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[Senate Hearing 113-862]
[From the U.S. Government Publishing Office]

                                                        S. Hrg. 113-862

                  FULFILLING THE PROMISE: OVERCOMING 
   PERSISTENT BARRIERS TO ECONOMIC SELF-SUFFICIENCY FOR PEOPLE WITH 
                              DISABILITIES

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

                                HEARING

                                 OF THE

                    COMMITTEE ON HEALTH, EDUCATION,
                          LABOR, AND PENSIONS

                          UNITED STATES SENATE

                    ONE HUNDRED THIRTEENTH CONGRESS

                             SECOND SESSION

                                   ON

 EXAMINING OVERCOMING PERSISTENT BARRIERS TO ECONOMIC SELF-SUFFICIENCY 
                      FOR PEOPLE WITH DISABILITIES

                               __________

                           SEPTEMBER 18, 2014

                               __________

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                                Pensions
                                
                                
                                
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          COMMITTEE ON HEALTH, EDUCATION, LABOR, AND PENSIONS

                       TOM HARKIN, Iowa, Chairman

BARBARA A. MIKULSKI, Maryland		LAMAR ALEXANDER, Tennessee
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
MICHAEL F. BENNET, Colorado		PAT ROBERTS, Kansas
SHELDON WHITEHOUSE, Rhode Island	LISA MURKOWSKI, Alaska
TAMMY BALDWIN, Wisconsin		MARK KIRK, Illinois
CHRISTOPHER S. MURPHY, Connecticut	TIM SCOTT, South Carolina	
ELIZABETH WARREN, Massachusetts

                      Derek Miller, Staff Director

        Lauren McFerran, Deputy Staff Director and Chief Counsel

               David P. Cleary, Republican Staff Director

                                  (ii)

  
                             C O N T E N T S

                               __________

                               STATEMENTS

                      THURSDAY, SEPTEMBER 18, 2014

                                                                   Page

                           Committee Members

Harkin, Hon. Tom, Chairman, Committee on Health, Education, 
  Labor, and Pensions, opening statement.........................     1
Casey, Hon. Robert P., Jr., a U.S. Senator from the State of 
  Pennsylvania...................................................     1
Alexander, Hon. Lamar, a U.S. Senator from the State of 
  Tennessee, opening statement...................................     3

                               Witnesses

Kwong, Ann Wai-Yee, Student, University of California Berkeley, 
  El Monte, CA...................................................     6
    Prepared statement...........................................     8
Massey, Hon. Becky Duncan, State Senator and Executive Director, 
  Sertoma Center, Knoxville, TN..................................    10
    Prepared statement...........................................    13
Lozano, Alison, M., Ph.D., Executive Director, New Jersey Council 
  on Developmental Disabilities, Trenton, NJ.....................    16
    Prepared statement...........................................    18
Lauer, Geoffrey, M., Executive Director, Brain Injury Alliance of 
  Iowa, Iowa City, IA............................................    20
    Prepared statement...........................................    22
Herbst, Justin, Human Resources Supervisor, United Parcel 
  Service, Western Springs, IL...................................    26
    Prepared statement...........................................    28

                                 (iii)

  

 
  FULFILLING THE PROMISE: OVERCOMING PERSISTENT BARRIERS TO ECONOMIC 
             SELF-SUFFICIENCY FOR PEOPLE WITH DISABILITIES

                              ----------                              

                      THURSDAY, SEPTEMBER 18, 2014

                                       U.S. Senate,
       Committee on Health, Education, Labor, and Pensions,
                                                    Washington, DC.
    The committee met, pursuant to notice, at 9:34 a.m., in 
room SD-430, Dirksen Senate Office Building, Hon. Tom Harkin, 
chairman of the committee, presiding.
    Present: Senators Harkin, Alexander, and Casey.

                  Opening Statement of Senator Harkin

    The Chairman. Good morning, everyone. The Senate Committee 
on Health, Education, Labor, and Pensions will please come to 
order. This morning, our hearing is titled Fulfilling The 
Promise: Overcoming Persistent Barriers to Economic Self-
Sufficiency for People with Disabilities. Both Senator 
Alexander and I will have opening statements. But there's a 
joint session of Congress, and Senator Casey, being on the 
pertinent committee for that, has to go to the House. So I will 
yield time to Senator Casey from Pennsylvania for a statement.

                       Statement of Senator Casey

    Senator Casey. Mr. Chairman, thank you very much. I want to 
thank you and the ranking member for having this hearing today, 
and I appreciate the 1-minute that I promised I would adhere 
to.
    I want to thank the witnesses for being here and for your 
advocacy and your work and what you bring to these issues.
    I especially want to commend the chairman for not just 
today's hearing and for his more recent work on a whole range 
of issues that are important to and relate to individuals with 
disabilities, but especially his long, long service in the 
Senate on a range of issues, in particular, issues that relate 
to those individuals and their families with disabilities. So I 
won't be here for the testimony, but, like most of us here, I 
have very, very capable staff. Gillian Mueller will be here.
    I'm just grateful for the work that we've been able to do 
together and most recently on the ABLE Act, which is a change 
in the tax code to create a tax advantage savings account for 
individuals with disabilities. We're trying to get that 
completed in the near term.
    Mr. Chairman, I'm grateful for your leadership, and I know 
you've got several more months of work and leadership. But I'm 
grateful to have learned from you and to be inspired by your 
work.
    Thank you very much.
    The Chairman. Thank you very much, Senator Casey.
    I would just say at the outset that we had this hearing 
scheduled for some time. People who had purchased tickets had 
set their plans in order, and then the president of the Ukraine 
decided to come here and speak to a joint session of Congress. 
So both Senator Alexander and I decided we would go ahead with 
the hearing and not reschedule it. That's why you'll see a lot 
of people not here this morning because they have other 
committee assignments, like Senator Casey has, to be involved 
with the Ukraine, which, obviously, is a very important issue.
    Thank you very much, Senator Casey.
    Good morning, everyone. Today's hearing will focus on the 
urgent national challenge of people with disabilities living in 
poverty and what we can do about it. Two days ago, the Census 
Bureau issued its 2013 report on poverty in the United States. 
The report had some good news: poverty for the overall 
population went down a little bit from 15 percent to 14.5 
percent. There was even better news with regard to children, 
where the poverty rate fell almost 2 percentage points. Other 
groups including Asian-Americans, Hispanics, women, and people 
in all parts of the country saw declines.
    But those with a disability were one of just two groups to 
see an increase. Shockingly, people with a disability now have 
a 28.8 percent poverty rate, which is higher than any gender, 
ethnic, or racial group tracked by the Census Bureau, and twice 
the rate of people without disabilities. Twenty-four years 
after the passage of the Americans with Disabilities Act, we 
confront this.
    We have been successful at meeting many of the goals of the 
ADA. We have increased the accessibility of our buildings, our 
streets, our parks, beaches, and recreation areas. We've made 
our books and TVs, telephones, and computers more accessible. 
For many Americans with disabilities, our workplaces have 
become more accessible as well, as we'll hear from one of our 
witnesses.
    But far too few people with disabilities are in the 
workforce. Of the almost 29 million people with disabilities 
over 16 years of age, less than 20 percent participate in the 
workforce compared with nearly 70 percent of those without a 
disability.
    If almost 30 percent of people with disabilities are living 
in poverty, a rate that is going up, not down, and the 
unemployment rate for people with disabilities continues to be 
double that of people without disabilities, and only 20 percent 
participate in the workforce, then we have a very serious 
problem. We are far from meeting the ADA's goal of economic 
self-sufficiency, one of the four goals of the ADA.
    To state the obvious, not being part of the workforce 
contributes powerfully to the incidence of poverty. 
Unfortunately, these negative trends are long-term and 
entrenched. We have not seen improvements over time and, as I 
said earlier, compared to last year, the poverty rate for 
people with disabilities has actually increased. That shouldn't 
be. It should be going in the other direction.
    Because of these stubborn trends, I asked my HELP Committee 
oversight staff to take a closer look at the problem. I asked 
them to investigate why people with disabilities live in 
poverty at a greater rate than those without disabilities and 
how they fare at moving out of poverty and into the middle 
class, into the workforce. So our team heard from over 400 
people with disabilities from across the country, all of whom 
had or currently live at or below the poverty level. These 
participants were generous in sharing their stories and 
circumstances. Here is a little of what we learned.
    Living with a disability in America can be both 
economically and socially costly. Many people with disabilities 
fear that earning or saving too much money could cause them to 
lose access to supports that they need to live independently in 
the community. People with disabilities often cannot save for 
emergencies and unanticipated challenges.
    People with disabilities often cannot participate in the 
workforce because they lack reliable, accessible transportation 
and accessible, affordable housing. People with disabilities 
continue to report experiencing employment discrimination, 
discriminatory wages, inaccessible workplaces, and persistently 
low expectations about what they can accomplish.
    I think after 24 years and facing the data that we have 
from the Census Bureau, with the information that we have 
obtained--and, by the way, we have published a report--our 
staff did. It's out today--on what they found in their 
investigations. I really do believe that Congress needs to 
address these concerns. We need to have strategies to work with 
businesses around the country to break through these barriers 
and to create paths to the middle class for the nearly 29 
percent of people with disabilities living in poverty.
    Today we'll hear from people with disabilities who 
participated in this investigation and also from national 
experts about how to address this persistent problem. We'll 
learn from their stories and hear their best ideas about how we 
can increase opportunities for people with disabilities to move 
out of poverty into the workforce and into the middle class. As 
I say that, it's so important to remember and to take to heart 
one motto of a disability group that I learned a long time ago: 
Nothing about us without us. So as we move ahead, we need to 
engage the broad spectrum of the disability community in 
informing us as to what they do need to be able to be 
successful in the workplace in America.
    I now invite my colleague and Ranking Member, Senator 
Alexander, for his opening statement.

                 Opening Statement of Senator Alexander

    Senator Alexander. Thanks, Mr. Chairman.
    For all of us as we go through life, the question 
eventually becomes what goes after the comma after our name. 
For Senator Harkin, who is retiring from the Senate at the end 
of this year after 40 years, I think what's likely to go after 
the comma after his name is Champion for Americans with 
Disabilities.
    As a tribute to his late brother, Senator Harkin has fought 
tirelessly to help individuals with disabilities during the 
time he has been here, and he has left quite a legacy. He 
sponsored the Americans with Disabilities Act, Individuals with 
Disabilities Education Act, the Assisted Technology Act, and, 
most recently, when we reauthorized the Workforce Innovation 
and Opportunity Act, he was in the middle of what we did about 
vocational rehabilitation. So thanks to his work, that is 
what's likely to be after the comma after his name.
    We've also worked pretty well on other issues. We've gotten 
a lot done in this committee over this year. Sixteen bipartisan 
bills have become law, and another one is on its way to the 
President's desk, which shows that Congress can function when 
it wants to.
    Identifying and addressing barriers to employment for 
individuals with disabilities is certainly a top priority in my 
State of Tennessee. According to the Social Security 
Administration, as a result of having a disability, we have 
about 170,000 Tennesseans who receive supplemental security 
income. Governor Haslam last year signed an executive order 
convening an Employment First Task Force to identify State 
agency policies and procedures that create barriers and 
disincentives for employment of people with disabilities.
    In May, Tennessee revealed a new plan to deal with that. It 
will allow the State to serve a greater number of people in a 
more cost effective way and help serve more individuals in the 
community. They will move from paying for around-the-clock 
residential care to paying more for limited and less costly 
services.
    Despite the great work being done in Tennessee, we have a 
long way to go. As Senator Harkin said, last year, only 17.6 
percent of persons with disabilities had jobs, compared to 64 
percent of people without a disability. One major obstacle is 
that the Federal Government penalizes individuals with 
disabilities who want to save in order to support themselves as 
opposed to relying on the government.
    To collect Social Security income benefits and Medicaid 
benefits in most States, individuals can't hold more than 
$2,000 in total assets. This discourages individuals from 
finding employment in some cases. That's why I was happy to be 
a co-sponsor of the ABLE Act, which Senator Casey mentioned and 
which Senator Burr and Senator Casey are the principal 
sponsors. It would allow the creation of an account that would 
let families of people with disabilities save for expenses in a 
similar manner as families concurrently do for college 
expenses. The ABLE Act is a great example of the Federal 
Government providing support that allows for individuals with 
disabilities.
    Now, I'm going to have a chance to introduce Senator Massey 
in just a minute, so I won't do that now. I'll just say that 
the need for help and for opportunities for citizens with 
disabilities is great in the area of Tennessee from which she 
and I both come from. In Knox County, there are nearly 10,000 
individuals with disabilities currently on SSI. In Blount 
County, it's 2,600; Sevier County, nearly 1,900; Anderson 
County, 2,200.
    We're talking about real people, people we know, people 
with whom we live, who could be helped if we would remove some 
of the barriers that are in the way of individuals with 
disabilities finding a job. Thank Senator Harkin for the 
hearing, and I look forward to the testimony.
    The Chairman. Thank you very much, Senator Alexander, and 
thank you for your very kind and generous words. Let me respond 
in kind by saying that it's been a great privilege to chair 
this committee and especially to have such a great working 
relationship with you. We have had 16 bills go through with one 
more on the way, the sunscreen bill that we got passed 
yesterday. So, you know, people can work together. These are 
meaningful bills, like the Workforce Innovation and Opportunity 
Act that we worked together on for 5 years. Sometimes, good 
food takes a long time to prepare, and the same thing with 
legislation. We have had a great working relationship.
    This may be the last time I chair a hearing in the Senate. 
It's interesting. I just thought of this. The first hearing 
that I was able to chair when I took over the Disability Policy 
Subcommittee of this committee--I remember I sat down in that 
last chair--was on disability policy--my first one in 1986. So 
this now will be my last perhaps after all these years. But 
this is an important one. It's important that we move ahead on 
this issue of employment of people with disabilities.
    We have a great panel, a wonderful panel. I'll introduce 
them all, and then we will come back and hear all your 
statements.
    Our first witness is Ann Kwong. Ms. Kwong is a student at 
the University of California Berkeley majoring in psychology. 
She received a Gates Millennium Scholarship, which helps pay 
for her school expenses. During her studies at Berkeley, she 
served as co-president of the Disabled Student Union and as a 
Cal Student Orientation Leader. She recently completed an 
internship with the Department of Defense Educational Activity 
in Washington, DC.
    Our second witness is from Tennessee, and I'll yield to 
Senator Alexander.
    Senator Alexander. Mr. Chairman, our next witness has 
several advantages. One of the foremost is that she has a 
father from Tennessee and a mother from Iowa.
    [Laughter.]
    So she's in good shape with us. She is State Senator Becky 
Duncan Massey of Knoxville. She was elected to the Senate in 
November 2011, and she serves with distinction. She's the only 
businesswoman in the assembly. She is also a provider of social 
services. She has been working with the Sertoma Center in 
Knoxville since 1993 and has run it for the last 15 years.
    The senator serves over 100 adults with intellectual 
disabilities by providing vocational training. She'll tell us 
more about that. She has a unique perspective, over 21 years of 
experience working with individuals and disabilities, as well 
as her service to the people of Knoxville in the Tennessee 
General Assembly.
    She is the sister of Congressman John J. ``Jimmy'' Duncan, 
who is my Congressman, and the daughter of the late Congressman 
John Duncan, Sr. I look forward to her testimony and I'm proud 
that she is here today.
    The Chairman. Thank you very much.
    Thank you for being here, Senator Massey.
    Our next witness is Dr. Alison Lozano. Dr. Lozano is the 
executive director of the New Jersey Council on Developmental 
Disabilities. She has served as a genetic social worker at the 
University of Tennessee's Pediatrics Department--it's 
Tennessee's day here, I think--and as Chief of Social Work and 
Technical Assistance Director for the Boiling Center for 
Developmental Disabilities in Memphis.
    She has also served as executive director of the Utah 
Developmental Disabilities Council. She received her Ph.D. in 
social work and a Master's in Public Administration from the 
University of Utah and a Master's in Social Work from the 
University of Texas.
    Our next witness is Geoffrey Lauer. He is the executive 
director of the Brain Injury Alliance of Iowa and chair of the 
Olmstead Consumer Task Force. He has served as a regional and 
national director of State affairs for the Brain Injury 
Association of America. He has served as the executive director 
of the Arc of Johnson County and a member of the board of 
directors of the Community Mental Health Center for Mideastern 
Iowa.
    Our final witness is from the State of Illinois. Senator 
Kirk would want to be here, but he also has to be at that joint 
session because of his obligations on other committees.
    Our final witness is Justin Herbst. Mr. Herbst works in the 
Human Resources Department at the UPS facility in Hodgkins, IL. 
He has worked at a women's shelter and interned at Northern 
Trust Bank. He has also volunteered at Hinsdale Hospital. He 
received his bachelor's degree in history with a minor in 
philosophy from Southern Illinois University.
    I just might add parenthetically that Mr. David Abney, the 
CEO of UPS, was here earlier. He was here to greet Justin, and 
I think that's a real mark of leadership, that the CEO of this 
huge corporation, UPS, would actually be here to sort of add 
his stamp of approval to the fact that we need to employ more 
people with disabilities. I thought that was very kind of him 
to be here.
    Before we start with Ms. Kwong, I want to introduce--
someone told me that Bob Williams is here, too, but I haven't 
seen him. Oh, Bob is here. He's the senior adviser to the 
Deputy Commissioner of Social Security, a long-time compatriot 
of ours. He worked here off and on back in the 1980s and 
through different administrations and is now at the Social 
Security Administration. We welcome him here today, also.
    All of your statements will be made a part of the record in 
their entirety. I read them thoroughly last evening. So what I 
would ask all of you is to just summarize in 5 minutes what you 
want us to know, and then we can get into a discussion.
    Ms. Kwong, we'll start with you.

