[Senate Hearing 115-686]
[From the U.S. Government Publishing Office]


                                                        S. Hrg. 115-686

                     SUPPORTING ECONOMIC STABILITY
AND SELF-SUFFICIENCY AS AMERICANS WITH DISABILITIES AND THEIR FAMILIES 
                                  AGE

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

                                HEARING

                               BEFORE THE

                       SPECIAL COMMITTEE ON AGING

                          UNITED STATES SENATE

                     ONE HUNDRED FIFTEENTH CONGRESS


                             SECOND SESSION
                               __________

                             WASHINGTON, DC
                               __________

                             JULY 18, 2018
                               __________

                           Serial No. 115-20

         Printed for the use of the Special Committee on Aging
         
                  [GRAPHIC NOT AVAILABLE IN TIFF FORMAT]         

        Available via the World Wide Web: http://www.govinfo.gov
        
        
                              ___________

                    U.S. GOVERNMENT PUBLISHING OFFICE
                    
35-284 PDF                 WASHINGTON : 2019 




                       SPECIAL COMMITTEE ON AGING

                   SUSAN M. COLLINS, Maine, Chairman

ORRIN G. HATCH, Utah                 ROBERT P. CASEY, JR., Pennsylvania
JEFF FLAKE, Arizona                  BILL NELSON, Florida
TIM SCOTT, South Carolina            KIRSTEN E. GILLIBRAND, New York
THOM TILLIS, North Carolina          RICHARD BLUMENTHAL, Connecticut
BOB CORKER, Tennessee                JOE DONNELLY, Indiana
RICHARD BURR, North Carolina         ELIZABETH WARREN, Massachusetts
MARCO RUBIO, Florida                 CATHERINE CORTEZ MASTO, Nevada
DEB FISCHER, Nebraska                DOUG JONES, Alabama
                              ----------                              
                 Kevin Kelley, Majority Staff Director
                  Kate Mevis, Minority Staff Director



                                CONTENTS

                              ----------                              

                                                                   Page

Opening Statement of Senator Susan M. Collins, Chairman..........     1
Statement of Senator Robert P. Casey, Jr., Ranking Member........     2

                           PANEL OF WITNESSES

Kelly Nye-Lengerman, Ph.D., MSW, University of Minnesota, 
  Institute on Community Integration, Research and Training 
  Center on Community Living, Minneapolis, Minnesota.............     6
Benjamin Wright, Father and Business Owner, Wilmington, North 
  Carolina.......................................................     8
Edward Mitchell, Independent Living Specialist, Jackson, 
  Tennessee......................................................    10
Jack Stollsteimer, Deputy State Treasurer for Consumer Programs, 
  Pennsylvania Office of the State Treasurer, Harrisburg, 
  Pennsylvania...................................................    12

                                APPENDIX
        Prepared Witness Statements and Questions for the Record

Kelly Nye-Lengerman, Ph.D., MSW, University of Minnesota, 
  Institute on Community Integration, Research and Training 
  Center on Community Living, Minneapolis, Minnesota.............    34
    Questions submitted for Dr. Kelly Nye-Lengerman..............    49
Benjamin Wright, Father and Business Owner, Wilmington, North 
  Carolina.......................................................    54
    Questions submitted for Benjamin Wright......................    55
Edward Mitchell, Independent Living Specialist, Jackson, 
  Tennessee......................................................    56
    Questions submitted for Edward Mitchell......................    64
Jack Stollsteimer, Deputy State Treasurer for Consumer Programs, 
  Pennsylvania Office of the State Treasurer, Harrisburg, 
  Pennsylvania...................................................    72
    Questions submitted for Jack Stollsteimer....................    73

                  Additional Statements for the Record

Pennsylvania Constituent Support Letters for ABLE................    76
Joe Joyce, Chair, Autism Society of America......................    91


 
   SUPPORTING ECONOMIC STABILITY AND SELF-SUFFICIENCY AS AMERICANS WITH 
                  DISABILITIES AND THEIR FAMILIES AGE

                              ----------                              


                        WEDNESDAY, JULY 18, 2018

                               U.S. Senate,
                        Special Committee on Aging,
                                                    Washington, DC.
    The Committee met, pursuant to notice, at 9:31 a.m., in 
room SD-562, Dirksen Senate Office Building, Hon. Susan M. 
Collins (Chairman of the Committee) presiding.
    Present: Senators Collins, Tillis, Burr, Fischer, Casey, 
Gillibrand, Donnelly, Warren, and Cortez Masto.

    OPENING STATEMENT OF SENATOR SUSAN M. COLLINS, CHAIRMAN

    The Chairman. This hearing will come to order.
    Good morning. In 1983, the life expectancy of a person 
living with Down syndrome was just 25 years. As a result of 
advances in health care, a baby born with Down syndrome today 
can expect to live past 60 years, a dramatic increase in life 
span. To make the most of this progress, parents have been 
trying to ensure a secure future for their disabled children, 
and adults with disabilities have been working to enhance their 
own financial security. But that has proven challenging as 
poverty statistics demonstrate.
    More than 56 million people in the United States live with 
a disability, and about 34 million of them are of working age, 
between 16 and 64. Last year this Committee examined issues 
such as educational and vocational training, and social and 
housing supports, that can help lead to a stable career and a 
more satisfying life for many people who have a disability.
    It has not always been easy, however, for people with 
disabilities who can and want to work to save for their own 
futures. federal law caps the assets of a single person with 
disabilities who receives Supplemental Security Income, better 
known as SSI, at just $2,000.
    Depending on the specific disability, some individuals may 
require certain supports, ranging from help with basic daily 
activities to transportation and housing as they grow older.
    Being able to save money to make necessary modifications to 
a car, or a home, or just to pay for unexpected life events, 
can preserve the independence of individuals with disabilities. 
And aging parents of disabled children should also feel secure 
about their children's futures as they enter into their own 
retirement years.
    Today we will discuss policies that enable individuals with 
disabilities and their families to save, and thus achieve 
greater financial security as they grow older. Improving 
retirement security has been one of the major themes of the 
Aging Committee.
    One such policy is the Stephen Beck, Jr. Achieving A Better 
Life Experience Act, also known as ``The ABLE Act,'' which was 
authored by Senator Casey, the Ranking Member on this Committee 
and Senator Burr. It has shown promising results in states 
since it became law four years ago, and I want to applaud both 
Senator Casey and Senator Burr for their extraordinary 
leadership.
    ABLE accounts have since been launched in more than 30 
states. They allow individuals with a disability diagnosis by 
age 26, and their families, to establish tax-advantaged savings 
accounts. Similar to the 529 college savings plans, these 
savings accounts can be used to set aside contributions not to 
exceed $15,000 a year to cover qualified expenses such as 
education, housing, and transportation.
    Recently I met with members of the Autism Society of Maine 
who shared that Maine is on the verge of establishing its own 
ABLE program. I am happy to report that Bangor Savings Bank 
will kick off Maine's ABLE program with pilot accounts starting 
very soon. I know the Autism Society and many others in Maine 
are eager to see this program launched, and they welcome the 
opportunity for greater savings for disabled individuals and 
their families.
    It is important to note that approximately 27 percent of 
Americans with disabilities live in poverty. That is the 
highest rate of any subgroup in the country. This statistic 
demonstrates why we must provide these individuals with more 
opportunities for financial freedom and stability, particularly 
during their older years. And it underscores why the ABLE Act 
is so important.
    As we will hear today, parents of children with 
disabilities were once discouraged from saving for their 
children's future. This led to needless worry, sleepless 
nights, and a lack of financial security. Today, however, ABLE 
accounts offer a means to savings that can turn the tide. These 
options provide a sense of security to help produce a brighter 
future full of hope.
    I am now delighted to turn to Ranking Member Casey, who 
suggested that we have this hearing, for his opening statement.

