had left the place. We were going to 
have freedom. We were going to have a little more love. We were 
going to have say. We found out that it was an adjustment. 
People weren't ready for us. They didn't want us to live next 
door to them. We were a problem that no one wanted to deal 
    But through all the advocacy and speaking up and telling 
our story, they found out we weren't that bad. My wife here 
proposed to me, Mr. Chairman. She proposed to me. She had moved 
into an apartment, and I was still in a group home, and we 
would travel back and forth. She proposed, and we thought about 
a marriage, and they were against it. They were like, 
``Marriage?'' They were not for it. In other words, we just 
wasn't ready at that time.
    This is a picture, Mr. Chairman, I was going to show you of 
the marriage that took place, where we invited people to come 
out to see people with disabilities actually living lives just 
like everyone else. This is in 1984.
    And this is my son, who actually graduated from high 
school. The story with him was that he was a two-pound, 11-
ounce baby boy. The odds were against us with raising a child, 
because they said, ``You two come out of an institution. 
There's no way in the world you can do it.''
    But they didn't know that there was something that we knew 
that they didn't know, and that was we have a lot of support 
people here in the community that offered to support us--got 
him in Head Start, got him in elementary, and he's graduated 
from Calvin Coolidge now. So he now has his own little family, 
which is beautiful.
    I'm saying all this to say I'm talking about the past, the 
present, and the future--is what we're here today to talk 
about. This is where I'm really concerned. I noticed you were 
talking about the Medicaid waiver. We have habilitation 
services. We have in the district a block that sits between--I 
don't know why this block is there, but one day I hope it gets 
    Some of the people can get RSA and are eligible. But those 
that come out of institutions that want to get RSA--sometimes 
there's a block there that they can't get it for some reason. 
And they want jobs. They want to work. They want opportunities. 
I'm just thinking on how we can maybe look at some other way of 
opening up that door, to move that block.
    I know it can be moved, because as we celebrate Olmstead's 
15 year anniversary, it can be moved. It's just going to take a 
lot of advocacy and working with the Senators to find some way 
to do that.
    In closing, I'm encouraging us to continue to--I have seen 
many who are in group homes and moved into apartments, and I 
can't tell you how happy they are that they now have a voice. 
They have a choice. They're riding Metro. They're choosing what 
their--providers are stepping back now and letting them choose. 
So I see us waking up a little bit. But I still think we need 
more, as more institutions are still advocating to keep them 
open. I want to see them closed. But stories like Donna and us 
turns that around.
    One thing I want to say that Donna didn't say was when her 
son was born, she asked her doctor--two pounds, 11 ounces--she 
asked her doctor, ``Doctor, will my baby love me?'' And the 
doctor said, ``Yes, he will love you.'' ``No, Doctor, will my 
baby really love me? Look at my abilities. Will he love me?'' 
Today, he's graduated with the support of our services that we 
have. Today, he's graduated with the support, that we can 
advocate and tell our story.
    Back in the day, we could not sit here in front of the 
Senate and tell our story and think we're going to go back to 
that institution and be safe. That's unheard of. I'm just 
saying it to say it's a story, and we need more stories.
    Thank you, Mr. Senator. I could go on and on and on, but 
thank you. Thank you, Mr. Senator, for your support.
    [The prepared statement of Mr. Thornton follows:]
                 Prepared Statement of Ricardo Thornton
    Good afternoon Mr. Chairman and members of the committee. My name 
is Ricardo Thornton. My wife Donna and I are both are here to testify 
on where we've been. We're here to talk about the past, the present, 
and the future.
    We both lived in institutions all our lives. I lived in DC Village, 
then I moved to Forest Haven. At the institutions, you had good staff, 
and you had bad staff. People working with us didn't know the type of 
services that we really needed. Being in an institution felt like I was 
doing time for a crime I didn't commit. We hoped one day we'd get out 
of the system and be like everybody else.
    At Forest Haven you didn't control your own money, so if you got 
paid for a job, you had to turn in your money. We tried to cash our 
check once. The punishment was, if you cash your check, you don't get 
your allowance.
    One of the things I learned down at the institution was I had a 
brother and a sister. They were there waiting for me. I was a little 
hesitant because I didn't know my family then. But then I got to meet 
them. My brother was always withdrawing from me because he didn't know 
who I was at the time. My sister was always happy because she knew she 
had a brother now who would look out for her. My sister passed away at 
the institution at one of the cottages. They said it was a heart 
attack, but I know it was something else. I think more likely she died 
of an overdose of medicine. To control her they would keep her drugged 
like a zombie. When that happened, I told myself I would advocate for 
change, so hopefully no one would have to live in an institution.
    Moving into the community was a challenge. It's an adjustment. The 
rules were still with us. We thought we would be more independent, but 
group homes have their own style. At some group homes, you didn't have 
choices. Now, we have choices.
    After I left the institution I was appointed by the Mayor to serve 
on the de-institutionalization board. The board served to monitor group 
homes in the community and make sure everyone was safe. We were not 
satisfied until everyone in an institution had moved out safely.
    My wife and I both work within our community. I work at the Martin 
Luther King Library. November will be my 36 years. We used to live in 
our apartment. We now live in a new home. We have walk-in supervision. 
You don't have anybody standing over you saying ``do this, do that.'' 
You're pretty much independent.
    I serve on the DD council board, the State planning council. I'm 
the vice chair of that board. I also served on the Mayor's committee 
and I'm active on Project ACTION! Self-Advocacy and a number of 
coalitions. I'm also very active in Special Olympics. I had a chance to 
go to South Africa and be part of the leadership training over there. 
It was very educational for me.
    We have one son, and when he was born there were questions about 
us, can we really be good parents to him. They said, ``Maybe you may 
want to think about putting him up for adoption.'' And we had to 
convince and show them, with the support we had. We put him in Head 
Start, and after that he went on to school. He graduated from Calvin 
Coolidge High School in 2000. The trick was that we worked with his 
teachers. We asked for extra help in finding out what does he need to 
do. We had to show the people that said it couldn't be done, that it 
can be done. We're like any other parent--whatever we can do to help 
him, we do it.
    Today he's now 26. He has his own family. He's married with kids. 
They're happy. I have two pictures I want to show you. This picture was 
taken in 1984 when we went and got married. The odds were against us. 