   STATEMENT OF ANN KWONG, STUDENT, UNIVERSITY OF CALIFORNIA 
                     BERKELEY, EL MONTE, CA

    Ms. Kwong. Thank you. ``You will not graduate. Look at the 
statistics.'' I've heard those words repeatedly throughout my 
life, even from my California Department of Rehabilitation, 
DOR, counselors.
    My name is Ann, and I'm a fourth-year student at UC 
Berkeley. My family and I immigrated from Hong Kong in the year 
2000 in search of better opportunities for my brother and I. 
Although the United States provided this, I am still fully 
aware that disability related aspects of my life have 
predisposed me to the risks associated with low self-
sufficiency.
    In addition to the enhanced risk, systematic barriers 
include DOR's low expectations and institutional barriers in 
Supplemental Security Income, SSI. These systems were intended 
as transitional tools to acclimate students from school to 
work. However, several aspects of the policies are out of date 
with the needs of contemporary society, diminishing the 
effectiveness of these programs.
    As my opening quotation implies, societal stigma and 
preconceived notions impede the possibilities of acquiring 
educational advancement or work experience to better equip 
myself for employment. For a period of time, my DOR counselors' 
disparaging remarks invoked self-doubt. Even if I succeeded in 
graduating from Berkeley, am I truly capable of obtaining full-
time employment? The negativity I felt further decreased my 
self-esteem as an individual.
    My later experiences at Berkeley, my summer internship 
opportunity, and personal observations not only altered my 
later self-perception, but further solidified my belief. If 
policies designed to aid transition for individuals with 
disabilities are not amended to reflect current demands, the 
correlation between disability and poverty will only increase.
    I found it imperative that instead of discouraging me from 
pursuing higher education with bleak statistics, my DOR 
counselors should have empowered me with knowledge and 
confidence to realize my full potential. The fear that I would 
not progress toward my employment goal does not justify my 
counselor's right to diminish my self-worth. She justified her 
imposed restrictions on my university enrollment as acts of 
protection. She did not wish for me to fail and squander my 
time.
    I now perceive this as a paternalistic and demeaning view 
of young adults with disabilities. If students' accountability 
and progress are of concern, DOR should implement a mandated, 
goal-directed information and support program to disseminate 
employment knowledge and help students strategize completion of 
individual plans of employment. My self-growth emerges as a 
more confident and knowledgeable individual, and continued 
professional development can all be traced to a similar type of 
guidance course that I enrolled in at Berkeley.
    The SSI system should also be altered to match the needs of 
contemporary society. Since average college completion is 
approximately 5 years, and many students with disabilities take 
reduced course loads further extending their time, the 
traditional 22-year age cap of the student exclusionary rule, 
which deems them ineligible for SSI, is no longer applicable in 
modern days.
    This past summer, I was afforded the opportunity to work at 
the Department of Defense Education Activity. However, due to 
my recent birthday in June, I turned 22 and no longer qualified 
for SSI. Although my internship was paid, the income barely 
covered my $4,000 cost of housing. In addition, SSI only allows 
individuals to have $2,000 savings in their account. This limit 
made it especially difficult when paying for my mandated $4,000 
housing installment. How could I pay $4,000 in one installment 
when I'm limited to $2,000 in my account?
    Thus, I strongly recommend conducting research to determine 
modifications to the age restriction and regulations that allow 
individuals to exceed the $2,000 limit for certain situations. 
Various instances such as down payments for an apartment and 
acquiring an internship requires such alterations. If 
individuals can provide evidence of the use and purpose of 
their savings as an effort to increase their chances of 
obtaining successful employment, which could include paying for 
shelter, advancing education to increase opportunities, or 
money directed for internships and professional development, 
exceptions should be permitted.
    Considerations of the above recommendations to amend 
existing transitional programs can maximize the intent and 
effectiveness, allowing persons with disabilities to reach 
their potential and disrupt the perpetuation of disability and 
low self-sufficiency.
    Thank you.
    [The prepared statement of Ms. Kwong follows:]

                Prepared Statement of Ann Wai-Yee Kwong

    Every individual has a unique set of challenges as they attempt to 
reach success; persons with disabilities face many common systemic as 
well as societal barriers in an attempt to reach their own success. For 
persons with disabilities, aspects relating to their disabilities may 
have already predisposed them to a higher chance of terminating in 
poverty and limited self sufficiency. Such barriers include 
institutional barriers in the Supplemental Security Income (SSI) and 
California Department of Rehabilitation (DOR) systems; these systems 
were intended as transitional tools to help students acclimate from 
school to work. However some of the policies are out of sink with the 
needs of contemporary society, diminishing the effectiveness of these 
programs. In addition, societal stigma and preconceived notions 
increases the difficulty for students with disabilities to acquire 
necessary work experience to be equipped for employment.
    This type of stigma also exists within DOR counselors; based on 
first-person observations, DOR counselors set low expectations and 
discourage students from pursuing their individualized success. In 
addition to better training for DOR staff, SSI case workers should also 
be well versed in their own regulations; even though the student 
exclusionary rule was designed with the intension of allowing college 
students to acquire work experience, the 22-year-old age cap is out of 
sink with contemporary society, and many SSI case workers as well as 
persons with disabilities are unaware of this regulation. The student 
exclusionary rule's effectiveness is not maximized if such a valuable 
transition tool designed to help students, is not being utilized 
because students are unaware of it. As a result, these barriers that 
impede people with disabilities chances of achieving success should be 
deconstructed so they are given equal opportunity to find their 
individualized success; after all, people with disabilities also have a 
right to earn and become productive members of society.
    My personal journey of attaining success is also filled with the 
systemic barriers and societal stigma stated above. In addition, my 
entire family's status as immigrants further increased my risk of 
limited self-sufficiency rather than attaining success. The first few 
years when we first moved to the United States were difficult. It was 
challenging for my parents to find work due to their lack of 
proficiency in English and level of educational attainment; they were 
only able to procure low-wage labor intensive jobs. Unlike my other 
peers, my parents were unable to assist me with homework nor afford the 
expensive college test preparation courses. Thus, in addition to school 
work, I had to advocate for myself. If academic educations were not 
provided, I had to meet with the school administrators and present my 
case; advocacy, on top of using braille which requires 200 percent time 
to complete school assignments, is extremely time consuming. This 
continued throughout my academic career at UC Berkeley, which I 
currently attends as a 4th year student. In Berkeley, basic 
accommodations were just the beginning. On several occasions, I had to 
petition and appeal decisions just to enroll in a course. To illustrate 
the emotionally taxing and time consuming nature of advocacy, I spent 
three semesters advocating with Berkeley staff, the Disabled Students 
Program, as well as the Berkeley ADA compliance officer just to take 
the same Mandarin course with the same amount of units as my able 
bodied peers. My family's economic constraints, coupled with time 
limitations, means that DOR and SSI became is still are integral parts 
toward achieving my educational aspirations.
    Due to my family's status, I have always viewed DOR as an integral 
system in my process of achieving success and to mitigate some of the 
effects of my disability. However, their emphasis on attaining 
employment, meant counselors only focused on encouraging and persuading 
students to acquire a job as soon as possible without consideration of 
their aspirations nor potential. During my senior year in high school, 
I was repeatedly discouraged to attend a 4-year university despite the 
fact that I had performed well in high school and had been accepted by 
over five universities. My DOR counselor in Los Angeles would quote 
grim statistics of college completion by individuals with disabilities. 
Her plan for my future was to graduate high school, attend an 
independent living skills center, then a trait school or a community 
college; attending a university was seen as a ``last resort.'' The 
ideal success she envisioned was for me to work at a call center or a 
factory that build boxes. She clearly stated if I did not adhere to 
this plan, DOR would not provide any financial nor equipment support.
    In contemporary society merely attaining any type of job is not 
sufficient. The pay one earns from working at a call center or factory 
is insufficient if one decides to have a family and desires to be a 
contributing member of society. In addition the job market is 
increasingly more competitive to the point where a high school diploma 
is simply not enough; higher education and work experiences have become 
necessities in the process of attaining employment for American youth, 
but especially for young adults with disabilities. Employers already 
have low expectations and negative notions about individuals with 
disabilities and their ability to be effective and productive workers. 
Through personal experience, I came to the realization that a higher 
education degree coupled with a strong resume and prior work experience 
is indispensable in effacing some of these negative notions; work 
experience not just ``tell'' but rather ``show'' the employers of my 
ability to be a productive member. If DOR counselors continue to impose 
their own visions on young people with disabilities, this jeopardizes 
their ability to become the most effective and productive members of 
American society and increases the likelihood of poverty and limited 
self-sufficiency.
    In addition to the DOR system, I view SSI as another imperative 
transitional tool in altering my destiny of poverty. However, some of 
the regulations around SSI is out of date. In the summer of 2014, I was 
afforded the opportunity to intern at the Department of Defense 
Education Activity; however due to the fact I recently turned 22 in 
June, I no longer qualified under the SSI student exclusionary rule. 
Although my internship was paid, the income was only enough to cover my 
rent, which was $4,000 for 10 weeks; many internships opportunities 
however are non-paid. In addition, SSI only allows individuals to have 
$2,000 of savings in their bank account at one time, however I had to 
pay my rent all at once before I moved in. How could I pay $4,000 in 
one installment when I have less than $2,000 in my bank account? I was 
privileged enough to have parents who were willing to lend me a portion 
of their money to pay the $4,000 installment until I could repay them 
with my salary. Internship opportunities and summer work experiences 
are vital to professional development and possibility of future 
employment, especially for individuals with disabilities; society has 
preconceived stigma about my inability to be as productive as an able 
bodied individual. Thus, I strongly believe that the best way to dispel 
these preconceived notions is to have work experience to ``show not 
tell'' potential employers of my ability to be a productive and 
contributing member of their workforce.
    If students with disabilities, such as myself, cannot save money to 
cover the cost of internships, nor be allowed to have enough money to 
pay for housing or down-payment for renting, this places us at a 
significant disadvantage. In addition, students with disabilities, such 
as myself, spend most of our time during the semester advocating for 
academic accommodations. I did not have time to acquire work 
experiences, like some of my peers, thus I rely on the summer months as 
time to gain valuable work experience. In addition, the current 22-
year-old age cap of the student exclusionary rule should be changed. In 
contemporary society, many student take an average of 5 years to 
complete university education; since many students with disabilities 
have to balance the negative affects of their conditions, many tend to 
take a reduced course load, further extending the time we are in school 
from the average of 5 to 6 or even 7 years. As a result, instead of 
graduating at 22, it is not uncommon to see students with disabilities 
that are 25 years old. Since I was over 22 and did not qualify under 
the student exclusionary rule, my internship salary allowed me to 
afford housing, but not food and transportation costs; and my SSI 
checks were interrupted because my income deducted the entirety of my 
SSI checks. Once calculations are done, I was in a deficit after the 
internship since my entire salary paid for housing and had no money 
left for transportation and food costs.
    My prior experiences at Berkeley and my summer internship coupled 
with my personal observations further solidified my belief that if 
policies meant to aid individuals with disabilities transition are not 
amended to reflect the needs of contemporary society, the correlation 
between disability and poverty will further grow. Instead of 
discouraging students from pursuing higher education, DOR counselors 
should be supportive. In lieu of breaking down my self-esteem with 
statistics, I should be empowered with the knowledge and opportunities 
to realize my full potential. The fear that I will not make progress 
toward my employment goal should not justify DOR counselor's rights to 
diminish my self-esteem with grim statistics. I clearly remember that 
my DOR counselor stated her restrictions of my attendance to a 
university is an act of protection; she did not wish for me to fail and 
squander my time. This is clearly a paternalistic and demeaning view of 
students with disabilities. If the progress of students is of concern, 
DOR should implement a mandated goal directed information and support 
program to disseminate employment knowledge and help students 
strategize their path of employment to keep students accountable and on 
track for their individual plan of employment (IPE) completion. DOR 
mandates preliminary assessments for equipment recommendations, thus I 
believe it is logical to have a structured mandated employment 
educational program for its clients.
    Persons with disabilities should not be told ``you will conform to 
negative statistics and drop out of college'' before they are given the 
opportunity and resources toward their aspirations. DOR counselors 
should help students with the progression and achievement of their IPE 
using these employment knowledge programs which provides a supportive 
environment conducive to the forming of well informed confident workers 
rather than the college drop-outs with disabilities that were once 
envisioned. I also recommend the SSI system be altered to match the 
needs of contemporary society. Since the average college completion is 
around 5 years, and students with disabilities may take a reduced 
course load which further extends this, the 22-year-old age cap on the 
resources of the student exclusionary rule is not maximized to aid 
students. The age restriction should be raised, and further surveys as 
well as research should be conducted in order to determine the new age 
restriction. In addition, SSI should have regulations that allow for 
individuals to save and maintain over $2,000 in their bank account for 
certain situations. Many situations in life, such as leaving down-
payment for an apartment and acquiring an internship, require savings 
which exceed the $2,000 restriction. Thus, if individuals are able to 
provide evidence for the purposes that their savings are to be used, 
which increase their chances of attaining successful employment such as 
acquiring shelter to live, further their education to increase 
employment opportunities, or money to be used during internships to 
buildup their resumes, exceeding the $2,000 cap is justified. The above 
recommendations should be strongly considered; making such amendments 
to existing transitional programs can maximize its intent and 
effectiveness, yielding more persons with disabilities to reach their 
aspirations and interrupting the perpetuation of disability and limited 
self-sufficiency.