  OPENING STATEMENT OF SENATOR ROBERT P. CASEY, JR., RANKING 
                             MEMBER

    Senator Casey. Chairman Collins, thank you very much for 
holding this hearing. I want to thank you for making it 
possible, because we want to explore today the economic health 
of people with disabilities and, of course, their families as 
they age.
    All American families worry about their economic future, 
especially as we grow older. For people with disabilities, 
finances, savings and income are of great concern.
    In 2015 the National Disability Institute commissioned a 
study that indicated that people with disabilities were more 
than two and a half times as likely to have difficulty covering 
their expenses than those without disabilities. The same study 
found that people with disabilities were almost twice as likely 
to be unable to cover a moderate-sized emergency expense 
compared with those without a disability.
    There are many reasons why people with disabilities and 
their families are in an especially precarious financial 
circumstance. I think our witnesses will provide us with some 
of these details today.
    I want to emphasize that as people with disabilities age 
and as their families age, their economic challenges may become 
worse. There are almost 750,000 people with intellectual and 
developmental disabilities over the age of 60 who are living 
with their families. In addition, almost a million families 
with parents over 60 years of age are supporting their adult 
sons or daughters who have an intellectual or developmental 
disability.
    People with disabilities are less likely to be employed and 
much more likely to be underemployed; therefore, their earnings 
over time are less than the average citizen. And because their 
primary support person, usually a parent, has had to care for 
them, often quitting their jobs to do so, the family's income 
has been curtailed significantly.
    With fewer opportunities to earn income and significant 
barriers and penalties when trying to save, people with 
disabilities and their families often are in difficult--and 
that is an understatement--difficult financial situations.
    Congress has removed some of the barriers to savings in 
order to plan for the future. Senator Collins mentioned the 
work that Senator Burr and I did to pass the Stephen E. Beck 
Achieving a Better Life Experience, known as the ABLE Act, that 
passed with overwhelming bipartisan support in both Houses of 
Congress back in the latter part of December 2014. I want to 
thank Senator Burr for his work and for the work that was done 
in both Houses to get that done.
    The ABLE Act makes it possible now for people with 
disabilities to save for future expenses, as Senator Collins 
mentioned, in a manner similar to a 529 college savings plan. 
They now can save for a variety of expenses whether it is 
education, health care, assistive technology, paying for a 
move, for example, to obtain a job--a whole range of expenses 
that are important to their lives. They can save for their 
future without losing their federal disability benefits such as 
Supplemental Social Security Income or Medicaid.
    With the opening of ABLE accounts in now 39 states, over 
21,000 people have been able to save what is now over $105 
million, an average of $5,000. That $5,000 is, of course, 
$3,000 more than the limit prior to ABLE becoming a reality. 
And these families and these individuals can save up to 
$100,000. Having assets means that people can open their own 
businesses, they can save for retirement, and they can purchase 
the technology that they need.
    But we do need to do more. ABLE is not available to people 
who acquired their disability after their 26th birthday. There 
are still limits to monthly earnings that keep people with 
disabilities underemployed and not able to accept a promotion 
at work without losing their benefits.
    As a Nation, we have begun to address these barriers to 
economic health for people with disabilities and their families 
as they age. I look forward to hearing more from our witnesses 
and learning what you think are the next steps that we should 
take to continue to help the 56 million Americans with a 
disability to be economically healthy.
    Thank you, Madam Chair.
    The Chairman. Thank you very much.
    I see that we have been joined by both Senators from North 
Carolina, which shows their wisdom today, but I particularly 
want Senator Burr to know that I have been raving about the 
work that you did with Senator Casey on the ABLE Act. I am sure 
your staff can get you a transcript of the compliments.
    Senator Casey. You can add mine to that.
    The Chairman. First I would like to introduce Dr. Kelly 
Nye-Lengerman--I hope I got that right--from the University of 
Minnesota's Institute on Community Inclusion. Her work as an 
expert social worker for disability provider organizations in 
both community- and facility-based programs has enabled her to 
help many individuals with disabilities to achieve economic 
security.
    I will now turn to Senator Burr, the co-author of the ABLE 
Act, to introduce our next witness, who is from his home state.
    Senator Burr. Madam Chairman, thank you very much, and 
welcome. It is my pleasure to welcome Ben Wright from 
Wilmington, North Carolina. Ben is a small business owner, an 
advocate, and a proud parent of four children, two of which 
have Down syndrome. I want to thank the Committee leadership 
for inviting Ben to testify.
    I also want to thank the Ranking Member, Senator Casey, for 
his work over the years in helping to lead our bipartisan 
effort to pass the ABLE Act and to improve upon the initial 
success of the ABLE Act.
    Some have called the ABLE Act the ``most significant piece 
of legislation affecting the disabled since passage of the 
Americans with Disabilities Act almost 30 years ago.'' Senator 
Casey and I got involved in an effort to pass ABLE over 10 
years ago. This has been one of the toughest pieces of 
legislation that made the most common sense of anything I have 
tackled in the time that I have been here. The amount of 
families around this country that are impacted, not just 
parents but grandparents and relatives, who can now have the 
comfort of knowing that a child that has a fruitful life in 
front of them also has the security of a nest egg to make sure 
that they have whatever they need, regardless of what they run 
into.
    Ben and his wife, Amy, are truly incredible people, and I 
am lucky to have served them in the United States Senate. Ben 
and his wife started Beau's Coffee Shop in 2016 to employ 
people with disabilities. I think I surprised Amy one day when 
I all of a sudden showed up in Beau's Coffee Shop, no notice, 
only to order a smoothie. And today the coffee shop has grown 
to employ over 70 individuals and has been named ``Bitty & 
Beau's'' after their two children.
    Since opening, they have shown countless customers that all 
Americans are capable of working alongside each other. Just 
this past year, Ben's wife, Amy, received the CNN Hero of the 
Year Award for her advocacy and continued efforts to improve 
the lives of others.
    In addition to Bitty & Beau's, Ben is a financial planner 
where he helps families save for the future. Ben's financial 
planning business also employs a number of Americans with 
disabilities, and Ben currently serves on the board of the 
North Carolina ABLE Program. Ben continues to raise awareness 
of ABLE programs and educate families on the benefits of 
opening an account.
    I think it is safe to say that the ABLE Act has begun to 
change the way we think of federal benefits for Americans with 
disabilities just as Ben and his wife have begun to change the 
way Americans view people with disabilities. Ben, welcome. 
Thank you for being here.
    Thank you, Madam Chairman.
    The Chairman. Thank you very much, Senator Burr, for your 
leadership.
    Next I would like to introduce Edward Mitchell from 
Jackson, Tennessee. In 2003 Mr. Mitchell was the victim of a 
hit-and-run accident that left him paralyzed. He now lives 
independently with the help of a nurse and his parents. He is a 
strong and passionate advocate for people living with 
disabilities and works to educate others about the benefits of 
the ABLE accounts, which he himself is using.
    I now will turn to the Ranking Member to introduce our 
witness from his state.
    Senator Casey. Thank you, Chairman Collins. And before I 
get to Jack Stollsteimer, I do want to say Mr. Mitchell gave me 
two of his cards today. One is paper, of course. This is 
especially neat. It is made out of metal, so I will pass it 
around. I think we should try these in the Senate. They are 
more durable cards.
    But I am grateful to introduce Jack Stollsteimer. I have 
known Jack for a long, long time. I will not say he is an old 
friend. I will say he is a friend of long standing. That sounds 
a little better. But Jack is Deputy Treasurer of the 
Commonwealth of Pennsylvania. He resides--still in Havertown, 
Pennsylvania?
    Mr. Stollsteimer. Yes, sir.
    Senator Casey. His duties as Deputy Treasurer include the 
management of the 529 college savings program--programs, 
plural, I should say--and, of course, the Pennsylvania ABLE 
program. Jack was charged with planning for and implementing 
the Pennsylvania ABLE program and oversaw the opening of the 
program in April 2017. Through his leadership, the Pennsylvania 
ABLE program has been the fastest growing ABLE program in the 
country. The program is also one of the most heavily invested 
in the country, with the average account balance over $6,000, 
more than $1,000 higher than the national average.
    In addition to his current duties, Jack has been a 
dedicated public servant in our Commonwealth, serving as one of 
the Assistant District Attorneys in Delaware County and then 
also the Assistant United States Attorney for the Eastern 
District of Pennsylvania. His current responsibilities in the 
Treasurer's office include consumer programs and public 
engagement.
    Jack, thank you for being here today. Thanks for your 
testimony.
    The Chairman. Senator Tillis, I know that Mr. Wright is 
your constituent as well, and I want to give you a few moments 
to make any comments.
    Senator Tillis. First, I want to welcome you all. It is 
good to see you again. I ordered coffee, by the way, Senator 
Burr, when I went to Bitty & Beau's. But I also ended up with 
some Facebook friends as a result of that visit, and I was 
paying attention to his opening comment, but I was taking a 
picture of you and your family to post it on Facebook, so 
hopefully some of my friends out there will see it. But thank 
you for the work. And I think really the coming together of the 
community, the facility that you are in, to make it work or 
help you make the numbers work. But when we were out there, we 
talked about what more we can do to really provide more 
opportunities for a lot of people who want to work. They want 
to work in part to make money. They want to work in part to 
have independence. But, boy, I tell you what, if you are having 
a down day and you can get down to North Carolina and visit 
Bitty & Beau's, I guarantee you the rest of your day is going 
to be fantastic. Just the joy and the optimism is palpable.
    Thank you all for being here.
    The Chairman. Thank you very much, and we will now start 
with our witnesses. Dr. Nye-Lengerman, we will have you go 
first.

  STATEMENT OF KELLY NYE-LENGERMAN, PH.D., MSW, UNIVERSITY OF 
  MINNESOTA, INSTITUTE ON COMMUNITY INTEGRATION, RESEARCH AND 
  TRAINING CENTER ON COMMUNITY LIVING, MINNEAPOLIS, MINNESOTA

    Dr. Nye-Lengerman. Good morning. Thank you, Chairman 
Collins, Ranking Member Casey, and members of the Special 
Committee on Aging, for the opportunity to speak with you 
today. My name is Kelly Nye-Lengerman, and I am a researcher at 
the University of Minnesota's Institute on Community 
Integration and Research and Training Center on Community 
Living.
    Millions of individuals with disabilities and their 
families do not access the American Dream in the same way that 
others do. They do not have the same pathways to savings and to 
earnings.
    First, people with disabilities are more likely to be 
unemployed, underemployed, and living in poverty. People with 
disabilities are more than twice as likely to live in poverty, 
and family units that include a member with a disability have 
average household incomes nearly 45 percent less than the 
average American household.
    Second, the act of caregiving for a family member with a 
disability creates challenges to families that prevent them 
from having a regular income, accessing health care, or saving 
for the future. Caregiving duties range from simple to complex, 
such as helping someone go to the grocery store, transferring 
someone from a wheelchair to the tub for daily bathing, or 
administering complex interventions such as tube feeding or 
suctioning. These responsibilities often increase as the family 
member with a disability ages, and they become more difficult 
to perform as family members who are caregivers age. And 
estimates currently suggest that 25 percent of caregivers for 
adults with disabilities are over the age of 60.
    And, third, as individuals with disabilities and their 
family members age, they can become more reliant on public 
support programs. Our current policies often require that 
individuals and families remain in poverty to maintain 
eligibility for these programs.
    As an addendum to my written testimony, I incorporated four 
family profiles that included their perspectives on policies 
that support economic security for families, and I would like 
to use some of those family experiences to highlight some of 
the research findings from our center.
    First, we found that without paid employment, people with 
disabilities do not retire nor have savings later in life. The 
majority of people with intellectual and developmental 
disabilities did not retire because they did not have paid 
employment. The Hofer-Van Ness and Rigotti families have high 
expectations for their adult children with disabilities to have 
a job, and more importantly, their children, Andy and Nick, 
want to work, too. Without the right supports, finding, 
securing, maintaining, and succeeding in a job have been 
incredibly difficult. Having a job and saving for their future 
ensures that Nick and Andy have more economic security.
    Strong employment policies such as the Workforce Innovation 
and Opportunity Act improve public work force systems that 
support people with disabilities, including youth, to have a 
job and find a career. WIOA establishes competitive, integrated 
employment for people with disabilities as a clear national 
priority.
    Our studies have also indicated that a family member who 
supports an individual with a disability has drastically 
reduced abilities to earn and save due to high caregiving 
demands. In one study in partnership with the Arc of the United 
States, we found that 90 percent of respondents reported that 
they had out-of-pocket expenses, and of that group, nearly 40 
percent of families spent between $5,000 and $20,000 annually.
    All four families explained that they had out-of-pocket 
expenses for their family member that included co-pays, medical 
supplies, paid support, and transportation. While they have 
been able to manage these expenses, these expenses can also 
represent a significant economic burden to families. Policies 
that support pathways to savings such as ABLE can potentially 
offset the burdens of out-of-pocket expenses. The ability to 
save without penalty or ineligibility for other support 
programs opens new doors for families to financially be able to 
provide more equitable footing from which to save in the 
future.
    Additionally, access to paid leave is recognized as a 
critical component for being able to keep and maintain a job 
when complications of a disability or family member needs 
arise. Other benefits offered by employers such as flexible 
work schedules, health care, flexible spending accounts, and 
supportive supervisors have been identified as family 
caregivers as essential to help keep them working when a family 
member with a disability has needs.
    Ms. Michele Hilgart shared an example of how her employer 
customized a position with her so that she could meet her son 
Ben's care needs, maintain her employment, and keep the 
family's health insurance coverage.
    We also know through research that supporting people with 
disabilities to live in family homes or their own homes is 
significantly less costly to society. Institutional settings 
cost an average of $128,000 annually compared to $51,000 
annually for care in family homes. Community settings save 
money, and most people with disabilities and their families 
prefer to live and be a part of their community.
    But we also found that family caregivers are in urgent need 
of relief and support. As family caregivers age, their need for 
respite care increases. In one study, 92 percent of families 
who use respite care reported that they were unable to find 
respite staff or providers. Three of the four families profiled 
have a family member living at home, and when asked, these 
families would not have it any other way. Their family member 
with a disability was an integral part of their family unit. 
Ms. Debbi Harris said, ``We are not a family without Josh. And 
if we did not have him, we would be broken.'' Josh's care 
includes 24-hour skilled nursing, but is heavily supplemented 
by his mother, his father, his two brothers, his 58-year-old 
uncle, and his 85-year-old grandfather.
    To keep people with disabilities in family homes or their 
own homes, a strong direct support work force is needed. Direct 
support professionals provide essential services to individuals 
with disabilities and their families so they can live, work, 
and participate in the community, as well as give family 
caregivers much needed respite. The direct support work force 
is one of the highest demand professions in the U.S. today and 
a lifeline for people with disabilities and their families.
    In closing, I urge the Senate to include policies that 
address these three critical needs:
    Continue to encourage savings and earnings, and ABLE is a 
great pathway to savings as it should be extended to people 
with disabilities beyond the age of 26 years of age, at the 
same time removing barriers to earnings that people with 
disabilities face, such as the substantial gainful activity 
limit.
    Support the development and retention of a strong direct 
care work force, and without this work force, people with 
disabilities will not be able to earn and save for the future.
    And, last, enhance our meager family support system and 
respite care. Without support, families earn less and multiple 
generations are financially fragile. We need a support system 
that makes it possible for families to earn and save for their 
future and the future of their family members with 
disabilities. Long-term investments in employment and 
caregiving make it possible for people with disabilities and 
their families to work, save, and plan for their older years.
    Thank you most sincerely for the opportunity to share 
testimony today and your interest in this topic.
    The Chairman. Thank you very much for your statement.
    Mr. Wright.

