[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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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]