    The Chairman. Thank you very much. You're very impressive. 
I'm going to suggest you think about taking up motivational 
speaking, too, because you're a great speaker.
    Ms. Kwong. Thank you.
    The Chairman. Senator Massey.

   STATEMENT OF HON. BECKY DUNCAN MASSEY, STATE SENATOR AND 
       EXECUTIVE DIRECTOR, SERTOMA CENTER, KNOXVILLE, TN

    Senator Massey. Thank you, and thank you for inviting me 
here today to testify on this very important issue to millions 
of individuals with disabilities across our country.
    As an intellectual disability provider in Knoxville for 
over 21 years, I know firsthand how policies and programs 
affect these individuals and their families. As a State 
senator, I understand the process and the challenges that go 
into making good public policy and the difficulties in the 
implementation. I hope to bring these unique perspectives to 
the conversation today.
    There are folks that we serve, like Jonathan, who came to 
our agency from a foster family and an abusive situation. There 
were 10 people living in a three bedroom home, and it was not 
good. When he came to our agency and we showed him his room, it 
was similar to a scene from The Blind Side: ``Is this my very 
own room, and is this my very own bed?''
    He is truly happy now, safe, and well taken care of. Now 
that he has graduated from high school, his goal is to work 
with police or firefighters. They are his heroes, because they 
helped save him. But there are many, many, more people like 
Jonathan in States across the country.
    In Tennessee, there are a lot of positive things happening 
to help more individuals with disabilities to receive their 
life's dream of having a paid job that they are good at and 
that they enjoy, a job that utilizes their skills that they 
possess. We need to realize that individuals with disabilities 
are not different from you or me.
    But it's hard to put them in a little box and say, ``OK. 
This one solution is going to be the solution for everybody,'' 
because they have different strengths and weaknesses, just like 
you and I have different strengths and weaknesses. They just 
need, oftentimes, a little more help in identifying their 
abilities and more support in translating those abilities into 
a successful job.
    Senator Alexander talked about Governor Haslam's Executive 
order establishing the Employment First Initiative, and they 
actually issued their first report this week, which I drew some 
of my written testimony from. Their timing was good for me. But 
coupled with this, we have received several statewide grants 
that are focused on changing the culture and helping increase 
employment for folks with disabilities.
    We are working to have people look at Employment First, and 
we've informed the Tennessee Works Partnership, focusing on the 
three Federal grants now operating in Tennessee. We are one of 
only two States to have received all three of the national 
employment grants available in the last 3 years. So we're 
working hard.
    Also through the efforts of our general assembly, we have 
increased the opportunities for scholarships available for 
post-secondary education for folks with intellectual and 
developmental disabilities. These programs help young people 
make a successful transition from high school to adult life by 
providing career counseling and developing academic, 
vocational, and decisionmaking skills. While there are not 
enough spots there yet--I went and visited the classroom with 
them a few weeks ago--it's still a big step in the right 
direction, and we have them in all three grand divisions of 
Tennessee.
    There are a number of barriers, some of which you have 
mentioned already, that are deterrents to employment. One of 
the big things, I think, is a lack of coordination and 
flexibility among both the State agencies and the Federal 
agencies that administer the funding and programs that are so 
important and vital to our folks with disabilities.
    One solution would be--and we're working on that in 
Tennessee--is to develop a memorandum of understanding between 
the agencies that would help facilitate the coordination of the 
programs. Another would be to look at ways to decrease some of 
the regulations which are either duplicative or unnecessary. 
Oftentimes, you've got to put in an application here, and then 
you've got to put in basically the same application here, and 
oftentimes people just don't know to navigate all those 
different systems and how to access them, which causes a lot of 
problems.
    We talked a little bit about the inadequacy of 
transportation and if we could help incentivize cities to 
develop and improve reliable transportation for individuals 
with disabilities to get to their jobs. More benefits 
counselors might help with helping people navigate the system 
and also lessen the fears--whether they're myths or 
actualities, and I've heard of both--that the individuals will 
lose their benefits when they work.
    What happens, though, is that they get a job which may only 
be paying $7.50 or $8 an hour or minimum wage. So then they 
lose their benefits, and then they have trouble making their 
payments for their apartment or their home that they're living 
in and all the expenses. If they're only getting their 
disability income, they actually only have $30 a month to spare 
for extras if they're not working. Just think of how quickly 
you can spend $30. So that causes problems.
    As Ann mentioned, the asset limit--there really is no way 
to save for emergencies or unexpected expenses or even expected 
expenses, as she said, to help pull them out of poverty. If you 
think about it, this $2,000 limit has been in effect for over 
40 years and has not been adjusted for inflation. That $2,000 
today would be equal to about $13,000 on a calculator I looked 
at.
    The ABLE Act will be wonderful and should really, really 
help with that. But I also think we should look at that asset 
limit and either increase it or put in a cost of living 
inflator that would be automatic every year and at least do 
something about it going forward.
    The waiting lists are terrible across the country. We have 
over 7,000 people on the waiting list in Tennessee. It tends to 
affect our younger folks graduating from high school that have 
gone through post-secondary situations because they can't get 
services, and they kind of fall through the cracks. The skills 
they were learning--they go backward oftentimes.
    At my agency, we're serving more older folks, and we have 
to kind of look at different ways to provide those services as 
they're aging and getting more frail. We need to look at ways 
to seamlessly do the transitions there.
    Some businesses hire individuals with disabilities as a 
form of charity. Charity is not what these individuals need. 
They need real jobs that utilize their skills. Only a job can 
give them a place in this world, not relegated to the shadows 
and relying upon the charity of strangers in the government. 
Work would fill their days, offer healthy challenges, and 
provide relationships.
    Every person, regardless of hardship, disability, and 
prejudice, can excel if given the opportunity. Many people with 
intellectual disabilities yearn for a job. Though they want to 
earn a wage, many have never gotten the chance. For them, a job 
means more than a paycheck. It means truly being a part of the 
community.
    Please do the right thing. This is a nonpartisan issue. I 
promise you that. Do everything in your power to help make a 
difference in the lives of those very special people. I thank 
you for what you're doing.
    [The prepared statement of Senator Massey follows:]

             Prepared Statement of Hon. Becky Duncan Massey

    I want to thank you for asking me to testify before the HELP 
Committee on Thursday, September 18th. As my role of executive director 
of Sertoma Center and being a disability provider for over 21 years, 
coupled with my role in the State Senate of Tennessee, I can bring a 
unique perspective to the hearings.
    I will be reporting on the following:

     Tennessee initiatives.
     Current barriers.
     Suggestions for solutions.

    First we need to address the challenge of addressing policy changes 
for individuals with disabilities. While there is a lot of conversation 
about people first policy, you cannot put individuals into a nice, neat 
box. Individuals with disabilities range a wide spectrum from physical 
to intellectual to mental disabilities. And there is a wide spectrum 
within each of these types of disabilities with factors of age, IQ and 
functioning abilities.
    Recently through an information gathering process, it was learned 
that while 75.2 percent of people in Tennessee without disabilities are 
employed, only 28.2 percent of people with any type of disability find 
work. Likewise, citizens with mental illness or substance use disorders 
have substantial difficulty finding and maintaining employment.
                         tennessee initiatives
    There are a lot of good things happening in Tennessee in working to 
improve employment opportunities and percentages of individuals with 
disabilities. In June 2013, Governor Bill Haslam signed an Executive 
Order establishing the Tennessee Employment First Initiative to expand 
community employment opportunities for Tennesseans with disabilities.
    Employment First is a concept to facilitate the full inclusion of 
people with the most significant disabilities in the workplace and 
community. Under the Employment First approach, community-based, 
integrated employment is the first option for employment services for 
youth and adults with significant disabilities. Integrated employment 
refers to jobs held by people with disabilities in typical workplace 
settings where the majority of persons employed are not persons with 
disabilities, they earn at least minimum wage and they are paid 
directly by the employer.
    The Task Force was asked to identify State policies and procedures 
that create barriers to employment, to make recommendations to 
eliminate those barriers, to forge effective partnerships among the 
related State agencies and other stakeholders and to identify best 
practices to increase opportunities for ``integrated employment.'' The 
Employment First Task Force concluded its first year on August 1, 2014 
and issued a report to Governor Haslam Tuesday of this week. I am 
including parts of their report in this document.
                  tennessee programs that are working
The Department of Labor and Workforce Development
    In 2011, the Department of Labor and Workforce Development was 
awarded a 3-year Disability Employment Initiative Grant to increase the 
capacity of the America's Job Centers and local workforce investment 
areas to meet the needs of Tennesseans with disabilities by training 
Disability Resource Coordinators and Integrated Resource Teams to 
leverage available funding and resources to help Tennesseans with 
disabilities get hired.
The Department of Intellectual and Developmental Disabilities
    In 2012, Tennessee was selected as one of three States to 
participate in the Office of Disability Employment Policy's Employment 
First State Leadership Mentoring Program. The department was awarded 
the grant that provided funding as well as consultation from experts in 
converting sheltered workshops to integrated employment.
Vanderbilt Kennedy Center
    Later in 2012, Tennessee was awarded a Partnerships in Employment 
systems and policy change grant for transitioning youth with 
intellectual and developmental disabilities, funded by the U.S. 
Administration on Intellectual and Developmental Disabilities. Under 
the leadership of the Vanderbilt Kennedy Center, this 5-year grant has 
helped to formalize the statewide employment consortium, the 
TennesseeWorks Partnership, around the three Federal grants now 
operating in Tennessee. This partnership is the unifying structure 
within which all of the grants collaborate and all public and private 
stakeholders come together to pursue the goal of increasing employment 
of Tennesseans with disabilities. Tennessee is only one of two States 
to receive all three national employment grants available of the past 3 
years.
The Tennessee Department of Mental Health and Substance Abuse Services
    TDMHSAS recently worked in partnership with the Tennessee Division 
of Rehabilitation Services to increase the number of individuals with 
serious mental illness and co-occurring mental and substance use 
disorders to obtain and retain integrated employment. In less than a 
year through this program, 154 individuals have been served, with 62 
job placements in a variety of jobs and an average hourly wage of 
$8.07.
The Division of Rehabilitation Services, Department of Human Services
    The Vocational Rehabilitation program, which provides services to 
help working-age individuals with physical and/or mental disabilities 
enter or return to employment, closed 1,966 cases with individuals in 
successful employment in the last Federal fiscal year, and has closed 
1,440 cases in this Federal fiscal year.
Other
    The Tennessee General Assembly has passed and helped fund 
scholarships for the four post-secondary programs for individuals with 
disabilities. These education programs are a 2-year course of study 
which empowers students to achieve gainful employment in the community. 
They help young adults with intellectual and developmental disabilities 
make a successful transition from high school to adult life by 
providing them with career counseling and developing their academic, 
vocational, and decisionmaking skills. It is a comprehensive transition 
program for unique learners, highly motivated young adults whose 
disability is characterized by significant limitations in both 
intellectual functioning and adaptive behavior. Upon successful 
completion of the program, students receive a vocational certificate. 
These students are eligible to apply for Federal Financial Aid for 
tuition assistance and are recognized by Vocational Rehabilitation as 
being tied to employment outcomes.
    There has been a dedicated effort to provide a voice to people with 
disabilities regarding their experiences with long-term support 
programs in Tennessee by emphasizing Stakeholder feedback in the policy 
and planning processes. TennesseeWorks has six community meetings with 
families and individuals with disabilities across the State and also 
collected 2,200 Family Expectation Surveys.
                            current barriers
     A lack of coordination among State and Federal agencies 
that administer funding and programs for individuals with disabilities.
     A lack of adequate funding to support employment efforts 
for all those who need assistance in finding and retaining a job, 
including services such as job coaches, customized employment, and 
individualized supports.
     Inadequacies in service delivery, including difficulty 
accessing services and a lack of flexibility.
     Insufficient opportunities for professional development 
for those who provide services.
     Insufficient resources and opportunities for training and 
post-secondary education leading to employment for individuals with 
disabilities.
     Inadequacies in transportation services to and from job 
sites.
     A cultural mindset of low expectations on the part of 
professionals, businesses, parents, and individuals themselves that 
people with disabilities are unemployable.
     The lack of a high school diploma or other competency 
based vocational diploma that employers want job candidates to have.
     The fear of losing one's benefits if one works. (SSI, 
SSDI, health insurance) Any cuts at all prevent them from being able to 
pay their monthly rent, utilities and other bills.
     Asset limitations. There is no way to save for emergencies 
and other things to help pull them out of poverty. The $2,000 limit 
that was established when the program was started is equal to almost 
$13,000 in today's dollars. The ABLE act could help with this.
     Lack of information or insufficient information about 
benefits.
     The need for Supported Employment, particularly for 
individuals with more significant disabilities.
     The waiting list for services and supports. There are over 
7,000 individuals on the statewide waiting list for services for 
individuals with intellectual disabilities. As a result of this, the 
individuals receiving services in Tennessee are older. The youth with 
disabilities face significant challenges in accessing services and 
supports.
     Presently, there is no direct support for individuals with 
developmental disabilities.
     There is not sufficient funding for Vocational 
Rehabilitation services and other training programs.
     Failure to prepare secondary students for employment while 
in high school and successfully and seamlessly transitioning them to 
adult service systems that can help them obtain jobs.
     The need for long-term supports for some individuals who 
need that level of support to be able to keep their job.
     SSA benefits system is too complex to navigate and 
understand (examples: Work Incentives, PASS Plans, IRWE's)
     Vocational Rehabilitation system is also difficult to 
navigate and they often deem people ``too disabled to work.'' They do 
not focus on those with the most severe disabilities.
     Not enough engagement with employers at the Federal level 
to promote and incentivize employment for persons with disabilities.
     Lack of adequate funding.
                               solutions
     Encourage Memorandum of Understanding among agencies to 
facilitate coordination among programs and produce successful outcomes 
for people with disabilities. Individuals and families struggle to 
navigate complex systems. Many families need to navigate both the 
Social Security Administration and Centers for Medicaid & Medicare 
Services and Rehabilitation Administration. Communication and alignment 
between these service systems would benefit families served by these 
systems and promote better outcomes.