   STATEMENT OF BENJAMIN WRIGHT, FATHER AND BUSINESS OWNER, 
                   WILMINGTON, NORTH CAROLINA

    Mr. Wright. Chairman Collins, Ranking Member Casey, 
distinguished members of this Committee, thank you for inviting 
me to testify this morning. It has been exciting over the past 
few years to witness the passing of the ABLE Act, the ABLE to 
Work Act, and the ABLE Financial Planning Act, spearheaded by 
Senators Burr and Casey. While there is still much work to be 
done, such as signing the TIME Act into law, I want to thank 
everyone on this Committee for all that you have done and 
continue to do for people and families living with intellectual 
and developmental disabilities.
    As the father of four children, I spend a lot of time 
thinking about their futures, especially what life might look 
like after high school for our two youngest children, Beau and 
Bitty, who have Down syndrome. As most of you know, it is 
estimated that over 70 percent of adults with I/DD are 
unemployed. That is a staggeringly high unemployment rate that 
should not be tolerated in this country. Imagine any other 
group where seven of ten people did not have jobs, and I think 
people might take to the streets. And yet in regards to this 
group of unemployed people, there is no outrage from the 
majority of the American citizenry, only bewilderment on the 
faces of those who endure this discrimination and hopelessness 
in the eyes of those who love and advocate for them.
    It begs the question: Why the complacency? I believe what 
we are really dealing with is not a classic unemployment 
problem driven by the economy, but a bona fide social and 
cultural problem. Doesn't it seem that people with I/DD are not 
ascribed the same value in our society as those of us without 
disabilities? What other group of law-abiding citizens can be 
paid a sub-minimum wage just because of who they are?
    And yet, paradoxically, before dinner tonight, every one of 
us in this room could acquire the equivalent of an intellectual 
or developmental disability due to an unforeseen event. And 
then what? Having a disability is nothing to be ashamed of; it 
is part of the human condition, so much so that the U.S. Census 
reports that one in five Americans has a disability. And yet, 
here we are--with an eye-popping 70-percent unemployment rate.
    So what can we do? I believe if we can find ways to help 
people without I/DD see the intrinsic value in people with I/
DD, accepting and including them should come more naturally.
    My wife, Amy, and I have given this a lot of thought, so 
much so that two-and-a-half years ago, we decided to open a 
coffee shop called ``Bitty & Beau's Coffee,'' where we employ 
almost 80 adults across three coffee shops and everyone earns 
above minimum wage. Initially, we thought this was a great way 
to reduce the unemployment rate. But what we quickly realized 
was that the real power of the coffee shop was its ability to 
show people without disabilities what is possible. The point of 
Bitty & Beau's Coffee is not that people with I/DD can work in 
coffee shops, but that people with and without disabilities 
could and should be working together, shoulder to shoulder, in 
almost every type of business.
    People need a fresh perspective on this issue. They need to 
know and understand that people with I/DD are not broken. What 
is broken is the lens through which we view people with I/DD. 
And Bitty & Beau's is a new lens, and it is changing the way 
people see other people, offering a new perspective that, once 
seen, cannot be unseen.
    If the goal of this hearing is to support economic 
stability and self-sufficiency as Americans and their families 
with disabilities age, efforts such as ABLE and addressing 
policies that inhibit work for people with disabilities are 
critically important. But we must also resolve to help people 
without disabilities see people with disabilities, like my 
children, Beau and Bitty, as worthy of that charge.
    Thank you for your time.
    The Chairman. Thank you very much for your moving 
testimony.
    Mr. Mitchell.

 STATEMENT OF EDWARD MITCHELL, INDEPENDENT LIVING SPECIALIST, 
                       JACKSON, TENNESSEE

    Mr. Mitchell. Hello, Chairman Collins, Ranking Member 
Casey, and members of the Committee. My name is Edward 
Mitchell. I come today as an individual with a spinal cord 
disability.
    Let me share a bit of background on myself. I have not 
always lived with a disability. My disability occurred on March 
29, 2003, in Jackson, Tennessee. On that ill-fated day, my life 
was nearly destroyed when I decided to go for a bike ride with 
my little brother before going to my first high school job at 
Little Caesars under great owners, Kevin and Rachel Colbert. As 
I rode my bike, I noticed a fast-moving truck coming from the 
rear. After I gave my hand signals, I switched into the left-
bound lane where my life was changed. A truck crossed over the 
double lines and clipped me from behind, throwing me into a 
ditch. I landed on my back and my neck, and it caused an 
incomplete fracture to my C5-C6 vertebrae.
    From that point on, my life had taken a turn. I had become 
a victim of a hit-and-run that continues to remain unsolved. As 
it stands today, I get around with the use of a powered 
wheelchair. I do not have feelings in my legs--I do have 
feeling in my legs but no voluntary movement.
    Since that time, I have graduated high school. I have 
attended Lane College on a full ride, graduating magna cum 
laude, and then went on to earn my MBA from Union University. I 
currently work with the Jackson Generals minor league baseball 
team going on four years, and I am also an independent living 
specialist at the Jackson Center for Independent Living.
    As they say, it is hard to keep a determined individual 
down. But I still need nursing care assistance with my 
nighttime routine and getting up and getting ready for the next 
day. I also need assistance with home modifications as well as 
vehicle modifications. I need to try to figure out what I can 
do and what changes need to be done for my family to take care 
of me and assist me, especially as we all grow older.
    One of the consequences of my accident is my father lost 
his job and had to dip into his savings. He used some of his 
401(k) savings to help with expenses. He later took a job out-
of-state just to keep my family in a stable environment.
    Now, I know you are probably wondering why do I keep taking 
part-time jobs. I have been gaining experience. I have 
completed my master's, but I cannot accept a full salary for 
any significant amount of money because that would impact my 
nursing care benefits. If I accept a full salary, I will make 
too much and lose my disability benefits. But I would not make 
enough directly to pay for nursing care, even if I gave my 
whole salary to a nursing care agency.
    When it comes to my support services, I am limited in 
nursing hours through my Medicaid waiver. My mother still 
assists me with about 35 hours of support weekly. As 
demonstrated in these examples, living a life with a disability 
in many circumstances has inherent financial challenges and 
extra expenses that are typically not held by my able-bodied 
peers. Luckily I have been able to take advantage of one tool 
that has recently become available to individuals with 
disabilities, and that is to open an ABLE account.
    On one of these evenings, my mother was up late winding 
herself down after helping me when she stumbled across the 
Tennessee ABLE program. ABLE accounts are bank accounts that 
allow people with special needs to save money without 
jeopardizing their disability benefits. ABLE accounts are from 
the ABLE (Achieving a Better Life Experience) Act, and they are 
established and managed on a state level.
    Once we stumbled upon ABLE, I received support from the 
ABLE National Resource Center managed by the National 
Disability Institute. We realized that this was a lifeline. 
Money saved in a traditional bank account counts against the 
ability to qualify for disability benefits or Medicaid waiver 
programs.
    As a result, individuals with special needs are not able to 
build savings with the money they earn or that they receive 
from an inheritance, gifts, or life insurance policies. This 
means individuals must live with very little money if they want 
to receive government aid or, as in my case, qualify for 
Medicaid waiver programs that pay for nursing care.
    I have tried to put away a little bit from each check since 
opening my ABLE account. The ABLE program gives my parents 
peace of mind because they are aging. My parents want to make 
sure that I am able to take care of myself and be as 
independent as possible, because the biggest life expenditures 
I have are nursing care, housing, and especially wheelchair 
transportation, which is extremely astronomical in my case, 
also reaching up to $100,000. The ABLE program helps with being 
self-sufficient.
    That being said, ABLE accounts are only available to 
individuals with disabilities that encountered their disability 
before their 26th birthday. As I mentioned, my injury occurred 
when I was a teenager; therefore, I am allowed to open an ABLE 
savings account for my future. If something similar was to take 
place after I was 26, I would not have the ability to open and 
build for a financial future without having to forfeit my 
nursing care supports.
    I know that Senator Casey has introduced the ABLE 
Adjustment Act which will begin to increase the age provision 
by law. I would strongly encourage the members of this 
Committee to support this piece of legislation. It would allow 
millions more individuals with special needs a chance to build 
a brighter economic future.
    Additionally, I would like to make two more recommendations 
about making it possible for people with disabilities to 
economically be self-sufficient.
    It is my wish that states will make it easier to transfer 
waiver programs. If you receive a waiver in states, it is not 
easy to transfer it to another state if you are looking to 
relocate or take another job.
    My second recommendation would be for individuals like 
myself that are career-driven to have nursing care that we 
would pay into a program which would be on a sliding scale, so 
as we could take different advancements, we would pay back into 
the system.
    In closing, I want to be self-sufficient and continue to 
climb the corporate ladder. I never wanted to start receiving 
Social Security benefits, but my life changed in 2003. As my 
path of my life is leading, it may be into a career in 
politics, and with the help of ABLE and disability benefits, I 
might be able to achieve that because ABLE has been a lifeline. 
Thank you.
    The Chairman. Thank you very much for your testimony and 
personal story.
    Mr. Stollsteimer.