We did it anyway. And in the next picture, we have the whole family. 
This is us and our grand kids. So that's the future.
    Where do we go from here, Mr. Chairman? We'd like to see more 
people living more independent lives in the community. Transitioning 
from school to work is getting better, but we still need a little more 
work. People with intellectual disabilities graduating from high school 
today, if they cannot think of what it is that they would like to do, 
their career choice, maybe give them some assistance and some ideas.
    I also want to talk about RSA rehabilitation services. Many are 
being promised jobs and some are getting them and some for some reason 
are not. There seems to be a big block that sits and I wonder if it can 
be moved so that many people who come through their doors can have the 
opportunity. Many people say they want to work and they're still 
waiting. Maybe we can come up with some kind of solution.
    Let's not look back at the institution as an answer. Let's look 
forward to the future.
    Thank you Mr. Chair for letting us speak here today, and we look 
forward to answering any questions.

    The Chairman. You're all just fantastic. Thank you very 
much. I was blown away by Ricardo a few years ago when he first 
testified, and I'm blown away again. You tell a very compelling 
story and a compelling life story, and you've paved the way for 
a lot of other people, too. Both of you have. You've been 
married 30 years now?
    Mr. Thornton. Yes. We're having our anniversary June the 
3d--it will be 30 years.
    The Chairman. Congratulations.
    That's fantastic.
    I don't know why we've taken so long to get to this point. 
Perhaps a lot of us thought after ADA and after Olmstead, 
things would just happen. But a lot of times, things don't just 
    You talked about this, Dr. Justesen, that these old laws 
continue on, and in the new age, they've got to change with 
this. I think a lot of things also--you're talking about jobs. 
You can't imagine the number of jobs that are now open for 
people with all kinds of disabilities, intellectual 
disabilities, physical disabilities, maybe both, that were 
never there before because of technology, which we didn't have 
in those days.
    Some of the new technologies are fantastic in terms of the 
small amount of support that someone might need to do a job. 
Transportation--we've got that pretty much worked out. But now, 
seeing the technology, we have to get people out of 
institutions into their own settings where they can take more 
control of their lives. There's a lot of technology that helps 
do that, too. We just didn't have that in the old days when we 
passed those laws. So these laws have got to be changed to be 
adaptable for the present situations.
    The other thing that's been frustrating to me is, as 
Senator Alexander said, that we know it's cheaper, and people 
have got the data to show that. For example, a person in an 
institution may be covered with all kinds of services and stuff 
which he or she may not need. They may just need one or two, 
but they get all of this other stuff that they don't need. So 
why not let them live in the community and get the one or two 
support services they need without spending money for all that 
other stuff.
    Hopefully, we can start to make these changes in our 
Medicaid laws that we talked about. But I'm hoping that a lot 
of these stereotypes start breaking down.
    Ricardo, you said that sometimes the staff are good and 
sometimes they're bad in these institutions, and they don't 
have much training. So how about when you're on your own and 
you're out living in the community--I ask that of everybody 
here--how do you decide who's good staff? I mean, how do you 
know if you've got someone that's good? I mean, are you able to 
control that and make sure you get someone with good training? 
That's just a question I have.
    Mr. Thornton. I know with us, we're in a program called 
Community Multi-services, where we have walk-in supervision. 
And with the walk-in supervision, we have choices now. They 
don't just come in an watch over. They actually give us a 
chance to ask questions and things on what we would like.
    The Chairman. It's like an interview.
    Mr. Thornton. So it's like--yes. It's more like a relief. 
Right, Donna?
    Ms. Thornton. It's a relief. It's very good, you know. You 
can talk up for yourself, or if you see something wrong, you 
can ask questions.
    The Chairman. Ms. Robertson-Dabrowski.
    Ms. Robertson-Dabrowski. Through the services and receiving 
them in your home, you have a choice. You can hire your own 
attendant or go through an agency model.
    The Chairman. I'm sorry. Say that again.
    Ms. Robertson-Dabrowski. I said you can hire your own 
attendant or go through an agency model. If it's an agency 
model, then the agency is responsible for doing the training. 
If you hire your own person, then you're responsible for doing 
the training. And, again, it is a choice. If one person doesn't 
work out, you go to the next. People are people.
    The Chairman. Is there any one better than the other? I 
suppose both have pluses.
    Ms. Robertson-Dabrowski. Under the agency model, there's a 
lot of restrictions. They're not able to do certain things. If 
you hire your own attendant, that attendant is required to 
assist you with what you need.
    The Chairman. Ms. Godwin.
    Ms. Godwin. Maybe a hybrid of that. Our organization 
supports people in a couple of different ways through the 
funding, so there may be some different rules. However, one of 
them is an opportunity for you to be the employer of record as 
a person receiving services. The other is you're not, and we 
would be the employer of record. However, the hiring always 
starts with the person.
    We do a very specific hiring plan with the individual to 
match interests, character. Skills and training is actually the 
last thing that we match. CPR and first aid and medication 
training is not as important, although necessary, as it is to 
match personality and interests for people.
    People are involved in making advertisements to place in 
papers or wherever they choose to post. All of their screening, 
interviewing, hiring, and managing the staff is through 
    The Chairman. One thing I keep thinking about is that as 
we, hopefully, get deinstitutionalization and people in 
communities, I want to make sure that people who are providing 
supports and services are qualified, and that you, the people 
who are living in the community with disabilities, have the 
final say, not somebody else saying, ``No, you've got to take 
this person or that person.'' There's just simple things like 
personality conflicts, for crying out loud, that can happen, 
you know, just things like that.
    That's one thing that just keeps nagging at me, how we make 
sure that they're qualified, they're trained to fit the 
individual's needs. One person's disability is not another 
person's. One person's need is not another person's. So whoever 
is providing that support and those services needs to 
understand that person and their needs, which may be different 
than somebody else's.
    I'll just ask this. Do we have enough different agencies 
out there that are training people that can fill this kind of a 
pipeline? I assume there are private agencies out there and 
non-governmental perhaps. I don't know--church groups.
    Mr. Smith. Just going off my own experience, when I was 
younger, the waiting list for a worker can sometimes be 
incredibly daunting. So that's why we had to go to a family 
member, because we could get a worker much quicker through that 
process by having my sister trained to do respite, as opposed 
to getting a respite worker through an agency.