     Pass the ABLE act.
     Increase the asset limits for SSI/SSDI. There could be an 
automatic cost of living inflator put in place even if it cannot be 
adjusted to today's dollars.
     Engage and support businesses in employing people with 
disabilities.
     Ensure every student with a disability leaves high school 
with a smooth transition that would include a choice of (but not 
limited to) post-secondary education, a job training program, or paid, 
integrated employment to the same extent as students without 
disabilities.
     Create policy and infrastructure that allows one to be 
able to move seamlessly from school to adult supports with a minimum of 
duplicative application and assessment information, perhaps by creating 
electronic records much like a person's electronic medical record, that 
could hold all relevant information and be accessed as authorized.
     Support individuals with disabilities and their families 
by increasing their knowledge about the benefits of employment as a 
life goal and about the different supports that are available. Often 
families and individuals themselves do not see employment as a real 
possibility.
     Ensure that all working-age individuals with disabilities 
have access to a system of supports that enables them to obtain and 
maintain employment in the community throughout their lives. Many 
people need some level of support (some long-term supports) in order to 
maintain their employment. Research shows that, for every dollar 
taxpayers spend on supported employment services, they received between 
$1.17 and $1.77 that is otherwise spent on more expensive services with 
far less beneficial and preferred outcomes.
     Better dissemination of cost-effective, HCBS aligned, 
innovative methods for meeting individual needs in person-centered ways 
across State lines.
     Practical technical assistance for providers in how to 
convert from a facilities-based model to an Employment model to align 
with expected CMS guidance on HCBS higher standards and expectations.
     Making One Stop Employment Centers available and 
accountable for ALL job seekers, not just those who can search for 
themselves.
     Encourage businesses to have a more accessible employment 
application process including being able to verbally apply when the 
person is not able to fill out an online or computer application.
     Reevaluate the Ticket to Work program to address the need 
for some individuals to have long term supports to be successfully 
employed.
     Provide incentives to cities to develop and/or improve 
transportation for individuals with disabilities.

    Research confirms that when people with disabilities are connected 
to work experiences in their communities, achieving goals such as 
finding a good place to live, having friends and using their talents 
all become much more likely. For all of us, a good job is about much 
more than a paycheck. It contributes to a sense of accomplishment, 
self-worth, and independence. A meaningful job can make a difference in 
the lives of people with disabilities just as it does for all citizens.
    Every person, regardless of hardship, disability, and prejudice, 
can excel if given the opportunity. Many people with intellectual 
disabilities yearn for a job. Though they are desperate to earn a wage, 
many have never gotten the chance. For them a job means more than just 
a paycheck. It means truly being part of the community.

    The Chairman. Thank you, Senator Massey.
    Dr. Lozano.

 STATEMENT OF ALISON M. LOZANO, Ph.D., EXECUTIVE DIRECTOR, NEW 
   JERSEY COUNCIL ON DEVELOPMENTAL DISABILITIES, TRENTON, NJ

    Ms. Lozano. Thank you, Chairman Harkin and Ranking Member 
Alexander, for inviting me to appear before you today to talk 
about poverty issues for people with disabilities. My 
suggestions today are based on more than 40 years working 
directly with people with disabilities and also having raised 
three children with disabilities, a young lady with 
developmental disabilities and two boys with learning 
disabilities.
    As you mentioned earlier, we still find that 28 percent of 
Americans with disabilities are living in poverty, whereas in 
the general population it is approximately 12.5 percent. I want 
to focus my remarks today on four policies that I would like to 
suggest could be reformed to build success on past legislation.
    The first one is rebalancing the institutional bias in 
Medicaid. Currently, a person receiving Medicaid with a 
significant disability is entitled to be housed in an 
institution, and Medicaid will pay for all expenses involved 
with that setting. If a person with a disability wants to live 
in the community, they must be approved for a waiver, and a 
waiver simply does not cover all of the expenses associated 
with living in the community. Plus there are limits to how much 
the waiver will cover and how many people the waiver will 
cover.
    If the Medicaid system was revisited and the norm of care 
of people with disabilities was the community rather than the 
institution, more money could be realigned to pay for services 
in the community. Depending on the State, the average cost of 
keeping someone in a congregate setting is $120,000 versus 
between $40,000 and $70,000 to support a person with 
disabilities in the community. I have to say that in my 40 
years of working with people with disabilities, I have never 
heard of one person who has moved to the community from an 
institution telling me that they would rather be living in the 
institution.
    Another suggestion is to create an intensive initiative to 
increase knowledge about the Ticket to Work Program and the 
Plans for Achieving Self Support, the PASS program under Social 
Security. Ticket to Work is typical of programs that have been 
introduced in the last 10 to 15 years to stimulate employment 
of people with disabilities. It was introduced to assist people 
to go to work and still maintain their Medicaid eligibility.
    PASS is an excellent program but not well known among 
educators, vocational rehabilitation counselors, or Medicaid 
specialists. In addition to Medicaid coverage, the program 
assists those eligible to find and keep a job.
    However, despite these good programs, the rate of 
unemployment for people with disabilities has remained at 70 
percent for the last 20 years. Both of these programs need to 
receive more attention and publicity.
    Another suggestion is the reauthorization of the 
Individuals with Disabilities Education Act to align with the 
recently enacted Workforce Innovation and Opportunity Act. The 
IDEA is a wonderful piece of legislation that benefits millions 
of children with disabilities and their families.
    My husband and I raised his niece and nephew after their 
mother passed away. Hope, his niece, has a dual diagnosis of 
developmental disability and mental illness and received 
special education services both in Tennessee and Utah. She was 
in our neighborhood school and joined others without 
disabilities for non-academic classes and activities. She 
benefited greatly from being around other children without 
disabilities while she learned academics in a supported 
setting.
    However, her school experience did very little to prepare 
her for life in the community and the workplace. She is now age 
31 and was raised with our other four children without 
disabilities. As a result, she, like many of her peers, had 
expectations that she would always live in the community and be 
employed. She was offered job sampling that consisted of 
folding towels at the YMCA and collecting shopping carts in the 
parking lot at T.J. Maxx.
    However, she was not taught appropriate job setting 
behavior, expectations of the workplace, and other skills that 
those of us who do not have intellectual disabilities learn on 
the job. As a result, she has moved from job to job as her 
behavior has interfered with her job performance. At the 
moment, she is in a workshop setting, still waiting once again 
for supports to be put in place to support her in the 
community.
    But my experience is that the supports take a long time to 
put in place and are not comprehensive enough for her needs. 
The limitations that are placed on vocational services are not 
commensurate with the needs of the individuals. They need to be 
expanded and made more flexible. I suggest that the transition 
planning and services in the language between the IDEA and the 
WIOA match and coordinate so that there is no confusion between 
the State educational agency and the designated vocational 
rehabilitation agency.
    I also would like to suggest, briefly, changes to the tax 
code and tax incentives for people with disabilities. Taxpayers 
who are legally blind may be entitled to a higher standard 
deduction on their tax returns than other people with 
disabilities. For example, people who are deaf should be 
allowed the same tax savings as people who are blind.
    The determination of Substantial Gainful Activity for a 
person who is blind is $1,800 while it is $1,070 for a person 
who has a disability but is not blind. This needs to be 
corrected so all persons with a disability receive the same 
standard deduction on their taxes. A powerful change that would 
change the lives of Americans with disabilities would be to 
eliminate the Federal income tax on their SSDI.
    Also, as mentioned previously, the passage of the ABLE Act 
would provide an opportunity for individuals with disabilities, 
or the families of individuals with disabilities, to create a 
tax-free account that can be used for disability related 
expenses. I know many of the families that I speak to are 
excited at the possibility of being able to save for expenses 
related to their child.
    Speaking from personal experience, the expenses related to 
having a child with a disability are vastly different from the 
child without a disability, particularly as they age. What we 
experienced as a family is that we still had to provide 24-hour 
supervision, transportation, and other expenses that you would 
anticipate a child without disabilities would assume as they 
age. The passage of the ABLE Act would ease the burden of those 
additional expenses so the family could have more flexibility 
in how they manage their finances.
    Thank you very much for the opportunity to appear before 
you today.
    [The prepared statement of Ms. Lozano follows:]

             Prepared Statement of Alison M. Lozano, Ph.D.

    Thank you Chairman Harkin and Ranking Member Alexander and members 
of the committee to appear before you today. I am here to discuss the 
current status of the majority of Americans with disabilities living 
under the poverty level and suggestions to advance Federal policies 
that can improve this problem. My suggestions are based on more than 40 
years directly in the field having worked across the country from New 
Jersey, to Utah, Texas, and Tennessee. I am also the parent of three 
children with disabilities who are now adults.
    I have seen several Federal initiatives introduced that have sought 
to raise people with disabilities out of poverty. And yet we still find 
28 percent of Americans with disabilities living in poverty while in 
the general population it is 12.5 percent. In addition, the median 
earning for a man with a disability is approximately $41,500 while his 
peer without disabilities earn $48,000. For women with disabilities the 
median income is approximately $32,000 while their peer without 
disabilities earn $37,000 (U.S. Census Bureau).
    Today, my remarks focus on four policies that if reformed can build 
on the success of past legislation. We know more than ever before about 
ways to shape policy that will lead to greater independence, 
opportunities, and advances in employability. I will discuss reforms in 
Medicaid, the Ticket to Work program, reauthorization of the IDEA, 
income tax, and passage of the ABLE Act.
             rebalancing the institutional bias in medicaid
    I know that I am not the first person to testify that we need to 
rebalance the bias toward institutional care in Medicaid. Currently, a 
person receiving Medicaid with a significant disability is entitled to 
be housed in an institution and Medicaid will pay for all expenses 
involved in that setting. If a person with a disability wants to live 
in the community they must be approved for a waiver in order for funds 
to be used to support them. Further, each State must first request a 
waiver of the Medicaid law simply to provide for less expensive and 
restrictive home and community-based options. The Medicaid waiver funds 
do not cover housing, food and clothing so these expenses are usually 
paid with each individual's Social Security payment. The waiver funds 
pay for career planning and supported employment, transportation, 
attendant support, assistive technology, behavioral intervention, 
respite, etc. In addition, there are limits in how much the waiver will 
cover and how many people the waiver will cover.
    If the Medicaid system were revisited and the norm for care of 
people with disabilities was the community rather than congregate 
settings, more money could be realigned to pay for services in the 
community. Depending on the State, the average cost of keeping someone 
in a congregate setting is $120,000 versus between $40,000 and $70,000 
to support a person with disabilities in the community.
    In my 40 years working with people with disabilities, I have never 
heard one person who has moved to the community tell me they would 
rather live in the institution. Foundation of increased access to 
employment begins with reforms to the largest safety net for millions 
of people with disabilities--fixing the focus on financially supporting 
institutions isolated from society to at least equal home and 
community-based living is the first important step to raising the 
economic status of people with disabilities. This can be done without 
any additional Federal or State funds needed.
 create an intensive initiative to increase knowledge about the ticket 
   to work program and plans for achieving self support (pass) under 
                            social security
    Ticket to Work is typical of programs that have been introduced in 
the past 10 or 15 years to stimulate employment of people with 
disabilities. It was introduced to assist people to go to work and 
still maintain their Medicaid eligibility. PASS is an excellent program 
but not well known among educators, vocational rehabilitation 
counselors, or Medicaid waiver specialists. In addition to Medicaid 
coverage, the program assists those eligible to find and keep a job. 
However, despite these good programs, the rate of unemployment for 
people with disabilities has remained at 70 percent for the past 20 
years. In fact, the Ticket to Work program has been underutilized in 
many States. PASS plans are relatively easy to submit to the Social 
Security Administration. A major challenge in lack of awareness can be 
an initiative with the Social Security Administration, and the 
Departments of Labor, Education, and Health and Human Services to 
target training and awareness to families and key direct support 
providers.
 reauthorize the idea (individuals with disabilities education act) to 
  align with the recently enacted workforce investment opportunity act
    The IDEA is a wonderful piece of legislation that benefits millions 
of children with disabilities and their families. My husband and I 
raised his niece and nephew after their mother passed away. Hope, his 
niece, has a dual diagnosis of developmental disability and mental 
illness and received special education services both in Tennessee and 
Utah. She was in our neighborhood school and joined others without 
disabilities for non-academic classes and activities. She benefited 
greatly from being around other children without disabilities while she 
learned academics with additional supports.
    However, her school experience did very little to prepare her for 
life in the community and the workplace. She is now age 31 and was 
raised with our other four children without disabilities. As a result 
she, like many of her peers, had expectations that she would always 
live in the community and that she would be employed. She was offered 
job sampling that consisted of folding towels at the YMCA and 
collecting shopping carts in the parking lot at T.J. Maxx. However, she 
was not taught appropriate job setting behavior, expectations of the 
workplace and other skills that those of us who do not have 
intellectual disabilities learn on the job. As a result she has moved 
from job to job as her behavior has interfered with her job 
performance. At the moment she is in a workshop setting waiting once 
again for supports to be put in place to support her in the community. 
But my experience is the supports take a long time to put in place and 
are not comprehensive enough for her needs. The limitations that are 
placed on vocational services are not commensurate with the needs of 
the individuals. They need to be expanded and made more flexible.
    I suggest that the transition planning and services language 
between the IDEA and the WIOA match and coordinate so that there is no 
confusion between the State educational agency and the designated 
vocational rehabilitation agency.
    Offer young people who are receiving special education services 
through the school system the same quality of services offered through 
WIOA to prepare them for competitive employment. But just as important 
is the improvement of the transition services from the schools to the 
vocational rehabilitation system.
changes to the tax code and tax incentives for people with disabilities
    Tax payers who are legally blind may be entitled to a higher 
standard deduction on their tax returns than other persons with 
disabilities. For example, people who are deaf should be allowed the 
same tax savings as people who are blind. The determination of 
Substantial Gainful Activity for a person who is blind is $1,800 while 
it is $1,070 for persons who have a disability but are not blind. This 
need to be corrected so all persons with a disability receive the same 
standard deduction on their taxes.
    A powerful change that would change the lives of Americans with 
disabilities is to eliminate the Federal income tax on their SSDI 
payment. This would allow individuals with disabilities additional 
funds directly in their lives without the need of another program to 
pay the costs of, for example, attendant supports in their homes. Many 
States recognized not taxing SSDI income is good policy--this promotes 
independence away from more costly institutional warehousing.
    The passage of the ABLE Act (Achieving a Better Life) would provide 
an opportunity for individuals with disabilities, or the families of 
individuals with disabilities to create a tax-free account that can be 
used for disability related expenses. I know many of the families I 
meet are excited at the possibility of being able to save for expenses 
related to their children.
    Speaking from personal experience, the expenses related to having a 
child with a disability are vastly different from the children without 
a disability, particularly as they age. My experience is that we still 
had to provide 24-hour supervision, transportation and other expenses 
that you would anticipate a child without disabilities would assume as 
they age. The passage of the ABLE Act would ease the burden of those 
additional expenses so the family could have more flexibility in how 
they manage their finances.
                               conclusion
    Poverty is an ongoing problem for people with disabilities. Almost 
all the families that I worked with across the Nation live below the 
poverty level. We need to have a combination of the issues I raised in 
order to bring these individuals and families out of poverty.
    Medicaid needs to be amended. Schools need to prepare students for 
the workplace and collaborate with vocational programs. The tax codes 
need to be amended to offer relief from the additional burdens of 
services that relate to disability.
    Thank you for the opportunity to appear before you today.