  STATEMENT OF JACK STOLLSTEIMER, DEPUTY STATE TREASURER FOR 
CONSUMER PROGRAMS, PENNSYLVANIA OFFICE OF THE STATE TREASURER, 
                    HARRISBURG, PENNSYLVANIA

    Mr. Stollsteimer. Thank you, Chairman. Good morning, 
Chairman Collins, Ranking Member Casey, and other distinguished 
members of the Committee. I am Jack Stollsteimer, Deputy State 
Treasurer for Consumer Programs, and on behalf of Pennsylvania 
Treasurer Joseph Torsella, I am grateful for the opportunity to 
appear before you today to discuss our Department's ABLE 
program and how it is improving the lives of people with 
disabilities of all ages by helping them achieve economic self-
sufficiency.
    The PA ABLE program was launched by Treasurer Torsella in 
April 2017 after a bipartisan group of state legislators, 
supported by a broad coalition of advocates for the disability 
community, enacted strong enabling legislation in 2016. The 
Pennsylvania ABLE Act includes provisions exempting ABLE 
accounts from Medicaid paybacks and offering account holders 
protection from creditors in state legal proceedings.
    Since the implementation of the PA ABLE Act, our 
Legislature has continued its strong support of the program by 
creating a state tax deduction for contributions to ABLE 
accounts and through an annual appropriation for Treasury to 
market and administer the program.
    In the 15 months since our program launch, we have seen a 
surge of interest for the benefits offered by the ABLE program 
from people with disabilities of all ages. We have a number of 
account holders who are working adults with disabilities who 
find the freedom for the first time to hold significant funds 
in their own account without jeopardizing their access to 
federal disability benefits truly liberating. We have parents 
of young children with disabilities saving long term for their 
children's future by making small but regular contributions 
without paying the up-front fees required to open a special 
needs trust. We have older adults using ABLE funds to purchase 
adaptive technology to enable them to live more productive, 
fuller lives. And we even have parents of account owners using 
ABLE accounts as estate planning vehicles to ensure their 
children's future financial security. Currently our ABLE 
program has more than 1,400 account holders with $8.3 million 
under management, and each of those account owners has their 
own story as to why ABLE is the best option for them to save, 
to pay bills, and to make debit card purchases through their 
ABLE account. We have made so much progress, but we have so 
much more work to do. There are over 60,000 children with 
disabilities in Pennsylvania; with ongoing support from federal 
and state policymakers, our goal is to reach as many of them as 
we possibly can.
    Over time the ABLE program can provide a means for people 
with disabilities to achieve greater self-sufficiency as they 
age as long as our federal partners continue to support the 
program's promise. The ABLE program works for people by 
allowing anyone with a qualifying disability a secure, tax-
advantaged way to save or invest without impacting their 
government benefits. But it also works because the Internal 
Revenue Service has broadly interpreted the definition of a 
``Qualified Disability Expenses,'' thereby allowing people with 
disabilities the flexibility to use the program throughout 
their lives, since the nature of an individual's expenses 
change to reflect their different stages in life. Simply put, 
the qualified expense needs of a 25-year-old worker in many 
respects are very different from the expenses of a 65-year-old 
retiree.
    Right now ABLE provides the flexibility to accommodate the 
changing needs of people as they age, but we must ensure that 
remains true in the years to come. And to that end, the 
Pennsylvania Treasury would strongly encourage the Senate to 
consider Senator Casey's bill, Senate bill 817, the ABLE 
Adjustment Act. This bill would greatly increase the 
utilization of the program by allowing individuals with 
disabilities that started before age 46 to open ABLE accounts. 
Increasing the number of people with disabilities who can open 
accounts will strengthen the ABLE program from a fiscal 
perspective while allowing older adults who become disabled 
through accidents, chronic illness, or military service to use 
this tool for their economic stability and self-sufficiency.
    Senator, thank you very much for the opportunity.
    The Chairman. Thank you for your testimony.
    Since this hearing was requested by the Ranking Member, I 
am going to defer to him for his questions first.
    Senator Casey. Chairman Collins, thanks very much. And, 
again, thank you for holding this hearing.
    I want to start by reiterating some of the comments I made 
in my opening about the work that Senator Burr did with me and 
our staffs over many years, not only to get ABLE passed but to 
continue to work together on several pieces of legislation to 
improve it. So I want to commend and salute him for his work, 
and I think I at least have to go to one coffee shop in North 
Carolina because he has made a fulsome recommendation today, so 
we are grateful for that opportunity.
    I wanted to start with Deputy Treasurer Stollsteimer about 
the uptake in Pennsylvania, the number of accounts. We know 
that the dollar amount is higher than the average, and we are 
grateful for that. We have some 1,400 account owners in just 15 
months in Pennsylvania. I wanted to ask you, Deputy Treasurer 
Stollsteimer, why you believe that is the case, why we are, at 
least in Pennsylvania, moving at a faster rate maybe than some 
other places.
    Mr. Stollsteimer. Senator, thank you for the question. I do 
not want to jinx ourselves. We are off to a good start, but the 
program has a long way to go, as you know.
    I think our success so far has really--we could chalk it up 
to three factors.
    One is the commitment Treasurer Torsella made to giving 
every resource Treasury has to make this program a success from 
the moment we took office.
    The second factor, I think, is the support, the bipartisan 
support we have gotten from the Pennsylvania Legislature. 
Senator Baker from your area and Representative O'Neill have 
been stalwart supporters of the program, and the resources that 
we need at Treasury they have given us to market the program.
    And the last thing, and probably most importantly, is the 
engagement we have been able to do with the disability 
community. What we have found is that we need validators in the 
community to tell people that this new program is something 
that is a benefit to them and that they should not fear. There 
is still a lot of fear in the disability community over losing 
their benefits by saving money in their own name, and we have 
to overcome that. And you may find this shocking, but people do 
not really want to take financial advice from Jack 
Stollsteimer. They need somebody in their life that they trust 
to tell them, yes, that program is trustworthy and you should 
get involved with it. And I think that is why we are successful 
thus far.
    Senator Casey. I want to reiterate what you said about the 
disability community. We could not have gotten ABLE passed nor 
could we pass improvements. Senator Burr and I were blessed to 
have that strong ally every step of the way.
    I am also grateful to hear about the fact that it remains 
bipartisan at the state level. And, of course, the advertising, 
just like anything else in society, unless people know about 
it, we will not have people opening accounts. So we hope the 
General Assembly in Pennsylvania and in other states will 
continue to provide resources for advertising.
    I wanted to next move to Mr. Mitchell. First of all, I 
commend you for not just being here today and your testimony, 
but also commend you for your achievements. You are 
accomplished by way of the degrees you have, a Bachelor of 
Science in business with a minor in marketing, and you also 
have an MBA, and we are grateful that you have worked so hard 
to do that, to achieve those degrees, but also the work you are 
doing in holding down two jobs and the work you do with others 
that have a disability.
    I guess one of the things I wanted to amplify which you 
referred to in your oral testimony--your written testimony goes 
into more detail--about the limitations that you have, legal 
limitations by way of current policy where it is almost 
impossible for you to earn more than $40,000. Tell us about 
that and some of the barriers you have.
    Mr. Mitchell. Thank you. Some of the limitations that I 
have with not being able to earn more than $40,000 is with 
different waiver programs you have these restrictions in money, 
so you can only make, let us say, $2,500 this month. Social 
Security has another limit. It is always an adjusting scale 
where it is, you know, am I in compliance with Social Security? 
Am I in compliance with the waiver program? And sometimes they 
do not all talk to each other. Many times, you know, at least 
once every three years, I have to prove to Social Security I am 
disabled. I went eight months without a Social Security check 
because they did not feel like I was a disabled because, you 
know, of me being employed and the titles that I held.
    Periodically I do attend National Black MBA conferences, 
and one of the issues that came up was if I accepted a salary 
of, let us say, $65,000 or $70,000, right now under my Medicaid 
waiver, it says just for 27 hours, that is $53,000. So just 
because, you know, let us say I brought in $70,000, subtract 53 
from that, how do I continue to live? So I have almost been 
forced to stay within the guidelines of Social Security and the 
Medicaid waiver just so I do not put a financial burden, you 
know, on my parents because I did not have my trial work 
periods. I started working in high school before my accident 
and returned after my accident, and, you know, I continued to 
work in high school, and I used up my trial work periods. And 
now when I have finished my MBA, if I was to take a new job, I 
do not have those trial work periods to try to build a cushion 
to come back. So right now I am kind of playing how do I get 
ahead without falling behind.
    Senator Casey. I appreciate that. Thanks for pointing that 
out.
    Thank you, Madam Chair.
    The Chairman. Thank you.
    Mr. Stollsteimer, in the State of Maine, the poverty rate 
for working-age people with disabilities is 30.5 percent, and 
that is more than three times the poverty rate for the general 
population in the State of Maine. I know that the ABLE program 
has not been in effect that long, but do you have any 
information that would suggest that ABLE accounts are helping 
to lower that poverty rate among those living with 
disabilities?
    Mr. Stollsteimer. Yes, Senator, I think they are. Again, we 
find people from all age groups who are starting to use ABLE 
accounts for different purposes. It is one of the most flexible 
programs possible. A working person can use it to pay their 
daily expenses, to use a debit card feature, to have a checking 
account for the first time in their own name. So it is helping 
them financially, but it is also empowering them to be able to 
make debit card purchases.
    We just on Monday found a family in Pennsylvania, just to 
give you an example, of working-age twin sisters, and they have 
muscular dystrophy. And they love music, and they want to teach 
music, and they were not able to do that. But they were able to 
save money in an ABLE account to be able to put a down payment 
on a vehicle that another government program is going to adapt 
for them using adaptive technology to get them out and enrich 
the community. They are going to teach children music, and they 
are going to enrich their own life experience by earning a 
living doing that.
    I think this program is so flexible by allowing people both 
to invest long term and also to use it to pay daily expenses 
that it is the best vehicle to help the people you are talking 
about. It is a disgrace that people with disabilities live in 
poverty. But I think ABLE is a vehicle for them to get out of 
that.
    The Chairman. Thank you.
    Doctor, given the work that you have done with families, I 
am interested in your comments on what I call the ``sandwich 
generation,'' and many others call it that as well, and that is 
individuals who are both taking care of a child with a 
disability and an aging parent who also has become disabled.
    How do you see the ABLE Act assisting those individuals in 
the very difficult role that they are playing as a caregiver? 
And what other needs should we be looking at for them?
    Dr. Nye-Lengerman. Thank you for your question. I think the 
panel did a very nice job today talking about one of the key 
ingredients of ABLE is that flexibility. And for that group of 
compound caregivers that are sitting sort of in between a 
younger family member with a disability and an aging parent, 
what you need is more time, resources, and energy to be able to 
meet your own needs and your family member's needs, and what 
ABLE really does is a vehicle for that. So when you can use a 
debit card, when you do not have an overly burdensome paperwork 
process or a reimbursement process, it makes some of those life 
decisions that we may take advantage of being as part of our 
everyday practice, it makes it easier for families to live 
their lives the same ways that everybody else does.
    And I think the other thing is you cannot underestimate the 
power of what peace of mind brings in reducing stress both on 
the physical and mental health side of that when you have, if 
you will, a space to save in a way without penalty, what that 
can bring both for your younger son or daughter with a 
disability or your older parent, that that can relieve some of 
those other burdens that we really have a hard time sort of 
figuring out how to best support families.
    So I think, again, it is that flexibility piece and, again, 
making sure that families know that it is available to them 
from trusted sources, saying, yes, let us keep adding and 
investing to our ABLE accounts.
    The Chairman. Thank you.
    Mr. Mitchell, I was struck when you talked about your 
mother just stumbling onto the fact that ABLE accounts existed 
in your state. What more, aside from this hearing, which I hope 
will raise awareness, should we be doing to try to publicize 
the availability of these accounts?
    Mr. Mitchell. So far, what I think, you know, especially 
working as an independent living specialist, it is just 
publicizing it, getting it into vocational rehabilitation, 