    Of course, that carries with it certain problems, in that 
the burden sometimes can be placed on the family to the degree 
that, as somebody with a disability, I wouldn't choose. It's 
more difficult to have self-directed care sometimes. As 
wonderful as that care may be, there's a certain level of 
independence and dignity that comes with getting care from 
somebody outside of your own family and somebody you've chosen. 
And, unfortunately, that option isn't always as readily 
available as a family option.
    The Chairman. I think that's another thing. I think that 
there's this thought that, ``Well, if someone was not in an 
institution and they were at home, their family is taking care 
of them. Don't bother that. Just let it be.''
    That sounds nice until you realize that a lot of times, 
these family members have to do other jobs and work, too, and 
they've got to make a living. But they do it because it's 
family, and you do that. I cherish that. But I don't know that 
that's the answer, because, like I said, they have their own 
individual lives. They may have to get out and work, too.
    I'm taking all the time here.
    Senator Alexander.
    Senator Alexander. We have different hearings here, and I 
have to go to another one. But I just wanted to say before I 
leave how much I appreciated what each of you had to say and 
how really human it is to me to hear you say it personally.
    Mr. Justesen, I would be interested if you would like to 
send Senator Harkin and me after the hearing any suggestions 
you have, or any of you have, specifically, for how we can 
relieve Medicaid's bias toward institutions and what steps we 
could take. You mentioned changes in the law. What steps should 
we take in the law to do that? I would welcome that, 
particularly based upon your study of it.
    The Chairman. Dr. Justesen, to followup on that, you talked 
about the rebalancing of long-term services and support funding 
ratio in favor of home- and community-based services. I got 
that. But are there other changes in other Federal statutes 
that would further support provisions of these types of 
community-based services for people with disabilities? Is there 
something I'm not seeing? Is there something else that we 
should be looking at? I always worry that sometimes we get 
focused on one thing, and there's other things out there that 
we may not see.
    Mr. Justesen. Your staff behind you have worked with me for 
years. So they're all about to panic because they know a 
Troyism is coming out. I'm going to offer a few thoughts that 
are completely in a different direction but I think have 
contributions to make that fundamentally improve the lives of 
people with disabilities.
    The majority of people with significant disabilities 
receive social security disability insurance, and they want to 
go back to work. They're afraid of going back to work because 
they will lose their Medicaid. They need that support. The 
substantial gainful employment amount of money that a person 
can make each month right now is $1,070. If a person were 
blind, their deduction is $1,800 a month.
    It is interesting that we make a distinction in that area. 
In other words, if I were a person receiving social security 
disability insurance, and I had the extra $630 a month, that 
would make a substantial difference. That doesn't sound like a 
lot of money. But that makes a substantial difference in the 
opportunity to be even more independent and retain the basic 
foundation of Medicaid.
    I'm only speaking in my opinion, Senator, and only in my 
experience, which is not--it's just limited. But the 
opportunity to have that little bit of extra income for people 
with physical and intellectual disabilities, the same as people 
who happen to be blind, would make a substantial difference in 
the lives of many people that I know who have physical and 
intellectual disabilities.
    Let me follow the line again and suggest this. A standard 
deduction on taxes for one group of individuals with a 
particular type of disability, I think, is about $1,450. I 
could be wrong, but it's something like that. For all other 
groups of people with disabilities, there is no standard 
deduction available. That would make--that's $1,400.
    But that means--I can tell you, Senator, in at least three 
cases I know of in a very small town in your State, by the way, 
would be a month's worth of attendant services for someone to 
be out of an institution. Add that to an extra $600 and 
something a month, and that would create the independence of 
many people with disabilities while they could maintain their 
current Medicaid coverage.
    The Chairman. You're right. I knew about the $1,070. I 
didn't know about that difference, and I didn't know about the 
standard deduction. Thanks for bringing that to my attention. I 
didn't know that. I learn something new at these things.
    Yes, Donna?
    Ms. Thornton. Yes, Mr. Chairman.
    The Chairman. Can you pull the mic in? My hearing is not 
the best right now.
    Ms. Thornton. Mr. Chairman, I have a question. I would like 
to ask you a question. Forest Haven is not the only one that 
closed. I would like to have--I know it's up to the parents or 
it's up to the judge.
    I would like for them to close the institutions, and if 
people want to, they have their own choice. This is what I'd 
like to have. I would like to have them to go out into the 
community just like us and start on their way. Whatever they 
want, I would like to have that, to close all of them.
    The Chairman. Your question probably is why aren't we 
closing them down. And that's a good question.
    It's still an attitudinal thing about institutions. It's 
attitudes that people have, and it's hard to change those 
attitudes. I think someone said it in their testimony about how 
people first of all--it's like anything. What you're not used 
to and what you're not around, maybe you get afraid of.
    I can't tell you how many people back in the early 1980s 
when IDEA was first getting--and late 1970s--it was called the 
Education of all Handicapped Children Act at that time. I 
remember when my daughter was in school, public school, at that 
time, and the first time a young child with a disability was 
brought into the classroom, a lot of parents got upset about 
that. This was something they'd never confronted before.
    The kids didn't seem to much to give a darn one way or the 
other. They were fine. It was the parents. But, you know, as 
time went on, and more kids with disabilities came into the 
classroom, and kids started associating with them, that breaks 
    I think the same is true in communities. A lot of people 
just think, ``Well, you know''--I mean, you've been through 
this. Every one of you have been through it. People say, 
``Well, you're not capable of doing this. You can't do this. We 
have to take care of you.'' It's that old attitude.
    A lot of that has got to be broken down. But you can't just 
wait for those attitudes to change. Laws that we do change 
attitudes. ADA started changing attitudes of people and how 
they looked at it. IDEA, when kids--grownups today--Emmanuel's 
age, his age, young people today that came through the ADA 
generation--they go to work. It doesn't bother them to work 
next to someone with a disability, because that's who they grew 
up with.
    Perhaps some of the people who haven't had that experience, 
and they--``I don't want them in my community. Keep them in 
institutions,'' and stuff. But I think to the maximum extent 
that we can change this bias, this bias that we have, and show 
people that with just sometimes modest supports and services, 
people live in our communities with their friends. They go to 
block parties when they have the block parties with their 
neighbors. It makes for a nice community.