    The Chairman. Thank you very much, Dr. Lozano.
    Mr. Lauer, please proceed.

   STATEMENT OF GEOFFREY M. LAUER, EXECUTIVE DIRECTOR, BRAIN 
             INJURY ALLIANCE OF IOWA, IOWA CITY, IA

    Mr. Lauer. Thank you, Senator Harkin. Chairman Harkin, 
Senator Alexander, thank you for the opportunity to speak with 
you on these issues today. The organizations that I am honored 
to work with provide services, support, and advocate for and 
with hundreds of thousands of Americans with long-term 
disability from brain injury and other causes. Consequently, I 
and my colleagues are keenly aware of many barriers with 
respect to economic self-sufficiency for persons with 
disabilities.
    There are a number of things that I hope to accomplish with 
my testimony and points to make. But, however, before I get 
into those specifics, I wish to thank the committee for their 
support of the Traumatic Brain Injury Act, the TBI 
Reauthorization Act of 2014. As a modest first step, the TBI 
Act has been a tremendous success in catalyzing systems change 
and improvement for Americans with brain injury and their 
families. Yet there is still a lot to do.
    Each day across our country, millions of Americans with 
disabilities are faced with navigating a shifting maze of daily 
challenges related to both disability and income. These 
barriers include an array of environmental, healthcare, social, 
economic, institutional, and attitudinal components ranging 
from transportation to a job or just getting to a grocery store 
to, as Ms. Kwong noted, inexcusably low expectations for people 
with disabilities from teachers and the professionals that 
serve them.
    Federal programs of public assistance are essential in 
providing a safety net to prevent many people from falling into 
extreme poverty. However without question is the fact that many 
income and work support programs have eligibility requirements 
that are blockades to individual and family economic self-
sufficiency.
    One of the most egregious of those eligibility requirements 
are impossibly low programmatic limits to assets. Asset limits 
for a number of Federal programs have the effect of trapping 
individuals with disabilities in poverty.
    Let me share a story about Jason. Jason is a young man with 
a disability in rural Iowa. He receives SSI benefits and 
Medicaid. He began working at a local factory recently with his 
first check totaling $400 a week gross. However, when his local 
caseworker found out about this employment, the response was 
panic. The caseworker told Jason that such income would put his 
benefits at tremendous risk, including his Medicaid healthcare 
benefits. This was shared with him despite there being 
available and well documented State-based options for him to 
retain his Medicaid while working toward genuine independence.
    Jason and his caseworker, like many others, were victims of 
the widespread belief that substantial work is much more a 
threat than an opportunity. Support staff, acting in what they 
feel is the best interest of their clients, are many times the 
ones that are the barriers limiting people with disabilities in 
their movement toward self-sufficiency.
    Recommendations that I have would be that Congress should 
significantly increase the outdated SSI asset limits and, as my 
colleague mentioned, index them to inflation. They haven't been 
adjusted for so many years. In addition, as has already been 
mentioned, the ABLE Act would be a huge step forward in 
providing an opportunity to people to save for expenses and 
have assets.
    Another area is long-term services and supports. Long-term 
services and supports in State Medicaid programs are a means to 
provide medical and non-medical services to seniors and people 
with disabilities in need of assistance. The include services 
to aid individuals with activities of daily living. They are 
also provided through Home and Community-Based Service Waivers.
    Many people who rely on these services face a perilous 
reduction in funding for such services if they become 
substantively employed. The cost of long-term services and 
supports are seldom sustainable at or beyond the current asset 
limits and result in millions of people with disabilities 
concluding that such personal and financial goals are not worth 
the risk of losing such supports.
    Another major barrier are unreasonably long waiting lists, 
as has been mentioned before, by the Medicaid Home and 
Community-Based Services Waiver programs in many States. In 
2012, there were more than half a million Americans on waiting 
lists for an average of more than 27 months. Many States are 
not providing funding to keep HCBS waiting lists reasonable. 
The result is decreased recovery for individuals with 
disability from brain injury and increased nursing home 
placement, increased incarceration, and increased homelessness 
for individuals with disabilities.
    Congress should strive to decouple long-term services and 
supports from other supports such as TANF, SSI, and Medicaid. 
Long-term services and supports are simply a key component for 
being active and being able to be substantively employed and 
being in the community. Congress should also direct the Center 
for Medicaid and Medicare Services, CMS, to require reasonable 
movement on waiting lists for HCBS waivers.
    Finally, with regards to brain injury, the barriers faced 
by Americans with disability from brain injury are much the 
same as those faced by individuals with disabilities from other 
causes. Yet the medical and cognitive disabilities resulting 
from brain injury present a unique set of features that demand 
recognition and response.
    As a provider of information, navigation, and support for 
individuals with brain injury, I've observed that on the 
medical front, the length of stay for essential acute and post-
acute rehabilitation has been pared to a paltry 18 to 21 days 
on average. That pushes people into the community quicker and 
sicker than ever before. People used to be receiving months and 
months of necessary rehabilitation. That's just not the case 
anymore. In too many cases, discharge is not even to a 
community setting but to long-term institutionalization lost to 
any system of care or account.
    These rehab limitations often result in prolonged disorders 
of consciousness with families and communities not prepared to 
cope with the needs, supports, and changes resulting from brain 
injury, and far too many experience financial ruin, 
homelessness, or incarceration. A survivor of brain injury 
stated to me recently that ``We in the brain injury community 
are no longer the silent epidemic. We are the throw-away 
group.''
    Community-based brain injury services are few and far 
between, and all too frequently individuals with brain injury 
are faced with seeking services and supports within systems 
developed for other populations which are resistant to 
expanding to include brain injury. Support staff often don't 
understand or address the cognitive and behavioral challenges 
associated with brain injury, and agencies and programs are 
resistant to funding services for this population and are 
struggling to address their mandated or priority populations.
    Clearly, more funding at both the Federal and State level 
is necessary to deploy medical and long-term services for 
people with brain injury. I thank this committee for your 
recent passage of the TBI Act. That's a big change.
    I also have included in my written testimony 
recommendations developed by the One Voice for Brain Injury 
Consortium in the fall of last year. In that document, seven 
national brain injury organizations presented considered 
congressional responses to the needs facing Americans with 
brain injury.
    Thank you for the opportunity to testify today, and I look 
forward to answering your questions.
    [The prepared statement of Mr. Lauer follows:]