possibly having somebody at the Social Security offices, also 
the independent living centers, just making sure everybody is 
on board to know exactly what ABLE accounts are, you know, what 
are the pros--you know, there are very few cons--because some 
just do not understand. Some people are scared away because you 
have so many misnomers out there, you know, about Medicaid 
recoupment. You know, they will take this. You know, people 
want to be in your business. And I am in a rural area. Jackson 
is the biggest city in between Memphis and Nashville, and some 
people are just scared, you know, by a new piece of legislation 
that they do not understand and very few people have.
    So I try to get as much information as possible. I was 
recently selected to be a national spokesman for the ABLE 
accounts, so I just try to get out there. I try to educate the 
school system. Anybody I can talk to about ABLE, I try to do 
that because I try to show them that this is a benefit, this is 
something new. And, you know, why not do it?
    The Chairman. Thank you.
    Senator Cortez Masto?
    Senator Cortez Masto. Thank you, Madam Chair and Ranking 
Member, for holding this hearing. And thank you to all of you 
for being here and having this conversation.
    Mr. Mitchell, let me start with you. Let me just ask you 
this: I am from the State of Nevada, and there are almost 
400,000 people with disabilities living in Nevada, and over 
half of them have some type of physical disability. In your 
position as an independent living specialist--and you work to 
keep people with disabilities in their own homes--what type of 
expenses would a person with a disability need to save to be 
able to continue living in their home or their apartment or 
with a parent or sibling? I think that is enlightening for 
people to know because I am struck by the fact that it is not 
just about getting the job and an income. I think people need 
to understand the additional expenses that are incurred and why 
you still need the support from Social Security or Medicaid or 
Medicare. So if you could talk a little bit about that, that 
would be helpful. Thank you.
    Mr. Mitchell. Yes, ma'am. There are many expenses that go 
into keeping someone independent and living in their home. For 
me, transportation, a wheelchair modified van is almost in 
excess of $100,000 with electronic hand controls modifying it. 
Accessible bathrooms--an accessible bathroom, at least in rural 
West Tennessee, is almost $12,000 for us to do just a generic 
one.
    Wheelchair ramps, people think they last forever. But 
depending on the climate that you live in, dry rot, animals, 
things can deteriorate that, and, you know, a 40-foot ramp in 
West Tennessee is almost $4,000.
    Medical supplies--myself, you know, I get assistance from 
my mother and father, but I have catheter bags so I can use 
that on the go, different other leg bag extensions to make sure 
that I am able to stay proactive, going out with my peers. But 
these are things that are not covered by insurance. So you can 
ask--you know, supplies can run, for a 3-month supply it can be 
$2,000 out of pocket. So if you can only earn $2,000 a month, 
you know, under Social Security, where do you pull from? These 
are things that people get, you know, every year. It is hard 
for individuals with disabilities to stay in their home and 
especially those that are cold in nature, because they will run 
their heat higher at night.
    So if they do not have, you know, transportation, a 
wheelchair ramp, the accessible bathrooms, and even more so if 
they need nursing care, it is hard for them to stay in the 
home. So that is why, you know, people stay under Social 
Security so then they are able to get those Medicaid waivers.
    Senator Cortez Masto. Thank you. I appreciate that.
    Let me just say I have a cousin, a first cousin who I grew 
up with who is wheelchair-bound, has a disability, and my aunt 
takes care of him. And I will tell you, it was not until they 
were able to afford a van that accommodates my cousin being 
able to actually use his wheelchair to ride up into the van, it 
made them more mobile. Other than that, they could not get 
around. I think people need to understand the additional costs 
that come and the burden on persons with disabilities or people 
with disabilities, that that is why these savings accounts are 
key, and that is why I support the ABLE adjustment account. I 
think we need to be doing more.
    Mr. Wright, thank you. I think you are absolutely right, 
there is some sort of stigma. I do not understand why, but 
thank you for what you are doing, you and your wife. And I 
think we should be doing more of this, and this brings me to 
the next question I have. I am running out of time. But, Dr. 
Nye-Lengerman, you have looked carefully at the issue of 
employment and people with disabilities. In the State of 
Nevada, we actually have a relatively high work force 
participation rate for people with disabilities. It is, as of 
2016, about 42 percent, and that is according to the University 
of New Hampshire.
    You know, have you looked at this across the country and 
the rate of participation for the work force? And do you have 
any reason why Nevada's work force participation might be 
higher than others or other things that we can be doing in our 
states?
    Dr. Nye-Lengerman. Yes, thank you for your question. One of 
the things that we find when we look at different types of 
uptakes, policies and services, sort of the data that comes 
from states, one of the strongest predictors of anything, 
whether it comes to work force participation, to where people 
are living, to how they are using their Medicaid dollars, is 
the state in which they reside. And so state context is an 
incredibly important factor in how services and systems play 
out for people with disabilities. And so there really are these 
economic features that occur within each State. There are sort 
of the cultural features within state agencies, maybe your 
state vocational rehabilitation program or your state 
intellectual and developmental disability organizations, like a 
Department of Human Services, and how they prioritize and 
invest in certain things. And we definitely see that there is a 
wide variation in how states choose to invest in funding and 
supporting employment for people with disabilities. And there 
really are really significant gaps.
    And so my best guess for Nevada specifically without 
digging in a little bit of those numbers is that some of your 
state agencies, maybe some of your business partnerships, have 
really invested and zeroed in on these issues as a priority for 
that particular State. And what we often see as well, too, is 
that these sort of--again, I said cultural context of a state 
about what sort of brings that energy and attention to the 
issue as well can have a really big deal, and that has a lot to 
do with advocacy leaders, parent leaders in the State, as well 
as state leadership within state agencies and at the federal 
level as well.
    So I think it is a really exciting and important finding to 
highlight, and I would be very interested in digging into that 
a little bit more. But thank you for sharing.
    Senator Cortez Masto. Thank you. I notice my time is up. 
Thank you all again.
    The Chairman. Thank you.
    Senator Tillis?
    Senator Tillis. Thank you, Chair Collins and Ranking Member 
Casey, for requesting the hearing.
    Mr. Wright, I want to get to a question for Mr. Mitchell 
about some of the economic challenges, but I would like to talk 
about maybe some of the challenges that you all have faced as 
an employer and what more we can do to encourage other 
businesses to provide more workplace opportunities.
    Mr. Wright. Senator Tillis, thank you for the question. We 
have faced a number of challenges, and I think it revolves 
around just the misunderstanding of what it means for people 
with disabilities to work. A couple of ideas around that, you 
know, making ABLE accounts a little bit more accessible, too. I 
know everyone is doing their darnedest to make that happen, and 
marketing obviously, as in all things, helps.
    But I wonder if maybe during early intervention services if 
ABLE accounts might be brought up to the families, at the least 
an information sheet, a one-pager, maybe automatic enrollment. 
I know there is some difficulty because every state--you know, 
lots of states have them, so how do you choose which one? But 
at least an information sheet.
    Also, at IEP meetings, it might be brought up then, ABLE 
accounts, a single-pager right there.
    And then, last, if you are lucky enough to find someone who 
will hire you, maybe you have an information sheet or auto 
enrollment again when you are filling out your W-2, where 
automatic enrollment, automatic direct deposit, away you go. 
There might be some really practical ways to increase the 
accessibility of the 529(a) accounts.
    But, you know, specifically I really do think it is the 
business community that has got to step up largely, you know, 
and say there is this massive group of folks with disabilities 
who can work, who want to work. I think research shows that 
people with disabilities largely want jobs. So maybe 
incentivizing business owners to look at hiring people with I/
DD. Are there some sensible tax credits that we could offer, 
some payroll tax holidays for some amount of time, something. 
Even SBA loans, might we work with the SBA to say, hey, look, 
if you as a business are committed to hiring some percentage of 
people with disabilities over the term of your loan, we will 
discount your interest rate by 25, 50, 100, 200 basis points, 
whatever it is, and monitor that using different agencies, or 
however you can put it all together.
    But I really think incentivizing businesses is the key to 
this, because imagine if every small business in this country 
hired one person with a disability for competitive, inclusive 
employment, we would not have this unemployment problem.
    Thank you, Senator.
    Senator Tillis. Thank you.
    Mr. Mitchell, so much of what you said makes no sense in 
terms of providing a disincentive for you to continue to grow 
and build on your career. Have you given much thought to how we 
could figure out a way to kind of strike a balance? Because you 
look to me like somebody that could be making a seven-figure 
income if you wanted to go down that path versus a political 
career. By the way, I have got a brother who is in the 
Tennessee State Legislature, so if you all need some work over 
there, we should connect you two together. But, you know, some 
sort of a mechanism--clearly at some point you could be a 
person of means who you could expect to defray some of the 
expenses so that we have the resources for those who can. Have 
you looked at that or have any opinion on that?
    Mr. Mitchell. Yes, sir. I would say something such as a 
sliding scale as to, let us say, when you hit plateaus, if you 
start earning $45,000, you pay this much into your waiver 
program for nursing; you get a boost and you get to $65,000, so 
I would think more of a sliding scale. So as that person 
climbs, you know, he climbs that corporate ladder, they are 
able to contribute back into the system, but eventually they 
will get to that income level to where they are able to buy a 
house, they have enough savings to say, hey, I have figured out 
a way to manage my nursing care, so I can come off this waiver 
program because now I have succeeded in climbing in whatever 
industry they try to get into and they are able to give back 
and let somebody else try to climb as well.
    Senator Tillis. And it seems to me there needs to be an 
incentive as you move up this scale, the incentive to continue 
to work, grow your income so that at some point perhaps you 
become financially independent. I think that is something we 
have to look more at.
    Dr. Nye-Lengerman, I know states vary. You mentioned that 
in a prior comment. Are there states that we should be looking 
at as particularly best practices or better practices, some 
that stand out as where we would like most of the other states 
to be as a norm?
    Dr. Nye-Lengerman. Well, I have some interesting states 
that are maybe unique. One of those states is the State of 
Washington that produces some of the best employment rates for 
people with disabilities. Now, that was really a part of a 
really meaningful and purposeful shift on the part of their 
state intellectual and developmental disabilities agency to say 
we are no longer going to be using public funds through 
Medicaid to directly pay for segregated or sheltered work. And 
so it is sort of saying we are going to close the doors and try 
to create those spaces in our communities where people with 
disabilities can work, and that was a really important step. 
But in policy, as we know, we always have these unintended 
consequences.
    So one of the things that we see, for example, in the State 
of Washington is that you do see higher rates of people with 
disabilities working in competitive integrated employment. But 
you also see--and I have heard it referred to as sort of 
reverse segregation in the sense of whereas people might have 
been going to programs and services during the course of a day, 
they are now in their own homes alone not working. So while 
they may be working 5, 10, 20 hours in the community, 
previously they were 30 hours in a day program or employment 
program with people, and now they may be at home more often 
than not.
    So I think it is sort of the right mix of incentives for 
people to work, but also to have spaces to be a part of their 
community. So if they are not working, how do we make sure that 
people with disabilities are seen as valued and contributing 
members of society--which they are--to say work is important 
but also having support is important? So Washington is an 
interesting state.
    Then there are some other states, the State of Ohio, for 
example, has really invested and really wrapped around this 
idea of employment first, of competitive integrated employment 
as being the priority for people with disabilities and the 
expectation. And so they really have allowed a number of their 
state agencies to sort of work to that end about how do we get 
VR and our Departments of Health and Education and Human 
Services to work together to that goal.
    So those are two that kind of stand out that you sort of 
see get a lot of attention at the moment.
    Senator Tillis. Well, thank you.
    Madam Chair, I have to go to a Judiciary Committee hearing 
after this, but, Mr. Wright, we would love to see you and your 
family in our office today. We are in the same building, down 