    Who was it that said that? Integration is an American 
ideal. Oh, you said that. Yes, it is, integration of all 
people, not just racial integration, but age integration, 
religious integration, national origin integration, people with 
disabilities integration. That's sort of the American ideal.
    Mr. Thornton. What I just basically want to say is I found 
out when coming into the community, one of the things I decided 
to do was I went to a town hall meeting. I had some people that 
were in my group home, and we all sat in on a town hall 
meeting. They had no idea that we were the ones they were 
talking about.
    We were telling our story, that we work--the same story I 
told here today. I work at the library, and I'm happy with 
where I work. I'm happy to get a job, and I'm excited about 
what I have accomplished, and I live right here next door. They 
didn't have no idea that we were coming to this meeting.
    The meeting was about us, about our trash being put 
outside. But we wanted to--what I found out, Mr. Chair, was I 
think a lot of stories, success stories, are a big part of 
changing a lot of those concepts of those trying to come out of 
    It takes some of the stories of people who have been very 
successful and how you have a Senator who sits here and works 
very patiently and comes up with wonderful ideas on solutions 
to resolve some of the problems, like you and Ted Kennedy used 
to do, and a lot of things like that. I think those are the 
things we need--more of that.
    The Chairman. You just mentioned something I also want to 
bring up to all of you. Maybe I'll start with Emmanuel here. 
There is a saying. It's a statement made by some disability 
groups. I forget which ones. It says, ``Nothing about us 
without us.'' You've heard that, right?
    Mr. Thornton. Yes.
    The Chairman. You just touched on something very important. 
Why is it so important for policymakers, like us here or in 
State government or other places, when they start making 
decisions and policies about people with disabilities--why is 
it important to have people with disabilities in on the 
    Mr. Thornton. I agree.
    Mr. Smith. With me, agency is everything. Obviously, by 
virtue of my disability, I have to put my well-being and 
sometimes my dignity in the hands of other people for them to 
care for. If I have to do that, I want to be sure that I'm 
involved in that process of deciding who gets stewardship over 
things that are important to me.
    Whether it's a discussion on a national level, or whether 
it's being involved in the IP process, or whether it's being 
involved in the community integration process, when you include 
people with disabilities, you're affording them the ability to 
safeguard their dignity and their safety, more than anything 
else, for me.
    Olmstead makes me less afraid to pursue the kinds of things 
that you're looking for the ADA generation to move toward, like 
employment and living independently. Having that safeguard is 
incredibly important and having a role in a discussion makes me 
feel more secure as well.
    The Chairman. Yes, Ms. Godwin?
    Ms. Godwin. When ``nothing about me without me'' is your 
mode of operation, people don't say, ``I want an institution or 
a nursing home or a group home or a day program.'' They say, 
``I want a life that looks like any of the lives that we may 
have.'' When a provider listens to that, if a provider is 
chosen to provide those services, we have an obligation because 
we've asked, ``What do you want?'' to make it look as close to 
that as possible.
    That changes the nature of our service provision. It's very 
intense. It's very intentional. We don't look at things as 
supported employment, as residential. I use the word, service 
types, for a reason. Back in my testimony, it is not the kind 
of service we provide, but it is the mode in which we provide 
it in terms of funding. We organize it so it works. But when 
someone comes to you, and you continue to plan like that, and 
you're accountable to people, because it is nothing about them 
without them, you have to answer in a way that looks like what 
they've asked for.
    The Chairman. You mentioned in your testimony--and I think 
someone else mentioned it--maybe Ricardo did, too--about how in 
institutions, you have to meet certain standards of behavior or 
acquire particular skills, sort of like if you don't do that, 
then there's no hope you can live in a community or something 
like that. But how do you learn new skills if you're in an 
institution and people are not providing you the kind of 
education and support and training you need to get those new 
skills? It seems like you're just trapped.
    One thing I've thought about is that if people go out of 
institutions and live in the community, there are other things 
I think we're going to have to be focusing on in terms of job 
training, skills upgrading. I think maybe Senator Alexander 
mentioned--I think tomorrow, we actually may pass on the Senate 
floor a Workforce Investment Act reauthorization. It hasn't 
happened since 2003. We've been working on it for 5 years.
    We finally got it together, and the one part that I've 
worked on is upgrading the rehab act to provide for the kind of 
training and skills upgrading for people with disabilities when 
they're young so they don't get trapped in those kinds of 
situations, and to make sure that competitive, integrated 
employment is what's expected of young people with 
disabilities. You're expected not to go into sub-minimum wage, 
but you're expected to try and work and get competitive 
employment. That should be the first option. It shouldn't be 
the last option after years and years and years.
    Hopefully, we'll get this passed. It'll take a while to 
start getting it implemented, I understand that. But I guess my 
question would be--and I guess maybe I'm answering my own 
question. Which is better for skills upgrading and getting 
people the kind of training and stuff they need, institution or 
    Ms. Godwin. Non-institution.
    The Chairman. Probably, obviously, on its face, I suppose, 
not in an institution. Is that right? They would have better 
access to programs out there for training and skills upgrading. 
Maybe there's some more things we have to do.
    Mr. Justesen. I think the way I would answer your question 
is which institution? The same institution that the nondisabled 
kids go to--an elementary school. The same institution that the 
nondisabled teenagers go to--high school. The regular colleges 
and technical and community colleges--should be the same places 
that people with disabilities go to.
    Institutions are good. They've been good, historically. 
They work. A lot of them need to go away now. And the way in 
which we talk about institutional options should be the same 
options that people without disabilities go to--colleges, 
training programs, whatever else. Those are the types of ways I 
think we need to think about, how we give opportunities for 
people with disabilities.
    The other thing I think is important to kind of emphasize 
about making policy without me is that--and you know this. But 
you're looking at a group of people who live the most regulated 
lives in America. We are regulated about what time we get up in 
the morning; about how much we can make; about where we can 
live; about where we can go to school, any kind of school; 
about whether we have the independence to do anything. We are 
regulated more than anyone else in this room, more than anyone 
else within miles of the regulation generation institutions of 
this country.
    The problem for us is that we have learned from the history 
of how the country treats different classes of people, and we 
now need to be represented at all levels. We are not 
represented in the face of society in the ways that other 
groups have been able to achieve. We will achieve that, but it 
needs to start happening more frequently now. The leaders of 
many of our organizations don't reflect us. The policymakers 
don't reflect us. The leaders of our learning institutions 
don't reflect us. That will take some time.