                Prepared Statement of Geoffrey M. Lauer

                              introduction
    Chairman Harkin, Senator Alexander, and members of the committee, I 
am Geoffrey Lauer, the executive director of the Brain Injury Alliance 
of Iowa, the chairman of the Iowa Olmstead Consumer Task Force, and a 
member of the board of trustees of the United States Brain Injury 
Alliance. I have worked for more than 25 years as an advocate and 
service provider with and for individuals with disabilities. The 
organizations I am honored to work with also provide services, support 
and advocate for and with, hundreds of thousands of Americans with 
long-term disability from brain injury and other causes. Consequently I 
am keenly aware of many barriers with respect to economic self-
sufficiency for persons with disabilities.
    The Brain Injury Alliance of Iowa was the second chartered State 
affiliate of the Brain Injury Association of America, founded as the 
National Head Injury Foundation in the early 1980s by my friend and 
colleague Marilyn Price Spivak.
    The Brain Injury Alliance of Iowa more recently is a founding 
member of the United States Brain Injury Alliance which, with its 21 
member States, works to improve the lives of individuals with brain 
injury and their families through awareness, prevention, advocacy, 
support, research and community engagement.
    Iowa's Olmstead Consumer Task Force was formed in 2003 via 
Executive order by then Governor Tom Vilsack to advise the Governors' 
Office on strategies to remove barriers to community living to Iowans 
with disabilities and promote community integration through changes in 
State policy and programming.
    There are a number of things that I hope to accomplish with my 
testimony today. However before I get into the specifics I wish to 
thank the committee for their support of the Traumatic Brain Injury 
(TBI) Reauthorization Act of 2014. The TBI Act is the only Federal law 
that authorizes agencies within the U.S. Department of Health and Human 
Services (HHS) to conduct research and public education programs and to 
administer grants to States and protection and advocacy organizations 
to improve service system access and coordination for the 2.4 million 
civilians who sustain traumatic brain injuries in the United States 
each year. As a modest first step, the TBI act has been a tremendous 
success to catalyze systems change and improvement for Americans with 
brain injury and their families.
    I also wish to thank Chairman Harkin for his superlative service to 
the State of Iowa and to our Nation for more than four decades. His 
deep commitment as a champion for the civil rights of Americans with 
disabilities is deeply appreciated from Cumming, IA (his hometown) to 
every corner of this country.
    Yet as the Chairman well knows there is much yet to do. Each day 
across our country millions of Americans with disabilities are faced 
with navigating a shifting maze of daily challenges related to both 
disability and income. These include an array of environmental, health 
care, social, economic, institutional and attitudinal barriers. These 
range from transportation to a job or to the grocery store to 
inexcusably low expectations for individuals with disabilities from the 
teachers and professionals that serve them.
                       selected barriers--general
Asset Limits
    Federal programs of public assistance are essential in providing a 
safety net preventing many from falling into extreme poverty. However 
without question is the fact that many income and work support programs 
maintain eligibility requirements that serve as blockades to individual 
and family economic self-sufficiency. One of the most egregious of 
these eligibility requirements are impossibly low programmatic limits 
to assets. Asset limits for a number of Federal programs have the 
effect of ``trapping'' individuals with disabilities in poverty. These 
limits have not only been ravaged by inflation, they are ridiculously 
low. For example, the current limits for Supplemental Security Income, 
or SSI, which are set by the Federal Government have been, since 1989, 
set at $2,000 for an individual and $3,000 for a couple or a disabled 
child living with their parents. Had such limits been linked to 
inflation they would be more than $8,500 for individuals and $12,800 
for both couples and families with disabled children today.
    These low limits plague programs such as SSI even with well 
intentioned Federal and State efforts to accommodate employment such as 
Social Security's ``Plan to Achieve Self Support'' (PASS). In fact, 
such programs require such level of sophistication to appropriately 
access, update, and respond to that many fear making critical errors in 
planning and implementing employment. Such errors often result in loss 
of benefits or having to return overpayments and in a belief that 
employment is not worth the risk of the loss of benefits.
    Let me share a story about Jason, which is illustrative. Jason is a 
young man with a disability in Iowa. He receives SSI benefits and 
Medicaid. Jason began working at a local factory and his first check 
totaled $400 a week gross. However when his local caseworker learned of 
this income the response was panic. The caseworker told Jason that with 
such income he would lose all of his benefits, including his Medicaid. 
This was shared with Jason despite there being available and well-
documented State based options for him to retain his Medicaid while 
working toward genuine independence. Jason and his caseworker, like 
many others, were victims of the widespread belief that substantial 
work is much more a threat than an opportunity. Support staff, acting 
in what they feel is the best interests of their consumers are many 
times the ones that are limiting people with disability in their 
movement toward self-sufficiency.
    Individuals with Social Security Disability Insurance (SSDI) also 
face significant asset limits that act as barriers to self-sufficiency. 
SSDI recipients frequently describe a fiscal or financial ``cliff'' 
when seeking to escape public support.
    For example, Tom is an Iowan who experienced a disability after 
many years working in the IT sector. He and his children receive more 
than $3,000 per month in support from SSDI. He relies on Medicare for 
his health care. He is finishing a Masters Degree in Rehabilitation 
Counseling and has a goal to start a small business providing computer 
repair and assistive technology design. However, with his benefits 
threatened with termination if, and when, he earns more than $1,000 per 
month he stands at a ``fiscal cliff'' in that if he is not able to earn 
in the range of $40,000-$50,0000 per year he risks a significant cut to 
his ability to support his family. Tom and hundreds of thousands of 
others like him would benefit greatly from the option of having their 
benefits reduce in relation to their income vs. dropping off at an 
unreasonably low, fixed level. They also need the ability to retain 
their Medicaid and/or Medicare coverage as they re-enter the workforce 
vs. current program rules, which drop such coverage when asset limits 
are met.
    Across the States asset limits are inconsistent, and many times set 
at very low Federal levels, for other Federal programs including 
Temporary Assistance for Needy Families (TANF), the Supplemental 
Nutrition Assistance Program (SNAP), and the Low Income Home Energy 
Assistance Program (LIHEAP).
    The result of such limits is an inability to develop and/or retain 
a modest amount of savings to mitigate against financial set-backs that 
can result in dire outcomes such as eviction or having utilities shut 
off. Savings are also key for individuals with disabilities whose goal 
is self-employment, starting and running a small business, or paying 
for essential medical or assistive technology products not covered 
under insurance.
    The complexity of the income and health insurance systems results 
in many feeling as if it would take, as one individual shared with me, 
``six attorneys and an estate planner'' to successfully navigate the 
impacts of earned income on benefits. Consequently, there is a clear 
and pervasive perception among individuals with disabilities, their 
families and service providers that trying to become economically self-
sufficient, within the current asset limit caps, simply presents too 
high a risk of losing essential medical coverage through Medicaid or 
Medicare as well as income supports through such programs as SSI.
Recommendation--Asset Limits
    1. Congress should significantly increase the outdated SSI asset 
limits and index them to inflation. The SSI asset limits have not 
increased for more than 25 years, effectively shrinking the amount of 
money that recipients can hold in savings. Bringing the limits to at 
least $10,000 for individuals, $15,000 for couples and families with 
disabled children, and then indexing these limits to inflation would 
alleviate needless economic insecurity among individuals with 
disabilities and their families.
    2. Congress should address the ``fiscal cliff'' for individuals 
utilizing SSDI and, in addition, allow an extension of medical benefits 
for individuals working toward self-sufficiency.
    3. Congress should remove asset limits for TANF, SNAP, and LIHEAP. 
This would create a uniform national standard and remove complexity and 
variability across States. It would enable families to receive benefits 
when they fall upon hard times and would enable recipients to build 
savings and plan for the future.
    4. Congress should increase support for disability resource 
facilitation, navigator, and aging and disability resource center 
programs.
Long-Term Services and Supports
    Long-term services and supports (LTSS) in State Medicaid programs 
are a means to provide medical and non-medical services to seniors and 
people with disabilities in need of sustained assistance. Medicaid LTSS 
includes services to aid individuals with activities of daily living 
(ADL) and instrumental activities of daily living (IADL). ADLs include 
eating, grooming, dressing, toileting, bathing and transferring. IADLs 
include meal planning and preparation, managing finances, shopping for 
food, clothing and other essential items, performing essential 
household chores, communicating by phone or other media and traveling 
around as well as participating in the community. LTSS are provided 
both as part of State Medicaid programs as well as within Home and 
Community Based Service Waivers.
    There are two major dimensions of long-term services and supports 
that I wish to highlight. First are the fiscal limitations of State and 
Federal programs (asset limits) that support LTSS essential to economic 
self-sufficiency and independent community living for individuals with 
disabilities. Many individuals face a devastating reduction in funding 
for LTSS if they become substantively employed. The costs of LTSS are 
seldom sustainable at, or modestly beyond, the current asset limits and 
therefore result in millions of persons with disabilities concluding 
that such personal and financial goals are not worth the risk of losing 
such supports.
    The second dimension of LTSS I wish to highlight has to do with 
unreasonably long waiting list for LTSS via the Medicaid Home and 
Community Based Services Waiver programs that States are allowed to 
operate. These programs are intended to waive a Medicaid bias toward 
institutionalization. In 2012, there were more than half a million 
Americans on waiting lists for an average of more than 27 months (PAS 
Center, UC / San Francisco, 2013). Many States are not providing 
funding to keep HCBS waiting lists ``reasonable'' and are inconsistent 
in their scope of prioritization for services. In fact one third of 
States are without a process to prioritize services. The result is 
decreased recovery for individuals with disability from brain injury 
and increased nursing home placement, increased incarceration, and 
increased homelessness for individuals with disabilities.
Recommendation--Long Term Services and Supports
    1. In addition to the recommendations in the section on Asset 
limits (above) Congress should strive to decouple LTSS from other 
supports such as TANF, SSI or Medicaid. The goal must be that if you 
need LTSS you can access them. The sustained availability of LTSS will 
open the door for many individuals who seek to achieve increased self-
sufficiency. These services should be a basic right in support of 
community living with copayments beginning only after significant 
income.
    2. Congress should direct the Center for Medicare and Medicaid 
Services (CMS) to require reasonable movement on waiting lists for HCBS 
Waivers and to deploy consistent methods to prioritize such waiting 
lists based on risk to the individual as well as amount of services 
needed.
Transportation
    As we approach the 25th anniversary of the ADA, millions of 
Americans with disabilities lack access to affordable and available 
transportation. This is especially true for individuals who live in 
rural communities. Across Iowa and across much of the country lack of 
access to regular, reliable and affordable transportation to access 
basic services, education, appointments, health care, and employment is 
still a major barrier to individuals with disabilities. You cannot 
participate if you cannot ``get there.''
Recommendations--Transportation
    1. As Congress works to address how best to rebuild and repair our 
Nation's roads, bridges, railways, and ports, and where and how to 
prioritize investments in public transportation, it is vital to take 
into consideration the needs of people with disabilities.
                    selected barriers--brain injury
    The United States Brain Injury Alliance (USBIA) represents 21 State 
members including the Brain Injury Alliance of Iowa. Through member 
States and their individual members and constituents USBIA works to 
provide basic information and resource for community level services and 
supports. Brain Injury is one of many disabilities that can strike at 
any age. The U.S. Centers for Disease Control and Prevention estimates 
that there were 2.4 million emergency department visits, 
hospitalizations, or deaths associated with TBI alone or in combination 
with other injuries in the United States in 2009. Brain Injury is a 
leading cause of death and disability in the United States that affects 
persons of all ages, races/ethnicities and incomes. Any injury to the 
brain--regardless of type, cause or severity--can change the way a 
person moves, talks, thinks, feels and acts. TBI can cause epilepsy and 
increase the risk for Alzheimer's disease, Parkinson's disease and 
other brain disorders that become more prevalent with age.
    As a result of brain injury being the ``signature injury'' of war 
fighting in the past decade, combined with the increased awareness from 
sports related brain injury in professional and youth sports, one might 
think that awareness of the medical and disability needs of this 
constituency would be better positioned for response. Sadly this is not 
yet the case.
    Many of the barriers to self-sufficiency for individuals with 
disability from brain injury are those faced by individuals with 
disability from other causes. However, brain injury presents a unique 
set of features that demand recognition and response.
    The nature of brain injury is highly variable. Injury is often 
characterized as mild, moderate to severe and outcomes from these 
injuries are variable as well depending on a host of features unique to 
each individual injured, the nature of the injury and the speed and 
acumen of immediate and subsequent response.
    However, those of us providing lifelong information, navigation and 
support for individuals with brain injury recognize that on the medical 
front the length of stay for essential acute and post-acute 
rehabilitation has been pared to a paltry 18-21 days on average. 
Limitations on rehabilitation are pushing individuals with brain injury 
out of rehabilitation and into the community ``quicker and sicker'' 
than ever before. In too many cases discharge is not even to community 
but to long-term institutionalization lost to any system of care or 
account.
    These limitations often result in prolonged disorders of 
consciousness. Families and communities are not prepared to cope with 
the needs, supports, and changes resulting from brain injury and far 
too many experience financial ruin, homelessness, incarceration, and 
death. A survivor of brain injury stated to me recently that we are no 
longer the ``silent epidemic''--we are the ``throw away group.''
    All too frequently individuals with brain injury are faced with 
seeking services and supports within systems of support that were 
developed for other populations of persons with disabilities and which 
are resistant to expanding to include brain injury. Support staff often 
does not understand or address the cognitive and behavioral challenges 
associated with brain injury. Agencies and programs are resistant to 
funding services for this population, as they are struggling to address 
their mandated and/or priority populations.
    Clearly more funding at both the Federal and State level is 
necessary to deploy needed medical and long-term service and supports 
for Americans who have disability from brain injury.
Recommendations--Brain Injury
    1. Congress should pass the TBI Reauthorization Act of 2014.
    2. Attached please find a set of recommendations to strengthen 
existing legislation and programs for individuals with brain injury 
developed by the ``One Voice for Brain Injury Consortium'' in the fall 
of last year. In this document seven national Brain Injury 
organizations present considered congressional responses to the gaps 
and needs facing Americans with brain injury.
    Thank you for the opportunity to testify today. I look forward to 
answering your questions.

    The Chairman. Thank you very much, Mr. Lauer.
    And now, Justin Herbst, welcome and please proceed.

STATEMENT OF JUSTIN HERBST, HUMAN RESOURCES SUPERVISOR, UNITED 
              PARCEL SERVICE, WESTERN SPRINGS, IL

    Mr. Herbst. Good morning, Chairman Harkin and Ranking 
Member Alexander and Senators of the HELP Committee. My name is 
Justin Herbst. I am honored and humbled to be with you today in 
Washington, DC.
    I have cerebral palsy because I was born 10 weeks early, 
and I had a serious stroke when I was only 3 days old. However, 
my disability has never deterred me from achieving my goals. I 
am the perfect example of what the Individuals with 
Disabilities Education Act can do for American children.
    I grew up in Western Springs where I was fully included in 
regular education classes since kindergarten. Throughout 
school, I was encouraged to compete with my able bodied peers. 
I had an Individualized Education Plan and received PT, OT, 
Speech and other Special Education services. I made plenty of 
friends and never felt excluded because of my disability.
    After graduating from Lyons Township High School, I 
attended Southern Illinois University thanks in part to a Pell 
grant and support from the Department of Rehabilitation 
Services. Southern Illinois University is a great school and 
gave me many opportunities to grow as an individual. While at 
Southern Illinois, I received help through the Disability 
Support Services Office, including extra time, note takers, and 
alternative test sites. I am proud to tell you that I achieved 
a 3.49 GPA with a bachelor's degree in history and a minor in 
philosophy.
    The U.S. Government has assisted me tremendously in helping 
me get to where I am today. Through the Illinois Department of 
Rehabilitation Services, I have a personal care assistant to 
help me get in and out of bed, toilet, dress, shower, cook, and 
clean. I will always need the support of a personal care 
assistant, because I am a quadriplegic and I cannot move on my 
own. It is difficult to be a quadriplegic, but it is the life I 
live, and I would not trade it for any other, and I welcome the 
advocacy.
    During college, when I was not working, I received 
Supplemental Security Income, which was approximately $670 a 
month, to help me live independently. I always knew SSI was a 
temporary solution because I wanted to join the workforce and 
make my own success story, and I, indeed, did.
    After graduating from Southern Illinois University, I found 
a wonderful job working at UPS at the Hodgkins, IL facility. 
The UPS Chicago Area Consolidation Hub, also known as CACH, is 
the largest ground package sorting facility in the world. UPS 
is approximately 4 miles from my home. As a UPS employee, I 
receive benefits like medical insurance, dental and vision 
insurance, vacation time, continuing education, and job 
training. I am also eligible to receive 3.5 percent matching 
contributions from UPS to a 401 retirement plan.
    UPS has been extremely accommodating regarding my 
disability. They understand my disability and my strengths, and 
I have always felt like a strong part of the UPS team. Since 
becoming an employee of UPS, I no longer receive SSI benefits. 
I am able to give back to Uncle Sam as I am now a taxpayer. 
Last year, I earned $27,800 working at UPS and paid $6,000 in 
taxes: $4,500 to the Federal Government and $1,300 to the State 
of Illinois.
    I am thankful for my parents, family, friends, teachers, 
therapists, coworkers, Illinois Department of Rehabilitation 
Services, and the U.S. Government, who have all helped me 
become the man I am today.
    Despite all of the successes I have had in my life, I still 
face glaring problems in keeping my job. I am not eligible for 
transportation services from the PACE Disability program 
because of where I live. I live more than three-quarters of a 
mile from a fixed bus route and my job is more than three-
quarters of a mile from a fixed bus route, so paratransit 
services are not available to me. My parents, who are behind 
me, must drive me to work every day. If my parents could not 
drive me to work every day, I would not be able to keep my job, 
and that would be a shame.
    Also, I cannot fully participate in UPS's employer 
sponsored 401(k) retirement plan like other employees. Although 
I am no longer receiving SSI income payments, I am still 
enrolled through the 1619(b) program so that I am eligible for 
Medicaid. This means that if I have over $2,000 in assets I 
will lose my Medicaid benefits, as my colleagues pointed out.
    And, more importantly, if I have over $17,500 in assets I 
will lose my personal care assistant benefits from the Illinois 
Department of Rehabilitation Services. If I lose my personal 
care benefit, I cannot work or even get out of bed. So I'll be 
laying in bed for the rest of my life.
    It is unfair that I work hard at UPS and I am eligible for 
a retirement plan, but the current policies do not allow me to 
save for my retirement like able bodied workers. If I save for 
my retirement, I risk losing the benefits that allow me to live 
a healthy, happy, and full and independent life--my personal 
care assistant.
    I encourage the HELP Committee to eliminate access barriers 
to transportation, housing, and saving for our retirement so 
that people with disabilities can live the American Dream. I 
want my piece of the American Pie.
    Thank you for giving me the opportunity to speak with you 
today. It was an honor.
    [The prepared statement of Mr. Herbst follows:]

                  Prepared Statement of Justin Herbst

    Good Morning Chairman Harkin and Ranking Member Alexander and 
Senators of the HELP Committee, my name is Justin Herbst. I am honored 
and humbled to be with you today in Washington, DC.
    I have cerebral palsy because I was born 10 weeks early and I had a 
serious stroke when I was only 3 days old. My disability has never 
deterred me from achieving my goals.
    I am the perfect example of what the Individuals with Disabilities 
Education Act can do for American children. I grew up in Western 
Springs, IL where I was fully included in regular education classes 
since Kindergarten. Throughout school, I was encouraged to compete with 
my able-bodied peers. I had an Individualized Education Plan and 
received PT, OT, Speech and other Special Education services.
    I made plenty of friends and never felt excluded because of my 
disability. After graduating from Lyons Township High School, I 
attended Southern Illinois University thanks to a Pell grant and 
support from the Department of Rehabilitation Services (DRS).
    Southern Illinois University is a great school and gave me many 
opportunities to grow as an individual. While at Southern Illinois, I 
received help through the Disability Support Services Office including 
extra time, note-takers and alternative test sites. I am proud that I 
graduated with a Bachelor's Degree in History, a minor in Philosophy, 
with a solid 3.49 GPA.
    The U.S. Government has assisted me tremendously in helping me get 
to where I am today.
    Through the Illinois Department of Rehabilitation Services, I have 
a Personal Care Assistant to help me get in and out of bed, toilet, 
dress, shower, cook and clean. I will always need the support of a 
personal care attendant, because I am a quadriplegic and I cannot move 
on my own. It is difficult to be a quadriplegic, but it is the life I 
live and I would not trade it for any other.
    During college when I was not working, I received Supplemental 
Security Income, which was approximately $670 a month, to help me live 
independently. I always knew SSI was a temporary solution because I 
wanted to join the workforce and make my own success story.
    After graduating from Southern Illinois University, I found a 
wonderful job working at UPS at the Hodgkins, IL facility. The UPS 
Chicago Area Consolidation Hub is the largest ground package sorting 
facility in the world. UPS is approximately 4 miles from my home. As a 
UPS employee I receive benefits like medical insurance, dental and 
vision insurance, vacation time, continuing education and job training. 
I am also eligible to receive 3\1/2\ percent matching contributions 
from UPS to a 401(K) retirement plan. UPS has been incredibly 
accommodating regarding my disability--they understand my disability 
and my strengths--and I have always felt like a strong part of the UPS 
team, able to give back and work independently.
    Since becoming an employee of UPS, I no longer receive SSI 
benefits--I am now a taxpayer!
    Last year I earned $27,800.00 working at UPS and paid $6,000 in 
taxes: $4,500 to the Federal Government and $1,300 to the State of 
Illinois.
    I am thankful for my parents, family, friends, teachers, 
therapists, co-workers, Illinois Department of Rehabilitation Services, 
and the U.S. Government, who have all helped me become the man I am 
today.
    Despite all of the successes I have had in my life, I still face 
glaring problems in keeping my job:
    I am not eligible for transportation services from the PACE 
Disability program because of where I live. I live more than three 
quarters of a mile from a fixed bus route and my job is more than three 
quarters of a mile from a fixed bus route, so paratransit services are 
not available to me. My parents must drive me to work every day. If my 
parents could not drive me to work every day, I would not be able to 
keep my job.
    Also, I cannot fully participate in UPS's employer sponsored 401(K) 
retirement plan like other employees. Although I am no longer receiving 
SSI income payments, I am still enrolled through the 1619(b) program so 
that I am eligible for Medicaid. That means that if I have over $2,000 
in assets I will lose my Medicaid benefits; and more importantly, if I 
have over $17,500 in assets I will lose my Personal Care Attendant 
Benefits from the Illinois Department of Rehabilitation Services. If I 
lose my Personal Attendant I cannot work, or even get out of bed!
    It is unfair that I work hard at UPS and I am eligible for a 
retirement plan, but the current policies do not allow me to save for 
my retirement like able-bodied workers. If I save for my retirement, I 
risk losing the benefit that allows me to live an independent, happy 
and healthy full life--my personal care attendants.
    I encourage the HELP Committee to eliminate access barriers to 
transportation, housing and saving for our retirement, so that people 
with disabilities can live the American Dream.
    Thank you for giving me the opportunity to speak with you today--it 
was an honor.