on the first floor, so we would love to see you if you have 
time later on. And thank you all for being here for this very 
important topic.
    The Chairman. Thank you, Senator.
    Senator Warren?
    Senator Warren. Thank you, Madam Chair. And once again, 
thank you for holding this hearing.
    There are a lot of things we need to do to improve the 
economic security of older Americans with disabilities, and my 
colleagues have touched on a lot of them already: removing 
barriers to employment, making it easier to save, safeguarding 
health care coverage.
    I want to talk about another very important program, one 
that helps seniors and people with disabilities, who have very 
low income and almost no assets. The Supplemental Security 
Income program, or SSI, it is a part of Social Security. In 
order to be eligible for benefits, a recipient has to have a 
severe disability or be over the age of 65, cannot have more 
than $2,000 in total assets. That is counting your bank 
account, your life insurance, stocks, money under the mattress, 
everything. And for these seniors and people with disabilities 
who have very low amounts of assets and very little income, SSI 
provides an average benefit of about $550 a month.
    Now, Mr. Mitchell, I understand you work with people who 
receive SSI and that you receive it yourself. I know there are 
a lot of ways that we can improve this program, and I want to 
talk about those. But before we do, I would just like you, if 
you would, to say a word about the kinds of things you use 
those SSI payments for.
    Mr. Mitchell. Yes, ma'am. I use my SSI payments to defer 
costs such as wheelchair repairs, because there are, you know, 
so many miscellaneous things that come up, from a flat tire to 
a malfunctioning joystick. Also, you know, there will be other 
supplies such as, you know, I use suppositories, different 
things like that, because these are all things that fall in 
gray areas, and there are so many gray things--I mean things 
that fall in gray areas that you need to be able to contribute 
to and have the money to do so.
    Just recently, you know, I had a consumer, he broke his 
wheelchair charger. It was 9 o'clock at night. We had to make 
sure that we found a way through JSCIL in order to make sure 
that he got a wheelchair charger.
    So I use my SSI benefits for that, and I know other 
individuals and consumers I work with use theirs to cover those 
necessities, because there are just some things, you know, that 
you cannot get.
    Senator Warren. Good. I really appreciate your just 
explaining that to people, and I also want to say thank you for 
your incredible work that you do for people with disabilities 
in Tennessee. It really is remarkable work.
    What worries me is that rather than strengthening this 
important program, the White House has proposed billions of 
dollars in cuts to SSI, breaking President Trump's promise not 
to cut Social Security. Instead of cutting this crucial 
lifeline for low-income seniors and people with disabilities, 
we should be doing everything we can to improve this program.
    The ABLE Act is an important step toward allowing SSI 
recipients to buildup their savings, and I am very grateful for 
the leadership from Senator Burr and Ranking Member Casey and 
other members of this Committee that worked on this issue. But 
there are also other ways that we could also improve SSI 
itself.
    So, Dr. Nye-Lengerman, you are an expert on poverty and 
disability as well as on employment for people with 
disabilities. Could you tell us about how SSI's limits on 
recipients' income and assets affect their ability to buildup 
any financial security?
    Dr. Nye-Lengerman. Thank you for the question, Senator 
Warren. I would be happy to explain that.
    In a nutshell, SSI, the Supplemental Security Income 
program, looks at a number of things. They first look at SGA, 
which is called ``substantial gainful activity,'' and what that 
does is it basically says this is the amount of money that is 
OK to have in earned income over the course of a month. For a 
non-blind individual--they use the binary blind or non-blind--
that SGA is $1,180. For an individual who is blind, that limit 
is $1,970. So anytime you go over that SGA in that month, it 
reduces your monthly benefit.
    And so what we see is this sort of disincentive, if you 
will, to work in the sense that you may be able to have a part-
time job and earn $2,000 a month. But if you do, your Social 
Security is going to go down.
    Now, there are some other incentives, and we talked about 
trial work periods, really that are helpful, but that is one of 
sort of the sticking points that makes it hard because people 
are afraid when you count on something like SSI like that. But 
the other component is the asset limit that you referenced as 
well. For an individual that asset limit is $2,000, and for a 
couple that is $3,000. And so, again, it really is difficult--
really impossible to move out of or beyond poverty because of 
those limits.
    Senator Warren. So people have both a disincentive to work, 
have to live right on the edge of poverty. Can you tell me when 
those numbers were last updated?
    Dr. Nye-Lengerman. They were last updated in 1989, and they 
have only been updated I think three times since the program 
rolled out in the 1970's.
    Senator Warren. Right. In fact, I understand some of the 
numbers have never been updated since 1972.
    Dr. Nye-Lengerman. That is correct.
    Senator Warren. So that is where we are holding people. You 
know, these outdated asset and income limits are barriers that 
prevent SSI recipients from building a better future for 
themselves and for their families.
    I am glad to be a cosponsor of Senator Brown's SSI 
Restoration Act which would allow recipients to save up for 
emergencies, to earn a little more money for work and other 
sources without being penalized, and to receive support like 
food or shelter from friends and family members. These changes 
will help ensure that the SSI program fulfills its promise and 
better serves those who need it most.
    Growing old or having a disability should not mean 
struggling to put food on the table or worrying about keeping a 
roof over your head. We should be a better country than that, 
and we should make sure these programs live up to our values.
    Thank you, Madam Chair.
    The Chairman. Senator Burr, you have been extremely patient 
in listening through a lot of testimony and questions. I again 
want to applaud you for your leadership and working with 
Senator Casey in authoring a law, the ABLE Act, which is really 
making a difference for so many families across this country.
    Senator Burr. Well, Madam Chairman, let me thank you for 
two things this morning. One is this is the longest period 
uninterrupted I have had in 6 months.
    [Laughter.]
    Senator Burr. Actually being in here, and I think the fact 
that you were doing this, the intelligence staff knew to stay 
away. They only came one time.
    But it has also given us an opportunity to highlight the 
success of ABLE, and let me just requote some numbers. In the 
first three months of this year, 2018, the number of accounts 
has grown 19 percent; the amount of invested assets, 37 
percent; and the average account size grew 15 percent. In the 
past year, the number of accounts grew 177 percent; the 
invested assets, 290 percent. All that in the last year. And I 
think Senator Warren hits on a very important thing. Isn't it 
time for us to update everything?
    I remember when Bob and I started this--what, 10 years ago? 
And, you know, it sort of gets bent at the question that 
stumped you. Why doesn't everybody that is disabled have an 
ABLE account? You know, that is mystifying. We created it, we 
built it, it is there. And the fact is that things do not 
happen overnight. It requires maybe incentivizing employers, 
educating the disabled, convincing states--thank you for what 
Pennsylvania has done--convincing states to set the accounts 
up.
    When Bob and I started in this, it was with the greatest 
detail to flexibility. It was with an appetite that was every 
bit as big as everybody has expressed up here, but with the 
reality that we could only do certain things and get it 
accomplished, and we had to pick and choose what was the most 
important. And I think to some degree with the cooperation of 
the disabled community, we have been masterful--and the support 
of our colleagues--that we have not tried to bite too big a 
bite of the apple, and had we, America was not ready for it. 
American business was not ready to employ them. States were not 
ready to set up accounts.
    You know, I am not sure that the average person who is 
disabled, Mr. Mitchell, and would like to have an ABLE account 
understands that if they live in Tennessee, they can set their 
ABLE account up in North Carolina. Since 2016, that ability has 
existed. So if there is a state out there that does not have 
one or you do not like the people, come to North Carolina. Set 
your account up. We have made it as easy to participate as we 
possibly can. Now we are getting to the tough part. How do you 
expand it? And how do you expand it at rates that exceed--
probably if we had said could you grow it 190 percent in a 
year's time, we would have said no way. But we started with a 
very low bar.
    And, Ben, I have got this question for you. What do you 
think are some of the reasons that individuals who qualify for 
ABLE accounts do not set them up?
    Mr. Wright. Senator Burr, thanks for your comments and the 
question. I think quite simply they are just not aware of them. 
I think it is as simple as that. I know that there are a lot of 
folks out there trying to get the word out, but, you know, 
marketing is expensive. It takes some bucks to get the word 
out, whether it is social media, whether it is printed 
materials, word of mouth. I know in our own State of North 
Carolina, folks go out to different groups and give speeches. 
Well, that is great for the people who are in attendance, but 
those who are not do not hear it, right?
    So that is the main reason, and that is why I go back to 
that notion of perhaps when people fill out a W-2, they are 
filling out an ABLE account form at the same time, and then 
back it up all the way to early intervention services, because 
families will start talking about it.
    Then I think it also goes back to Mr. Mitchell's--I think 
it was your comment about they are afraid they are going to 
lose those supports, you know? People say, ``No, you are not,'' 
but they are so afraid of it that they do not---it is almost 
like they do not even want to read it. So we have got to get 
people over that and really make it more ubiquitous. And maybe 
it is, again, that piece of paper in front of them when they 
are signing that W-2 or what have you.
    Senator Burr. Is there more the disability community can 
do--and I am not talking about the disabled; I am talking about 
the advocacy groups that are out there. Are they selling to 
people that they have their e-mail addresses, they have their 
mailing addresses, they have monthly contact with these 
individuals, are they selling ABLE like they should?
    Mr. Wright. That is a great question. I do not know the 
answer to that, so I might defer to somebody who has those 
statistics or knowledge.
    Mr. Stollsteimer. Senator, I can tell you from 
Pennsylvania's perspective, you are exactly right. Ignorance of 
the program is the first hurdle, and then fear is the second 
part. People are terrified they are going to lose their federal 
benefits if they sign up for this program. And it is not enough 
for Treasury to tell them that this is a safe product. We have 
a customer service staff who go out and make presentations. But 
we need disability organizations, advocacy groups to start 
answering some of those questions for us.
    Just the other day I got a call from the Arc in my own home 
county who had misinformation about what qualifies or is not a 
qualified expense. And so they are going to call a meeting of 
their members to have our staff come and explain to them in 
detail. And it is a one-on-one kind of a thing. We really do 
need to engage with individual families about this.
    And then there is the whole financial literacy piece, 
right? You have to be able to understand whether you want to be 
an aggressive investor or a moderate investor or whether you 
want to do the debit card feature and the checking feature.
    So it is relatively easy. You could sign up online. But 
there is all this fear that we still have to get over.
    Going back to the ignorance for a minute, we have been in 
the college savings business, thanks to Congress under the 529 
section of the IRS Code, for 25 years in Pennsylvania. 
Nationally only a third of people know about the 529 programs. 
So we have been at this for 25 to 30 years, and we still have 
to be able to break through to the families and let them know 
that this great vehicle exists for them.
    It is going to take a long time for ABLE, but it has to be 
done, sir, it has to be engagement with the advocacy groups, or 
it is not going to succeed.
    Senator Burr. Mr. Mitchell?
    Mr. Mitchell. Yes, sir, Senator Burr. I work for the Center 
for Independent Living in Jackson, Tennessee, and we try to 
push out ABLE to our consumers that come through the doors. But 
I think it needs to be a three-pronged attack.
    I think, one, we need to get the school system involved. As 
parents get their kids in school, those counselors that know 
that somebody is on an IEP or they have a disability, give them 
the literature there.
    But also the rehab facilities such as the Shepherd Center 
or the Shriners Center, Le Bonheur, getting their social 
workers on board, because if you can get the parents early or 
if there should be an accident, they realize that this vehicle 
is out there.
    And, third, I would say also getting with NCIL, which will 
be here in Washington next week, getting with that advocacy 
group, and the independent living centers throughout the states 
to really help push ABLE and show them that--you know, show 
them success stories. That is one of the reasons why I was 
chosen as an ABLE national spokesman to really get the word 
out. But the more people we get signed up sharing their success 
stories--you can be like, ``Oh, I know Paul. Paul down the 
street has an ABLE account. I can go there.'' Or at school, you 
may have a counselor that will say, ``Hey, remember Mr. 
Mitchell graduated 5 years back? He is still in town. Let us 
contact him. He has been successful with ABLE.''
    So I think it is just a multi-tier attack that we need to 