    Until then, one thought to leave with you is that the idea 
about more programs or more ways to help might not be the best 
way for everyone to move in that direction unless we are part 
of that decisionmaking, or else we will just be over-regulated 
even further. And we're so regulated that I think for some of 
us--I'm one of them--it depends on whether I go to church, how 
I pay my taxes, how I'm audited, what I eat, who I live with, 
what I learn, what TV I watch.
    I'd just leave that word of caution, that more might be 
more without being an improvement. We're so regulated, I don't 
know how I'm going to manage another regulation dictating my 
    The Chairman. That's very good. I've never heard it put 
that way before.
    Ms. Godwin and then Ricardo.
    Ms. Godwin, go ahead.
    Ms. Godwin. Are you sure?
    The Chairman. Sure. Go ahead.
    Ms. Godwin. Part of what I mentioned before also was about 
best practice in programming, and I did not just mean that in 
facilities. I absolutely meant that in the communities. So to 
echo that, more programming and best practices does not mean 
better quality. It means more programs and more rules.
    To just watch our investments in the community-based 
programming that we talk about and listen to what people want 
versus the services we're very typically providing, because 
those are programs based on best practices.
    The Chairman. Very good.
    Mr. Thornton. I just want to say that--there are actually 
two. I just want to say the Medicaid waiver I was thinking 
about earlier--I know in the DDS here in the district, we have 
a Medicaid waiver when we had Judy, who brought in Laura Nuss 
who created this amazing program--how the Medicaid waiver is 
getting a lot of people out of group homes and more into 
community independent settings, which is really amazing.
    They have the personal setting where--that's where we're 
heading to, the personal setting. But I just wanted to say how 
the Medicaid is really--the waiver is really working. The other 
thing is institutions. If you're trying to find a solution to 
put people--how you say that--if you're trying to find a place 
to put people that you are fed up with, that the system is fed 
up with, to hide them, it's an institution.
    There are a lot of institutions, but you have to break it 
down to what institutions you are actually talking about. If 
you're talking about a community institution--but the 
institution I'm talking about is an institution where we store 
people and treat them like they are lost, and they are not. 
They have gifts. They have a lot they want to bring out. The 
question is who's going to bring it out of them. When they come 
into a community, we need to continue to open the doors and 
continue to advocate for that kind of change.
    That's basically what I'm saying. We have two different 
types of--when you're talking about institutions, like the 
Howard University. That's an institution. They're going to 
college. But we're talking about warehouses. We're talking 
about somewhere where we don't want people to go. We want to 
see them come out and live in the future and be part of a 
community and be successful. That's what I would love to see.
    The Chairman. I guess when I use that word, institution, my 
mind is thinking nursing homes, that type of institution. I 
wasn't thinking about colleges and things like that.
    Mr. Thornton. Oh, OK.
    The Chairman. But I understand. I mean, you're right. There 
are good institutions out there that do good things. I was just 
thinking about it in terms of the institutional structure of 
people with disabilities going in nursing homes. That's what I 
was talking about. So I didn't make myself clear.
    One thing I want to bring up is that some people say that 
the most severely disabled cannot be served through a program 
like this. So is person-centered planning only for certain 
people with disabilities, or is it for everyone? How do you 
create a person-
centered program for someone who has severe intellectual 
disabilities or multiple disabilities or limited speech, 
complex access needs?
    Do we need to start delineating--not delineating--
separating people out because of their disabilities? How about 
people with complex disabilities? Are they better off in the 
community than they are in a nursing home institution?
    Ms. Godwin, you've dealt with that.
    Ms. Godwin. Way back when, maybe another half a century, 
kind of like that--I don't know if that's how old everyone is. 
But person-centered planning came about because of people that 
you described that lived in institutions. We've heard of people 
that had severe reputations--some of the lingo and language 
that's used around person-centered planning and action and 
    It was created so that a better life could be defined on 
paper and then implemented for people that had the most 
significant behavioral issues--and we're using that terminology 
that we may understand but may not want to use--that have very 
fragile medical needs, that have very severe and profound 
intellectual disabilities. It is primarily for those people 
that person-centered planning came about.
    It is absolutely--we have the opportunity to work on a 
grant through our DD council and through our DD administration 
that helped people leave institutions in Maryland. We had our 
Rosewood closure and then another closure soon after that. We 
used person-centered planning for everyone involved in the 
project. The idea was to break down barriers with community 
providers and primarily families that were opposed to this.
    Through that process, everyone learns. It's an intense 
process, and I think one of the reasons it may be a barrier to 
our service system is the time that it takes to do really good 
person-centered planning and then actually implementing the 
plan so you can have the plan. And we see that perversion all 
of the time, like I have a person-centered plan, but I have no 
provider or anyone that's able to implement it and really get 
the supports and services in place for people that you've 
described and provide that service outside of a facility.
    We have that experience with people with all of those 
labels leaving institutions and nursing homes, living in places 
that they choose, or if they haven't chosen it, we know that 
it's the right thing to do based on how we know the person and 
how they're living in that situation from their end. So really 
the implementing of the plan is where I think we fall very 
    The Chairman. I'm sorry. Yes?
    Ms. Robertson-Dabrowski. Yes, Senator Harkin. I just wanted 
to go back to where you were talking about nothing without us. 
In part of our job as being a transition coordinator, in having 
discharge meetings, a lot of times we run across nursing homes 
that do not want to have the consumers involved. And part of 
our job as a support group--we will not have a meeting without 
the person at the table. We cannot make that type of decisions 
for those types of consumers.
    For consumers with all types of disabilities, we have 
transitioned consumers who cannot speak, consumers who cannot 
see, consumers with visual impairments. We have done that with 
tioning. With the support and technology out there, people are 
living out in the community. They have that choice.
    Again, we go against nursing homes who feel that,

          ``OK. How is this person going to live out in the 
        community if they can't speak? How are they going to 
        contact someone if their attendants are not showing 

    There are communication supports in place for those types 
of things like that. So we work with people with all types of 
    The Chairman. Can I followup on that? You, yourself, were 
    Ms. Robertson-Dabrowski. Yes.