    The Chairman. Well done. Thank you very much, Justin.
    Thank you all for wonderful testimoneys. We'll start a 
round of 5-minute questions now.
    I will start with Ms. Kwong. You mentioned you had mixed 
experiences with your State's Department of Rehabilitation 
agency, which was sort of limiting you. How did you overcome 
that discouragement and low expectations from some of your 
counselors? What was that experience like?
    Ms. Kwong. For me, although my parents did not speak 
English, they knew the value of an education. I was very 
privileged enough to have very supportive parents who told me 
at a young age that you should go to a university. You are 
capable of going to a university and succeeding there. They 
were a huge support. They drove me to my activities, so they 
were physically there, and they were emotionally very 
supportive.
    And as you had mentioned when you were doing my 
introduction--I was very privileged also. I applied, qualified, 
and was eventually honored as a Gates Millennium Scholar. So I 
did not have to necessarily be restricted or depend on my DOR 
counselor to financially pay for my college.
    But, basically, their low expectations and their vision for 
me was after I finished high school, although I had a 4.3 GPA, 
I was not allowed to go to college, because I had to go to an 
independent training center, and then go to a 2-year community 
college or a trade school, and then work at a factory or a call 
center, because statistics reveal that individuals with 
disabilities do not graduate from college, so they were 
protecting me.
    The Chairman. You were at Berkeley.
    Ms. Kwong. Correct.
    The Chairman. That's the University of California, right, 
at Berkeley?
    Ms. Kwong. Correct.
    The Chairman. How accommodating have they been for you?
    Ms. Kwong. I think for the most part they've been--at 
least, the disability office--they've been very accommodating 
in providing alternative test formats to textbooks as best they 
could, and also in providing tutoring for subjects such as 
statistics. There were some issues when I attempted to take a 
foreign language with different faculty in various departments 
at the university.
    But, overall, the disability services program has been 
instrumental, and they also offered a class that discussed 
basically interview skills and talked about the student 
exclusionary rule and kind of exposed us to various 
opportunities and various policies out there that could help us 
achieve self-sufficiency. So the course was definitely a big 
part of my knowledge and my professional development that I 
have today.
    The Chairman. As a point of information, Ms. Kwong, I was 
recently out near Berkeley a couple of weeks ago to visit a 
place called DREDF, the Disability Rights Education and Defense 
Fund. I don't know how close they are. I don't know all my 
directions out there. But they're very good. If you ever need 
any help or information, assistance, advice, that's a great 
group. I don't know if you're familiar with them or not.
    Ms. Kwong. Somewhat. Thank you for the information.
    The Chairman. DREDF, it's called, but it's out there and 
they're great people.
    Senator Massey, when you were talking about needing further 
collaboration between entities--and that's sort of a question I 
have for Dr. Lozano, too, and others. Even as long as I've been 
involved with disability policy and laws, I still get confused. 
There are so many different tentacles out there. When I go out 
and meet with groups or meet with people in Iowa or other 
places, all of a sudden, I just realize how confusing it must 
be for somebody.
    I understand what happens is as we go through years here in 
the Congress, we address one problem and we put that aside, and 
then we address another one. Pretty soon, silos get built up, 
and you have all these different strings out there. Can you 
help us think about how do we start getting this kind of 
collaboration where you just don't have a mine field out there 
that you have to weave through to get the supports and services 
that a person needs?
    Senator Massey. Thank you, Chairman. It's a difficult 
question. I know in Tennessee, you have people that do have--
whether they're working with an adult provider or they have a 
great family that is advocating for them and helping them 
through the system, it's still difficult. And then you have a 
lot of folks out there that really don't have anybody helping 
them through the system. I know we didn't really address folks 
with mental illness as much today, and a lot of those folks 
really don't have the people that are helping them navigate.
    So I think, in Tennessee, we're going to do a memorandum of 
understanding between our State agencies. We'll have to see how 
well that goes. I know I've worked with a group of providers 
and some of the staff at the Department of Intellectual and 
Developmental Disability looking at regulations that were 
duplicative. Of course, you'd think that might be easier than 
not, but it's like you say. There's the silos. But oftentimes 
you just have to do everything two and three and four times.
    I reached out to a lot of the advocates and the providers 
in the State before I came over here on Monday, and they sent 
me a lot of suggestions. One of the things was to come up with 
kind of an electronic--similar to an electronic medical record, 
but that would--if somebody was applying for this or applying 
for that, they could have one record, and they could release it 
so the next agency could access it so they wouldn't have to 
fill it out two and three and four and five times every time 
they do something.
    It's difficult, but anything will be an improvement because 
there are a lot of road blocks there. I appreciate you all's 
efforts, and I think convening a group of folks that have had 
to deal with that and establishing a work group with some 
employees of CMS and Social Security and some of the grassroots 
people that have faced the barriers and say, ``OK. Look at 
this.''
    The Chairman. I'm going to yield to Senator Alexander. But 
I just heard here that sometimes these things are so confusing 
that even the support staff, the agency workers, get confused 
and give misinformation to people.
    Senator Massey. Absolutely.
    The Chairman. Senator Alexander.
    Senator Alexander. Senator Massey, we've talked about the 
ABLE Act here and the asset limits. Everyone has mentioned the 
asset limits. As you think about the Tennesseans with whom you 
work, what would be the effect of the ABLE Act on those 
individuals?
    Senator Massey. Thank you, Senator Alexander. I think it 
would be a huge impact on folks that have active families that 
could put some money aside for their individual without fear of 
hurting their benefits. A lot of these families--unfortunately, 
one of their dreams is to live 1 day longer than their child, 
because they're just not certain that the systems are in 
place--even if they've got good providers--to really take care 
of them. This would give them some peace of mind.
    The folks that I worry about a little bit more--probably 
two-thirds of the folks we serve in our residential programs 
have no families or they're from very indigent families. So 
they would not have the ability to open up the savings account 
and put really anything in it. That's why I think it would--
coupled with maybe looking at the $2,000 asset limit on 
benefits.
    If one of our individuals work--and we've served some 
fairly severely challenged folks at Sertoma, and a lot of them 
are aging. Over half are over 50. A couple are in their 
eighties. The systems are a lot better for living long lives 
now, because a lot of these folks were only supposed to live to 
their teens.
    They might be able to build their assets up to maybe 
$3,000. But then they're able to have it to plan for 
emergencies and to help with their poverty level and to do 
things as opposed to having to spend it the second it gets over 
$2,000 for fear of losing the benefits. So I think we need to 
look at that as a two-pronged approach.
    The ABLE Act will help hundreds of thousands of folks 
across the country and I know a lot in Tennessee, and it will 
be very appreciated. So I hope we pass it soon.
    Senator Alexander. Let me ask you one other thing on a 
little different subject. I'm sure you must have been involved 
with Governor Haslam's Executive orders which refocuses the way 
Tennessee spends the available money. The idea would be to 
shift from paying around the clock residential care to paying 
for more limited and less costly services like personal 
assistants with the idea being that you could help more 
individuals.
    What's your thought about that? Do you think that's a good 
trend to shift priorities in that way? Is it actually going to 
be of assistance to more people?
    Senator Massey. Thank you, Senator. They're still working 
on fine tuning that. They have gone around the State and met 
with providers and stakeholders about that. It would be moving 
it more to almost a managed care system. So there's pros and 
cons with that, and it will be basically a capped waiver.
    The good part is that more people would be allowed to be 
served. I've talked to many families. I had one mother 1 day 
come in my office in tears and said that she had to lose 
everything she had to be able to get services for her son, who 
was significantly behaviorally challenged. Your heart breaks 
for these folks.
    If we could get more folks served, that will be wonderful. 
My concern is that it is a capped waiver, and as the 
individuals get older, as their parents pass away, and they 
really don't have any other caregiver, that personal assistance 
won't work and that cap won't work. Hopefully, there's going to 
be a seamless transition so that they can get the services they 
need as they age.
    They really do increase significantly--your folks with 
Down's get early onset Alzheimer's, and there's just different 
challenges there that we've experienced at my agency. So I'm 
hopeful. I'm going to be working with the departments there and 
doing what I can to give input on tweaking it as they work to 
write that new waiver.
    Senator Alexander. Thank you very much, Senator Massey.
    The Chairman. I want to return just briefly to the ABLE 
Act, which I'm for and I hope we do get it passed. But keep in 
mind it only applies to people who have money. If you've got 
money, you're fine. But you used the terms, two-thirds of 
people with disabilities don't have families with money. For my 
family and my nephew, maybe that would be OK. But so many 
people are indigent, and they don't have that money.
    But that's OK. It's a step in the right direction. Just 
keep in mind that the ABLE Act is only good for age 26 and 
under. There's a lot of people out there who are older than 26. 
Justin, how old are you now?
    Mr. Herbst. I'm 27.
    The Chairman. So it wouldn't even apply to him. When we 
first started developing this ABLE Act, we talked about--we 
wanted to make it $100,000--any age. CBO came in with a score 
on it and said it was $20 billion over 10 years. That sounds 
like a lot of money, but it's only $2 billion a year, and that 
money doesn't just sit there. It's invested. It's growing. It's 
used in the economy, and it could be used by any age.
    It seems to me that would be a small price to pay for the 
individuality, the peace of mind that parents would have about 
their children growing old. If you really had $100,000 you 
could put away without losing all your benefits, that could 
really enable you to get the transportation you need, to get 
the housing you need, and to make sure that when you got older, 
you would have some ability to use that money to live on. But 
now it's only $25,000, and you have to be age 26 or under.
    Like I said, it's better than nothing. But it really ought 
to be what we started out with, and that would be $100,000 with 
no age limit--anybody--to get it. But we couldn't get it 
because of the so-called cost on it. I wanted to make that 
clear. We need to do something also for the indigent people who 
don't have the ability and don't have the families that have 
the money or the siblings to put that money away.
    Mr. Lauer, you also talked about support being so complex 
that caseworkers don't understand it. We rack our brains on 
this. How do we improve training for people so that they do 
understand and they don't get confused? I get confused but I'm 
not on this every day. We have other things. But caseworkers 
who are out there--how do we get them better trained?
    Mr. Lauer. Senator Harkin, I think that that is a point of 
question. We have a lot of turnover in Iowa and across the 
country amongst the individuals who are turned to for those 
kinds of solid responses and information on how to navigate the 
system. When you talked about this being a mine field, it very 
much is.
    Having more focus on the folks who are out there helping 
navigate--mine sweepers, if you will--and there are a couple of 
programs that have already been shown to be effective. You have 
appropriations in the Older Americans Act to offer Aging and 
Disability Resource Centers. The ADRCs are a significant 
component. So putting more support into those ADRCs and in the 
D in the ADRC so that people can get rapid, reliable, and 
relevant information is big.
    In the area of brain injury, I can tell you specifically 
that it's even more compounded because, for many people, not 
only navigating a system that is complex, to begin with, is 
siloed, has a huge range of changing factors with inconsistent 
responses, but also the tool that you're using to navigate it--
your brain, your cognition, and having a cognitive disability 
makes it even more complex for individuals with brain injuries 
or families.
    What we've found in the brain injury community and in many 
of our State member organizations, the United States Brain 
Injury Alliance, as well as the Brain Injury Association of 
America, is a program called Resource Facilitation. It's just 
exactly what people are asking for, which is help us figure out 
how to get through these systems. What we do is hire and train 
staff to know both the disability component, the medical 
component of brain injury, as well as tool up and stay aware of 
these many changing systems so that we're able to provide that 
reliable information.
    Sadly, we're not just providing it to people with 
disabilities. We're oftentimes the ones who are educating the 
folks who are supposed to already know about these systems. 
It's not that they don't have a motivation to, but, again, the 
systems are complex. The siloes are complex, and people don't 
just show up with one need, as you mentioned. This is a big 
deal. They have co-occurring disorders. As my colleague 
mentioned, mental health and brain injury go together--lots of 
different pieces.
    But having navigators that are focused and having funding 
to support that specialty skill set would make a big 
difference, because there are too many programs out there to 
probably focus on.
    The Chairman. Senator Alexander.
    Senator Alexander. Thank you. This committee and the 
Congress and the President recently reauthorized the Workforce 
Investment Act, and part of that was about helping students 
with disabilities transition from high school to college or 
good paying jobs. That was one of the major focuses. I wonder 
if any of you have had a chance to evaluate the changes that 
were in that Act and have any comment on them or other changes 
we still need to make.
    I know, Dr. Lozano, you made a number of suggestions in 
your testimony, and I wonder whether you've had a chance to 
review the changes in that law or not.
    Ms. Lozano. Let me just say that I think one of the most 
important things that we can do is to use some of the changes 
that were made in that Act, specifically around preparation for 
employment and how to use the system--if we could combine that 
with some of the recommendations that come out with, hopefully, 
the reauthorization of IDEA.
    One of the biggest problems is the transition from school 
into the workplace. I happen to know details of this transition 
problem, not only because I've had children that have been in 
that system, but also my husband is a vocational rehabilitation 
counselor. So he works daily with this issue.
    I think there is a lack of collaboration between our 
systems, which has already been mentioned previously, and I 
think we need to look anew at how those systems can work 
together for the desired outcome of employment. I mentioned my 
child who has a developmental disability and also has mental 
illness. She had great expectations that she would be employed. 
This has not happened successfully for her at this point, part 
of the reason being that there are not the supports in place to 
give her a true employment experience. Some of this, of course, 
has to do with funding. But some of it also has to do with the 
lack of preparation that she received in the school system.
    Senator Alexander. Does anyone else have a comment on that?
    Ms. Kwong.
    Ms. Kwong. I think, as I previously mentioned, a lot of 
times, in order to be able to obtain successful full-time 
employment, you have to have a good resume and work experience. 
As you're going through school, academically, I believe that 
being well rounded and having actual work experience while 