get it, not only from the disability side but also from the 
school system side.
    Senator Burr. Mr. Mitchell, thank you.
    Chairman, you have been generous with time. Let me just say 
I think we have learned a lot today. We have learned that the 
majority of those with disabilities really want to work, but 
for decades, for some of them, they have been penalized to do 
it. And now we are beginning to change that stigma, and we need 
to look at things that create a comfort on their part to work 
and to contribute to ABLE. It is amazing to me that a high 
school counselor--every student graduating knows about the 
student loan program, but every disabled student in that school 
probably is not told about an ABLE account. I think there are 
simple things. This is not different for us to do.
    I am not going to speak for Senator Casey, but I think he 
would probably agree with this statement. When I leave this 
institution and I am asked, ``What was the most important 
legislation you did in your congressional career?'' I do not 
think there is any question. In my case it would be the ABLE 
Act. It is not the biggest, it is not the sexiest, it does not 
affect the most people. But it affects the folks that have the 
least amount of voice, and it is the community that really can 
be benefited for life in what we do.
    I thank the Chair.
    The Chairman. Again, thank you for your leadership.
    Senator Gillibrand, so glad you could join us.
    Senator Gillibrand. Thank you, Madam Chairwoman and Mr. 
Ranking Member. I am really grateful we are having a hearing on 
how we can talk about economic stability and self-sufficiency 
for Americans with disabilities, and I am very grateful for the 
leadership Senators on this Committee have shown in not only 
putting the ABLE Act in place but having a hearing to talk 
about its successes.
    I want to talk about the area that it does not cover and 
offer three ideas for you guys to think about as experts on 
this issue.
    We know that the ABLE Act does not cover you if your 
disability accrues after the age of 26. We also know that the 
parents of people who are disabled are not eligible to have 
these savings accounts included as well. And we know that 
because, as Senator Burr said, we have to make certain 
decisions about what to cover and what to do quickly. So I have 
three ideas I would like your thoughts on, and particularly 
Kelly Nye-Lengerman, since you are an expert on poverty and 
disability.
    So the first idea is really simple: having a national paid 
leave plan. We are the only industrialized country in the world 
that does not have national paid leave, and most people do not 
have access to it. Only about 15 percent of all workers have 
access to paid leave. And you know as caregivers, if you do not 
have time out to take care of the people in your family when 
they need it most, it really disadvantages you or your ability 
to earn long term, to be able to go in and out of the work 
force quickly, not lose your spot at the job you have. 
Typically for caregivers they have to start over on the bottom 
rung if there is a family emergency. And we also know that a 
lot of our caregivers are aging; 860,000 caregivers are over 
the age of 60 nationwide and are providing care for some of the 
disability. So it is really important that we think about paid 
leave as a way to meet some of the needs that are not being 
met.
    I do not know if you have any expertise on this, but you 
did mention it in your opening comments. Would you like to say 
anything about it?
    Dr. Nye-Lengerman. I would, and I think one of the positive 
things about having a strong paid leave program nationally is 
that it meets and can serve both caregivers and people with 
disabilities. And so on the caregiving side, if a family member 
needs to step away to provide some type of support or care for 
a family member, they can, like you said, not losing their 
employment or spot in line, if you will. But it also is 
beneficial to people with disabilities because there are issues 
related to health and disability that come up. They come up for 
all of us. They may come up differently for people with 
disabilities. And so having a paid leave plan really provides 
that opportunity and safety net so people can stay in the work 
force, because also what we are talking about today is it is 
not just about savings, it is also about earnings. And so paid 
leave for both people with and without disabilities and 
caregivers is very important.
    I would also say to your comment about making sure of 
ABLE's accessibility to other groups or other populations, a 
number of panelists--and I think we have talked today about 
increasing that age when an individual acquires their 
disability is another pathway that seems to make a lot of 
sense.
    Senator Gillibrand. The second idea, and this is something 
Senator Burr talked about, he said people want to work, and I 
thought that quote was really important. And I think people 
with disabilities desperately want to work. But so few who are 
disabled have access to employment and access to basic 
training. In fact, the statistics say that the rate for persons 
with a disability of unemployment is 9.2 percent for 2017. That 
is double the national rate. So declaring victory at four-
percent is not so great if you happen to be disabled because 
you are at 9 percent.
    So my question is: What is your thinking about moving us 
toward this notion that anybody who wants to be working full-
time should be able to have access to the training they need to 
get that opportunity and really put the investment behind this 
goal of full employment, this goal of actually getting us to a 
place where training is guaranteed? Is that something that--and 
all of you could talk about this issue--you would be willing to 
think about and maybe testify about? Edward, if you want to go 
first?
    Mr. Mitchell. Actually, that falls in line with vocational 
rehabilitation. Vocational rehabilitation, I can only speak 
from Tennessee's part, they try to live that philosophy. But 
they need to embrace it a little bit more because people you 
want to say work, and there is nothing wrong with any job, but 
people want gainful employment.
    Senator Gillibrand. Right.
    Mr. Mitchell. You do not want to be held back folding 
towels. When I went through my brief--I was a former dean of 
students, an academic monitor at a college. I went through a 
brief spell of unemployment and got back involved with 
vocational rehabilitation. And some of the jobs that they were 
suggesting were not demeaning by any means, but you have to 
have the job--you know, what their counselors are looking for, 
you need to make sure that the job fits the individual, and not 
taking away anything, just some jobs that they were proposing 
just was like more of a step back.
    Senator Gillibrand. Right. You want to earn at your fullest 
potential.
    Mr. Mitchell. Yes, ma'am. And also vocational 
rehabilitation really needs to put, you know, I hate to say, 
their money where their mouth is. They want you to be 
employed--with me right now I am battling not having a vehicle. 
I got one vehicle modification back in 2008, but that vehicle 
has not lasted 10 years. I put over $30,000 in repairs, and now 
it is a battle to get them to approve a second modification. 
And without a vehicle, how do I stay gainfully employed at both 
my jobs?
    Senator Gillibrand. Right. The last issue, if Madam 
Chairman does not mind me raising it, is this issue of access 
to banking, because a lot of our disabled families and 
individuals do not have access to banking. In fact, if you are 
a head of household, your likelihood of being unbanked or 
underbanked is--18.4 percent are unbanked and 28 percent are 
underbanked. That is a huge number of people who do not have 
access to banking.
    So one idea to address that is this idea of postal banking 
because we have so many post offices in every part of the 
country, we have 30,000 locations. For a rural state like 
Maine, it could be game-changing. For places around the country 
where they do not have access to banks because they just do not 
earn enough money. People who are disabled tend to be low-
income earners and do not have enough money to meet any 
thresholds.
    So I would love your thoughts, and you could do it in 
writing if you want, but, Kelly, if you want to give your off-
the-cuff thoughts about whether access to banking would be 
important to the disability community.
    Dr. Nye-Lengerman. Again, thank you for the question. I do 
feel a little stumped, so I will come back in a couple weeks 
with some thoughts on that. But it is very interesting because 
if you think about what supports people to access all kinds of 
different benefits, accessibility is one of those huge 
components. And, again, the post office is a very interesting 
way to think about it because you are, like, yes, there are a 
lot----
    Senator Gillibrand. Well, they used to be able to provide 
banking and did it for a very long time, decades and decades. 
So it is for specific groups of people who have a certain 
earning level, but just having access so you do not have to 
rely on the payday lenders and other types of services that 
tend to be very predatory on poor people. I think it would be 
overwhelmingly helpful for the disability community.
    So for all these issues, to the extent you want to think 
about it, I would be grateful if you would submit letters to 
the Committee on your thoughts of these three ideas as ways to 
meet the needs that are not covered by the ABLE Act. Thank you.
    Thank you, Madam Chairwoman.
    The Chairman. Thank you very much.
    I want to thank all of our witnesses today not only for 
appearing here and your testimony, but for the very important 
work that you are doing in your communities and states. It 
really makes a huge difference.
    As Chairman of this Committee, one of my top priorities has 
been to improve the financial security of all older Americans, 
including those with disabilities. Today's hearing builds on 
previous work of our Committee. We have focused specifically 
today on the unique challenges of attaining and maintaining 
financial security for individuals aging with disabilities and 
for their family caregivers who are also growing older.
    While those with disabilities have the same rights as 
everyone else, the data show that as a group they consistently 
face disproportionate challenges in employment, housing, and 
transportation, which makes it difficult for them to achieve 
financial security. That is why I am so excited about the ABLE 
Act. We are beginning to make progress. ABLE accounts have 
already proven promising in nearly 40 states, and I cannot wait 
for Maine to launch its own program, which will happen very 
soon. I think we will be the 40th State. And I know we can 
count on Pennsylvania to give us any tips that are needed.
    Senator Burr is right that Mainers can go to other states 
to set up the accounts, but it is a lot easier for people to do 
it in their own State. So I am looking forward to the day when 
we have all 50 states providing that service.
    In addition to the ABLE Act, the RAISE Family Caregivers 
Act, which was recently signed into law, will establish a 
National Family Caregiving Strategy to guide our efforts moving 
forward and I think can make real contributions in this area in 
enabling individuals with disabilities and their families to 
save and invest in their own future, improving their retirement 
security, also giving caregivers some respite, which so many of 
them could use.
    I want to turn to Senator Casey for his final words.
    Senator Casey. Chairman Collins, thank you again for 
holding this hearing. I want to thank you for the work that 
went into planning this hearing and obviously our witnesses for 
their testimony.
    Senator Burr, it is always great to be working with you on 
these issues, and thank you for taking so much time. We are 
glad you got a little bit of a break from the Intel Committee 
and that important work that you do there.
    I think we have heard some great stories today about 
individuals with disabilities and their families and their 
efforts to plan for the future and how we can encourage others 
to improve their financial health. We know we have specific 
recommendations, including passing the ABLE Age Adjustment Act, 
and we will be working to do that. And Senator Burr and I have 
been working on a number of bills to improve and strengthen 
ABLE.
    I would also, Madam Chair, ask unanimous consent to submit 
some testimony for the record from Pennsylvanians about the 
ABLE Act, if we could do that for the record.
    The Chairman. Without objection.
    Senator Casey. Thank you very much, and I will quote from 
one of them. Elizabeth Bechtel from Boalsburg, Pennsylvania, 
right in the middle of our state, she said, ``The ABLE program 
is proving its worth every day, allowing people with 
disabilities to build for a future that offers stability of 
services, a safety net for protection against catastrophic 
expenses, and the possibility of saving for a dream they might 
otherwise never be able to afford.''
    I think her words summarize how important this legislation 
is, and we are grateful that we have the opportunity to talk 
about it today.
    Again, I want to thank our Chair, and I want to thank the 
advocates who are in the room. I see Sara Weir, a great 
advocate who helped us in those days leading up to the passage 
of ABLE back in 2014, and I am grateful for all the work of the 
disability community and those advocates who are with us today 
and who I know will be with us on the road into the future.
    Thank you, Madam Chair.
    Senator Burr. Madam Chairman?
    The Chairman. Senator Burr.
    Senator Burr. Could I also mention that last night the 
Virginia529 announced a partnership with the Capital Group, 
which is going to get at the heart of some of the--this is the 
first time we are seeing people put their money into marketing, 
and not to say Pennsylvania has not, but this is huge, and 
hopefully this will be an impetus that will get others out 
there competing for the available accounts.
    The Chairman. Thank you for that addition. And as always, I 
want to recognize Senator Cortez Masto for her streak in 
participating in every hearing and always offering such 
insightful comments and questions. So thank you for being here. 
And I want to thank our staff for their hard work.
    Committee members will have until Friday, July 27th, to 
submit any additional questions for the record. Again, my 
thanks to our witnesses. This concludes the hearing.
    [Whereupon, at 11:08 a.m., the Committee was adjourned.]