    The Chairman. You had to break free of that, and I'm sure 
there were people who told you that you can't do this and you 
can't do that. How do you overcome--I mean, that's just got to 
kind of grind on you after a while.
    Ms. Robertson-Dabrowski. It does. It does. And what keeps 
me going is knowing that I've done it, and that's why I 
continue to help other people. With the support and family and 
with the services from Liberty Resources, like having an 
attendant, someone to come in to assist me, having the support 
to go out for--what you said about the skills, to learn how to 
be independent.
    At Liberty Resources, we do provide different kinds of 
skills training to get people back into the community, help 
them with budgeting, help them with cooking, help them with 
managing their own attendants. So I was able to move out with 
the services through the State funds. But now we have waivers 
which allow someone to live out in the community. Instead of 
the funding going to the nursing home, the funding is out in 
the community.
    The Chairman. I just want to ask one little question about 
    Ms. Robertson-Dabrowski. That's a big barrier.
    The Chairman. Tell me about housing. I mean, are there 
still subtle kinds of barriers to people with disabilities 
getting housing, like if you show up with someone who's 
disabled, all of a sudden, it's already been rented, or it's 
already been leased, or that kind of thing, you know, again, 
the old kind of racial stereotypes. Oh, yes, the house is for 
rent until an African-American showed up, and all of a sudden 
it got rented--that kind of stuff. We used to have all that--
still do have some of it. But does that happen with people with 
    Ms. Robertson-Dabrowski. I'm sure it's still out there. I 
mean, our biggest barrier is just finding subsidized housing 
that someone can afford to pay the rent, because the majority 
of our consumers are on social security. So they need 
subsidized housing.
    The Chairman. Right. Is there enough of that?
    Ms. Robertson-Dabrowski. No, there's not.
    The Chairman. That's obviously right. They do need 
subsidized housing.
    Ms. Robertson-Dabrowski. So that's one of our biggest 
    The Chairman. And not only subsidized, but subsidized 
accessible housing.
    Ms. Robertson-Dabrowski. Exactly.
    The Chairman. So that's still a problem.
    Ms. Robertson-Dabrowski. Yes.
    The Chairman. Ricardo.
    Mr. Thornton. I just wanted to say that my wife and I--like 
I said in my testimony, I spoke about us living in a home. We 
have a house that we're living in, and it's through DDS and 
through Community Multi-services and us. It's a partnership to 
see whether or not we can maintain it and establish--we do pay 
subsidized toward that. The government takes care of half. But 
the provider oversees it to make sure that everything in it is 
running. It's something that they're trying to see if it works.
    One of the things we had when we first moved there was 
neighbors. We have some wonderful neighbors, and we have some 
that just wonder, ``What are they doing over in that yard?'' We 
have to let them know that we're here and it's not a problem 
and we love you--just try to keep that happiness.
    But I think that affordable housing--it would be nice to 
see more of that, leaving group homes and going into--I would 
like to see more of it. It works, but I can't wait to see the 
end when I get back--was it a 2-year project or a 3-year 
    Ms. Thornton. A 3-year--3 or 4 years.
    Mr. Thornton. But what I'm basically saying--I was asking 
her was it a 2-year--that lease thing that we have a process 
with. But more of them started, and I think it's working. I'd 
like to see more of that type of establishment, because a lot 
of them who are moving into apartments are still going through 
a lot of conflicts with something not working or because 
they're there. We need to improve--or we'll take care of this--
we'll do this side but we won't touch that side until they 
leave or whatever.
    Some of that is still there, and it still needs to be 
cleaned up, because we want to make sure that people have, as 
you said--that they can live in dignity, they're proud of what 
they have, and they have confidence in where they're living. 
Through advocacy, I think it can change and get better. But I 
would love to see more affordable housing for people with 
intellectual disabilities.
    The Chairman. I think that's something, again, that we need 
to pay more attention to, affordable subsidized housing.
    Mr. Thornton. Yes.
    The Chairman. Job training, skills upgrading, high schools, 
and then this.
    Oh, I'm sorry, Ms. Godwin. I didn't mean to cut you off. Go 
    Ms. Godwin. You didn't cut me off, yet. You probably just 
said it, that when we're thinking about housing for people, the 
expectation of employment for people that may not have had that 
opportunity--so people are paying rent, and we do need 
subsidized housing. But we're also helping people have jobs so 
they can afford to live.
    The Chairman. Right, exactly, and pay taxes.
    Ms. Godwin. Yes.
    The Chairman. This has been a great panel. I just have one 
last question, because we're talking about the Olmstead 
decision. I've got three things. First, are people with 
disabilities--are their lives better because of Olmstead?
    Second, what I'd like to ask is, have you taken a look at 
the legislation we put in today, and if you see some blind 
spots that we didn't look at, let us know. I intend to push it 
hard. That's, taking away that Medicaid bias.
    The third thing--is there something I didn't ask or get 
into that you would like to put on the table before we adjourn? 
So let me just ask this. Are people's lives better because of 
    Mr. Smith. I'm a little biased in that I didn't have to 
grow up in a world without the ADA and largely without 
Olmstead, and much of my early life has been shaped by that. I 
have memories of going to the movie theater with my friends, 
you know, the midnight premiere. That's a product of the ADA 
and Olmstead. The incredible satisfaction I get and my family 
and the pride my family has in me being able to live 
independently--that's a product of that decision.
    It would be impossible for me to forget the transformative 
effect it's had on the entire generation of young people. We're 
certainly appropriately named, when you call us the ADA 
generation, because it has shaped every area of our lives, and 
I hope that Olmstead continues to move things toward an 
integrated approach.
    The Chairman. Dr. Justesen, are people's lives better 
because of Olmstead?
    Mr. Justesen. Yes, and here's why. Olmstead was a decision 
that said the ADA is constitutional, and that was absolutely 
    The Chairman. Interesting.
    Mr. Justesen. And it said this with respect to 
institutional living. It said the State and the Federal public 
policy and dollars cannot be solely exclusively used for 
institutional models of living. That's what it said, to the 
extent it was reasonable for the State to make modifications in 
its policies, practices, and procedures. That's essentially 
what it said.