you're going through academics is important in building up your 
resume, building up professional development, learning what 
workplace expectations are.
    If there are restrictions as we go through school as 
students--``Oh, you can't make this much because you'll lose 
your SSI even though you're not full-time employed yet''--then 
students are discouraged. Those are the workplace disincentives 
that are making us not want to go out and gain those necessary 
work experiences to help us be better equipped and to build 
those resumes. Oftentimes, not only are the employers hesitant 
about whether students with disabilities or individuals with 
disabilities can serve as functioning members of the workforce, 
but also sometimes ourselves because we have not had that 
experience.
    I think more opportunities for students or for individuals 
as they transition to go out and have some sort of internship 
or part-time experience can help build individual confidence as 
well as show employers, not just tell them, that, ``Look, I've 
worked before and I've been successful and I was productive.''
    Senator Alexander. Thank you, Mr. Chairman.
    The Chairman. I just want to say, Ms. Kwong, Senator 
Alexander and I and our staffs worked very hard to get this new 
Workforce Investment Act called the Workforce Innovation and 
Opportunity Act. One part of that is--and a big part of it, I 
hope--is to mandate that the VR agencies now in States must 
work with students in school that are under IEPs or IDEA 
programs to give them internships, summer jobs, summer 
coaching, that type of thing, just exactly what you're talking 
about.
    That legislation just got signed into law, I think, in 
July. Hopefully, we'll see a big move in that direction to help 
young people get the kind of work experiences, buildup their 
resumes, just like you said. I didn't know if you knew that 
that was in that new piece of legislation. But it's exactly 
what you're saying.
    Ms. Kwong. Thank you so much.
    The Chairman. Justin, I want to ask you about work. You 
said that you work, you've got a great job, and you're working 
for a great company. But you said that you can't participate in 
the company's 401(k) and simultaneously preserve your Medicaid 
and personal care attendant benefits.
    Mr. Herbst. I know. I know. It's absolutely ludicrous. I 
went in, and I just heard, if I go over $17,500 that I lose my 
personal care benefits, and I was like, ``What?'' It's like 
when you're going to Halloween and you're left with an empty 
candy pumpkin. You reach in for the candy, and you don't find 
any, and you're like, ``Where's the candy?''
    It was like I didn't really know what the limits were until 
I saw $17,500. And it's really discouraging to have that limit 
placed upon you and just didn't know that there is a limit. You 
feel like there's so many limitations, and you really can't go 
beyond them to move to a further independent goal.
    When you feel like you're limited, what purpose is there in 
saying, ``I got a 401(k). I want to buy my wife a house, and I 
want to have children, and I want to provide for them,'' when 
you see a limitation. I'm just saying that it's really 
discouraging.
    The Chairman. I have to say this again. I have a nephew who 
is quadriplegic. He has lived a full life, and still is, quite 
frankly, but he also got married, had children, and has always 
had support services no matter how much money he made. How did 
he do it? Because he was injured in the military.
    Under the VA. I know we've heard a lot of problems about 
the VA. But I'll tell you that all my experiences with the VA 
have been wonderful, both with Kelly, my nephew, and also his 
father, a World War II veteran.
    But under the VA, you can make as much money as you want, 
and you still get the personal attendant services that he 
needs, like you, to get up in the morning, get out of bed, get 
bathed. But he can go to work and he can make money. If we can 
do that for our disabled veterans--and it's proven valuable. 
He's a taxpayer, like you. It would seem to me that these asset 
limits--and I think I heard this from all of you--are nonsense.
    But here's the problem. Every time we talk about raising 
these asset limits, we get back from OMB--and I don't care 
whether it's a Democratic administration or a Republican 
administration--cuts across them all--we get back from OMB the 
woodwork effect. Do you all know what I'm talking about? It's 
that people who are now perhaps not doing these things, perhaps 
being cared for by their families, will come out of the 
woodwork now because you raised these asset limits, and it will 
cost us a lot of money.
    I don't buy that. I never have. It may cost us, but you're 
still working and paying taxes. Even if there is some, 
``woodwork'' effect, OK, but they're going to be working and 
they're going to be paying taxes. So the budgetary impact is 
not as much as what people--they assume the woodwork, that they 
would come out, but they don't assume the other end of it, 
where they're paying taxes in.
    The budgeting around here is nonsense. But I don't need to 
get into that. But they look at the expenditures and they don't 
look at the other side of the ledger at all, and that's what we 
have to confront on appropriations committees. Every time we do 
appropriations or we want to change these laws like this, we 
see the outgoing money, but we don't take into account the 
money that would be coming into the Treasury from people who 
are working.
    Anyway, I didn't mean to go off on that. But I think you're 
all aware of it. We just need to make sure that we address it 
in a better manner than we have in the past.
    I want to ask one other question both of Mr. Lauer and Dr. 
Lozano. Senator Massey had an interesting suggestion. She said 
that maybe we should have something like a medical electronic 
record where everything is put in one place and it can be used 
by anybody in any one of those silos to access it so you don't 
have to continually fill out different paperwork. Does that 
have some semblance of credibility? Can we do something like 
that?
    Mr. Lauer. I think we can, Senator. I think the healthcare 
industry is being pushed in that direction pretty quickly. One 
of the big challenges, I think, for many people with 
disabilities is the tracking and being able to respond 
consistently to the regular reporting and requests for 
information from all the different kinds of organizations that 
they're encountering. If their information was able to be kept 
in a consistent place, updated consistently, it would probably 
do a great deal to reduce the confusion and, frankly, the 
inability of people to find records.
    I know that in the population of people with brain injury, 
obviously, there are some memory issues that people can have, 
and trying to keep track of records and being able to respond 
can be very difficult. So I believe that would be beneficial.
    The Chairman. Dr. Lozano.
    Ms. Lozano. I also think it would be very helpful to have 
even like a clearinghouse for records of people with 
developmental disabilities. I know when you go from one program 
to another, they'll request sometimes an IQ repeatedly, time 
and time again. It seems like a waste of effort and a waste of 
money, certainly, to do that.
    My only concern is the confidentiality issue. I think this 
is particularly important when it's for people with mental 
illness. So I think that would be something that we would have 
to examine very closely before or as this was established. But, 
once again, I think it would be a very good idea to do that so 
that we could reduce some of the duplication of tests and so 
on.
    The Chairman. Senator Massey.
    Senator Massey. I think to address that issue, the 
individual would sign a release for that information. So you 
would have that safeguard on there for the confidentiality. 
That way, it would be released only with their permission.
    The Chairman. By the way, I need to make a correction. 
Regarding the ABLE Act, I misspoke. I said age 26. If the 
disability occurred before age 26, you're still OK; you can 
participate. I misspoke on that. But if you're disabled after 
age 26, you're out of luck, and that doesn't seem to be right.
    On the Traumatic Brain Injury bill that passed the House 
this summer, it passed the Senate on Tuesday of this week and 
goes back to the House. They're supposed to be in today, maybe 
tomorrow. They'll either bring it up then, because we worked it 
out pre-conference with them, but if they don't, they'll bring 
it up when we come back in a lame duck session. So it's 
basically done.
    Mr. Lauer. Thank you. That's excellent.
    The Chairman. I just wanted to let you know that.
    Mr. Lauer. I appreciate that, Senator Harkin.
    The Chairman. The bill called the Community Integration Act 
that I introduced earlier this year to get rid of the Medicaid 
institutional bias--well, it's there. Obviously, I don't think 
it's going to go anywhere this year. We're about done. We'll go 
into a lame duck session. You never know, but probably not. 
It's for future Congresses to wrestle with.
    But it seems to me--and I think I read it in one of your 
testimoneys. Someone said that the waiver ought to be the other 
way around. You ought to have to have a waiver to get 
institutionalized.
    Was that you, Dr. Lozano? One of you said that.
    Ms. Lozano. Yes, I did. I said that. I think that would be 
a wonderful boon, that you had to ask for a waiver to go into 
an institution rather than the other way around.
    The Chairman. That's the way I feel, too. But, hopefully, 
future Congresses will take that up and finally get rid of that 
institutional bias.
    Do any of you have anything that you wanted to add that I 
didn't ask or Senator Alexander didn't ask but maybe you didn't 
quite point out in your testimony that you would like to bring 
up before we go?
    Yes, Senator Massey.
    Senator Massey. Thank you, Mr. Chairman. Just one thing. 
Going back to talking about the asset limit and the $2,000, 
while I do think it needs to be totally readjusted, I think at 
the very minimum--because of the woodwork effect and the 
problems there, at the very minimum, if a cost of living 
inflator could be put on it so it's gradually going up and not 
stuck there forever, that would at least be a step in the right 
direction.
    We just need to remember that there are the barriers, and 
if they work, oftentimes in a minimum wage job, it's not enough 
to lose their benefits over if they do. So we just really need 
to be looking at that. I would love to see a work group 
actually looking with both the folks from CMS and SSI and some 
folks that were actually affected by this to really give it a 
good hard look and make some recommendations.
    The Chairman. Thank you. I think it ought to be adjusted 
up, as some of you said, so it would be at the same level it 
was 20 years ago when it was enacted, which is around $13,000, 
and then index it. To me, that is the proper way to go.
    Did anybody else have anything?
    I'm sorry. Justin.
    Mr. Herbst. I think there's very limited housing where I 
live. It's not that the housing doesn't exist. But as I was 
telling Mark, I think it's not really community oriented. You 
don't want to go around and see a bunch of Walmarts and 
Walgreens and not really go to any bars or any areas where I 
can socialize.
    I'm 27 years old, I need to socialize, and I need to find a 
wife. Honestly--and I love my parents, but they know and I know 
that I want to move out and find a wife. I'm looking for more 
community oriented housing, and I'm looking for more places to 
just show my extroverted self. I think the extroverted nature 
of myself needs to come through. I would just really appreciate 
some more community oriented housing. Thank you.
    The Chairman. You know, this is going out over C-SPAN and 
everything.
    [Laughter.]
    Would you like to just say what your email address is?
    Mr. Herbst. No, I would not. But thank you, sir.
    [Laughter.]
    The Chairman. Mr. Lauer.
    Mr. Lauer. It feels like The Bachelor here. That's great.
    A couple of additional points, Senator Harkin. Thank you. 
One is transportation. As Congress looks to rebuild and enhance 
America's infrastructure and transportation from bridges to 
highways, really, a focus on transportation for people with 
disabilities has to be kept front and center. That is just a 
perennial issue, a challenge in Iowa and rural Iowa and across 
the country.
    A second piece that I want to make sure to emphasize is, 
again--even though we do have waivers, and I'd like to have a 
waiver from the waivers or have it reversed--the waiting lists 
that many people face across this country are, frankly, 
unreasonable, unreasonable from a Supreme Court decision 
framework from the Olmstead decision. I know that you've been a 
champion of that.
    But I really do think that Congress, through the Center for 
Medicaid Services, focusing on CMS and also perhaps the 
Department of Justice, should look at that and encourage or 
demand that those waiting lists be reasonable. For people with 
brain injury, waiting for services is effectively being 
services denied, and the loss of being able to have access to 
those supports impacts their rehabilitation.
    The final thing I'd like to share with you, Senator Harkin, 
is a special thank you, and I want you to hear this. I wish to 
thank you, Chairman Harkin, for your superlative service to the 
State of Iowa and to our Nation for more than four decades. 
Your deep commitment as a champion for the civil rights of 
Americans with disabilities is deeply appreciated from Cumming, 
IA, to every corner of this country. On behalf of my fellow 
Iowans and people around this country with disability services, 
thank you.
    The Chairman. Thank you very much, Mr. Lauer.
    [Applause.]
    Thank you all very much. Look, I'm retiring from the Senate 
but not from the fight. I'm still going to be involved. I'm 
going to be bugging him, see. After I get out of here, I'll 
knock on his door.
    But this is an ongoing development. We're making some 
progress. We are. We're better off than we were last year or 20 
years ago. But we're not quite there yet. On transportation, 
we're making some good progress. We've got quite a ways to go. 
Taxis--we're now getting taxis that are accessible. Mayor de 
Blasio of New York now has committed--and the city council 
moved that 50 percent of all taxicabs in New York City will be 
fully accessible by 2020. Pittsburgh came on. They're going to 
have 25 percent of theirs accessible by 2017. This is now 
spreading around the country.
    I went to London, England about 3 or 4 years ago. Every 
taxicab in London is fully accessible, every single one of 
them. We can't do that here? Of course, we can, and we can have 
better public transportation also.
    In employment, we're making good progress. Business owners, 
like David Abney, the CEO of UPS, have committed themselves to 
really have affirmative action, to go out and employ people 
with disabilities. About a year and a half ago, I was 
privileged to go up to Walgreens up in Connecticut to their 
distribution center. Mr. Wasson, who is the CEO of Walgreens, 
pointed out that at that time, 40 percent of all the people 
that worked there were disabled, 40 percent. And as he said to 
the assembled CEOs and me--and Pete Sessions from the House was 
there--said, ``I don't do this out of the goodness of my 
heart.'' He said, ``This is my most productive distribution 
center.'' He now has 50 percent of the people employed there.
    But with minor changes, little things you could do here and 
there, a person with a disability can be fully productive, 
actually more productive in many cases than people without 
disabilities. I'll give another plug. Mr. Wasson has got his 
board of directors to agree that they have a goal of 10 percent 
of all of their employees in all their stores will be people 
with disabilities.
    So these things are happening. I think for a lot of young 
people, especially with disabilities, their future, Ms. Kwong, 
is getting brighter and brighter for employment, and not just 
substandard employment but real, competitive, integrated 
employment.
    Thank you very much for your kind words.
    Thank you, Senator Alexander, for being a great partner 
through this and so many other things.
    And to all of my friends here, I look forward to maybe 
being out there the next time we get together. But it's been 
wonderful to work with the disability community at large all 
over America. You've been a great inspiration to me through all 
my endeavors, and I just can't tell you how much I have 
appreciated your input, even when you beat me up sometimes--
you've got to do more, you've got to do more. But that's good. 
That kind of advocacy is very good.
    With that, thank you all very much, especially to the panel 
here today. It's onward, with better employment opportunities, 
clearer lines of how people work to get the system to work so 
that they aren't losing their benefits when they go to work, 
and for young people like Ms. Kwong to make sure that they have 
every possibility of fulfilling their hopes and their dreams 
here in America.
    Thank you all, the committee will stand adjourned.

    [Whereupon, at 11:08 a.m., the hearing was adjourned.]

                                  [all]
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