    It didn't say close institutions. It didn't say they are 
better or worse than home- and community-based living. It said 
those dollars need to be moved if the person can and wants to 
live in the community. That established and is the only time--
well, I'm not a lawyer, but that was the first time, in 1999, 
the court basically said, ``We've reviewed this statute, and 
the powers of the Senate and the Congress made this law a civil 
right across this land.''
    In terms of public policy, I think this is where you are, 
Senator. You have that basis from the Supreme Court, and you 
passed the ADA. You have all the tools you need for the 
American people to say, ``We don't want our public dollars to 
be spent disproportionately in favor of institutions.'' At 
least fund them equally, them being home- and community-based 
services, at least equally funded to institutional level 
funding. That's where we are.
    You could argue whether we want to spend more money for 
home- and community-based services. In 20 years, we will be. 
That's maybe legislation down the road. But at least today, are 
we not finally at the place where we should say, ``Money, every 
dollar, fifty-fifty?'' At least that. At least treat it 
equally. That could be--I don't know--maybe the most important 
thing you could do.
    The Chairman. The one thing that I've found that resonates 
with people--conservatives, liberals, whatever--is that 
shouldn't the money follow the person? I mean, why should 
someone here decide--if you're going to have the dollars go 
out--whoever is benefiting from that or whoever is getting that 
benefit, shouldn't they have some say-so on that rather than 
just a bureaucrat?
    Mr. Justesen. I used to be a bureaucrat, so they're not all 
bad people.
    The Chairman. No, they're OK.
    Mr. Justesen. But I will tell you this. What you're 
arguing, I think, is whether people fundamentally believe all 
people are equal and people with disabilities are equal. I 
don't know if I'm that good of a philosopher to go that far. 
The only thing I can say is even if you don't believe that, 
it's still half as expensive.
    The Chairman. That's true.
    Mr. Justesen. It still will save you half your tax dollars. 
Whether it's OMB or CBO, it's still a lot of money that's saved 
somewhere. You can give it back to the people, or you can spend 
it on something else. I don't know.
    The Chairman. Ms. Robertson-Dabrowski, I guess what I'm 
saying is people's lives--you come in contact with them. Are 
they better because of Olmstead?
    Mr. Robertson-Dabrowski. Yes, they are better, but I still 
want to see that the nursing homes--you can go into a nursing 
home in 24 hours. If you want to get out of a nursing home, it 
may take 24 years. I want to see the same going in as in coming 
    A lot of people end up in nursing homes because maybe their 
sugar got high, and they had a home before they went in the 
nursing home. Unfortunately, when they went into the nursing 
home, they didn't have funding to continue to pay their rent 
for their apartment. They lose their apartment at the blink of 
an eye. So if there's some kind of funding to help people who 
do have housing to secure that housing while they're in the 
nursing home for rehab so they don't lose their homes.
    The Chairman. Right. Right. These are the fixes that need 
to be made.
    Ms. Godwin, I'm just going to ask that general question. 
Are people's lives better in different facets of this?
    Ms. Godwin. I think yes, because people are leaving and 
avoiding institutional living. I don't think it has pushed the 
community services provision system enough to do better. And 
all of us would like not to see the nursing homes and 
institutions as a gateway to services. But I think we did cover 
    The Chairman. In other words, that's the way you get 
services--the gateway.
    Ricardo, you and Donna--were you pre-Olmstead? You got 
out--yes, you've been working there for 30 years. So you sort 
of got out of the nursing home and Forest Haven.
    Mr. Thornton. I never lived in the nursing home. I lived in 
a group home.
    The Chairman. Oh, that was Forest Haven.
    Mr. Thornton. Yes.
    The Chairman. You left there, but you've been out of there 
long before Olmstead, though. Yes, sure.
    Mr. Thornton. Probably, yes, because I came out in 1978.
    The Chairman. Yes. So you're way ahead of the curve.
    Mr. Thornton. But I can tell you Olmstead works. A lot of 
friends I have that are working and are happy--they feel--you 
can see the smiles on their face that they have a place to go 
to, and they feel good about themselves, that they are 
contributing. So I think it is working. It's very good.
    The Chairman. Is there anything that any of you have on 
your mind, and you thought, ``I just wanted to get this out, 
and Harkin never asked it?''
    Mr. Thornton. I'll tell you what I have a problem with. I 
have a question for you. Even though we're now--even though 
institutions are closing, we have a lot of youth who are going 
to wind up in correction centers and looking at institutions as 
a solution, and I don't think they should look at that as a 
    I've been quiet on it, but I think they need to look at 
another solution and not look at that as going back. As I said, 
we must continue to move forward. But there's a lot of youth 
that's looking at--wanting them in institution settings, and 
they shouldn't be doing that. That's just something I'm 
concerned about, hoping that we don't go that route.
    The Chairman. You're not talking about necessarily kids 
with what we might recognize as disabilities. You're talking 
    Mr. Thornton. I'm talking about kids that are--no, kids 
without disabilities, right. They'll wind up in receiving home 
inclusions, which I'm hoping we don't look at that as putting 
them in institutions.
    The Chairman. Like juvenile homes or juvenile detention. A 
lot of them are----
    Mr. Thornton. Yes, because at Forest Haven--we had Forest 
Haven, we had Maple Glen, and we had Oak Hill, which is now a 
youth center. We had Cedar Knoll. So you had a lot of youth 
centers around, and I'm hoping that we don't look at that model 
and create more institutions in that type of model.
    The Chairman. Good point. Anything else that----
    Dr. Justesen.
    Mr. Justesen. I just won't be able to sleep if I don't say 
this. Perhaps I read something that I shouldn't have read, but 
I don't care. Yes, discrimination against people with 
disabilities still exists. And if I want to rent an apartment, 
I'm going to have one of my able-bodied friends go rent it for 
me first.
    It still exists. It exists in employment. It exists in 
housing. It exists in State and local government services and 
public accommodations. It still exists, and I think that needs 
to be said clearly. That is why we're still grappling with 
these issues. But it does exist.
    The Chairman. Yes, I'm aware of that. I know it does.
    Mr. Justesen. You just wanted someone to say it, so I'll 
say it.
    The Chairman. I'm glad you did, because it is there. We 
can't sweep it under the rug. It's there. I guess we just keep 
trying to push the boundaries. I guess things are better than 
they were--we have a long way to go. But we're finding some 
enlightened employers now around the country that figured out 
and found out that people with disabilities can be some of 
their most productive workers.
    I always tell the story of my brother, Frank. Bear with me. 
So he's deaf. He grew up deaf, went to a deaf school, all that 
kind of stuff. And they told him he could only be three things 
when he was at deaf school. He could be a baker, a shoe 
cobbler, or a printer's assistant. He didn't want to do any of 
that stuff.
    They said, ``OK, we're going to make you a baker.'' They 
made him a baker, so he became a baker. He never quite liked 
it. He was pretty good at it, but he didn't like it. That's not 
what he wanted to do. He got hired when he was in his 30s by a 
man that had a manufacturing plant in Des Moines who used to 
come into the bake shop and see him, and Frank, my brother, 
would teach him some signs. They kind of struck up a 
    This guy employed about 150 to 200 people in a 
manufacturing plant. They made jet engine nozzles, and it was a 
big machine shop kind of place. So he hired Frank, my brother, 
and taught him--he had someone teach him how to run these 
really intricate drilling machines and all that kind of stuff 
that's done by robots today--but at that time--so he taught him 
how to do that.
    After a few months, the foreman on that line in that shop 
found out that Frank, my brother, was the most productive 
worker on the line--never made a mistake, always there. 
Finally, it dawned on him. This was a very noisy place. The 
noise didn't bother him one bit. He just kept right on working. 
So he went out and hired more deaf people. He figured they were 
his best workers. My brother worked there for 23 years, and he 
only missed about 3 days of work in 23 years.
    More and more people are finding out that--a couple of 
years ago, I was privileged to go up to Connecticut to a 
Walgreen's distribution center. Greg Wasson, who is the CEO of 
Walgreen's, and Randy Lewis--sorry, I lost that name, but Randy 
Lewis. So we went up there, and he had a meeting. He called 
together a bunch of CEOs and others of big companies. Best Buy 
was there and FedEx and Proctor and Gamble and a bunch of 
others, and I was there.
    He has this distribution center. It's one of the largest in 
the country. It's up near Hartford, CT. So over a small 
breakfast before we started the day, he announced that he was 
going to take us through and show us his facility. He said, 
``You know, you're going to be surprised, but about half of my 
people, about 50 percent of the people that work here, are 
disabled.'' Not 10 percent, not 5 percent, but 50 percent.
    He said, ``I want you to know also that I'm not doing this 
out of the goodness of my heart.'' He said, ``This is one of my 
most productive distribution centers per man hour worked with 
less mistakes.'' And he said, ``And when you go through, 
sometimes you'll see people you'll recognize that are disabled 
and other people are not.''
    They're working all together there with minor changes in 
how they did their jobs--visual cues rather than perhaps voice 
cues, different things that they did that also made it easier 
for people without disabilities to do their job, interestingly 
enough--that universal design concept. And he was right. You go 
through there, and you see some people are disabled. Some 
people had physical disabilities. Other people had intellectual 
disabilities, things like that, maybe both.
    It was an amazing thing to see. And he did it because he's 
making the company money, and the people working there are 
making money, and they have good jobs, and they have good 
lives. So it just takes people like Greg Wasson, people like 
that, that are breaking down these barriers, and it's starting. 
I mean, it's growing. It's growing. I think Mr. Wasson has also 
announced that in Walgreen's, they have a goal now that 10 
percent of all their employees will be disabled in their stores 
all around the country, not just for distribution centers. So 
they're working toward that goal.
    I think more and more, people are finding that out, that 
this old discrimination--well, you're disabled and you can't 
quite perform--well, there might be something you can't do. 
There's always something we can't do. I know there's some 
things I can't do. There's jobs that--but there are things that 
you can do.
    There's also that idea of skills upgrading. I've seen so 
many young people with disabilities that just--they get through 
school, high school, and then they just get shunted into a dead 
end job, a subminimum wage job. They're just stuck there. If 
you don't provide skills training and upgrading and people 
bring it along, yes, you just get stuck there.
    Hopefully, the rehab bill that we're getting through will 
start to change that somewhat, too. Everybody can learn. 
Everybody can do things better by just some teaching and 
instruction, skills training, that type of thing.
    The discrimination is still there. But the more and more we 
get people in jobs, let them work, get them out of nursing 
homes, get them into their own homes in their own communities--
we've got to break the old discrimination down, and the way to 
do that is through integration, giving people the ability to do 
these things.
    I didn't mean to go off on that, but you struck a 
responsive chord when you said that there's still 
discrimination out there. I know there is. But we've got to do 
what we can to break it down.
    Is there anything else that anybody wanted to say before we 
adjourn the hearing?
    Yes, Donna.
    Ms. Thornton. I'd like to thank you for having us today and 
thank you for listening to us.
    The Chairman. You're sure welcome. I want to live by what I 
say, and that is, ``nothing about us without us''. I don't want 
to be passing legislation and stuff here without listening and 
finding out from people what we ought to be doing. That's the 
way it ought to be.
    We need more people with disabilities in public office, 
too, more people in public office. I mean in city councils. 
You're on different boards and stuff like that--school boards, 
city councils, State legislatures, things like that. We need 
more people with disabilities in these places.
    Mr. Thornton. You're right.
    The Chairman. Thank you all very much. I know some of you 
came a great distance. I appreciate it very much. Thank you for 
your example. Thank you for your suggestions and your witness 
here today. I've picked up a lot of stuff here. The most 
regulated group in America. I never thought about that.
    Again, thank you. Safe travels back home. Look at that 
legislation. Give us some input. Let us know if we need to do 
anything differently, and, hopefully, we can start to break 
down that institutional bias and get some of that money--you're 
right. I guess you're right. I'm not trying to say to people 
you've got to shut that down or--but at least public moneys 
ought not to be just going to one thing.
    It ought to be at least--you said evenly divided. I don't 
know if that's the right formula or not. But it seems to me 
that the person who's receiving those services ought to be able 
to say, ``No, I'd like to have that in the community. And, by 
the way, it's going to save you taxpayers money.'' What's wrong 
with that?
    Thank you all very much. Safe travels home. We'll keep the 
record open for 10 days for other questions or statements by 
other Senators. If you have some followup, let us know. The 
record will stay open for 10 days.
    Thank you. The meeting will stand adjourned.

    [Whereupon, at 4:29 p.m., the hearing was adjourned.]