   
      
      
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                                APPENDIX

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                    Prepared Witness Statements and 
                        Questions for the Record

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   Prepared Statement of Benjamin Wright, Father and Business Owner, 
                             Wilmington, NC
    Chairman Collins, Ranking Member Casey, distinguished members of 
this committee, thank you for inviting me to testify this morning. It 
has been exciting over the past few years to witness the passing of the 
ABLE Act, the ABLE to Work Act and the ABLE Financial Planning Act, 
spearheaded by Senators Burr and Casey. While there is still much work 
to be done, such as signing the TIME Act into law, I want to thank 
everyone on this committee for all that you have done and continue to 
do for people and families living with intellectual and developmental 
disabilities (I/DD).
    As the father of four children, I spend a lot of time thinking 
about their futures, especially what life might look like after high 
school for our two youngest children, Beau and Bitty, who have Down 
syndrome. As most of you know, it is estimated that over 70 percent of 
adults with I/DD are unemployed. That is a staggeringly high 
unemployment rate that should not be tolerated in this country. Imagine 
any other group where seven of ten people didn't have jobs, people 
would take to the streets, and yet in regards to this group of 
unemployed people, there is no outrage from the majority of the 
American citizenry, only bewilderment on the faces of those who endure 
this discrimination and hopelessness in the eyes of those who love and 
advocate for them.
    It begs the question: Why the complacency? I believe what we are 
really dealing with is not a classic unemployment problem driven by the 
economy, but a bona fide social and cultural problem. Doesn't it seem 
that people with I/DD are not ascribed the same value in our society as 
those of us without disabilities? What other group of law-abiding 
citizens can be paid a sub-minimum wage just because of who they are?
    And yet, paradoxically, before dinner tonight, every one of us in 
this room could acquire the equivalent of an intellectual or 
developmental disability due to an unforeseen event--and then what? 
Having a disability is nothing to be ashamed of; it's part of the human 
condition, so much so that the U.S. Census reports that one-in-five 
Americans has a disability. Yet, here we are--with an eye-popping 70 
percent unemployment rate.
    So, what can we do? I believe if we can find ways to help people 
without I/DD see the intrinsic value in people with I/DD accepting and 
including them should come more naturally.
    My wife Amy and I have given this a lot of thought. So much so that 
two years ago, we decided to open a coffee shop called, Bitty & Beau's 
Coffee, where we employ almost 80 adults with I/DD across three coffee 
shops and everyone earns above minimum wage. Initially, we thought this 
was a great way to reduce the unemployment rate. However, we quickly 
realized that the real power of the coffee shop was its ability to show 
people without I/DD what is possible. The point of Bitty & Beau's 
Coffee is not that people with I/DD can work in coffee shops, but that 
people with and without I/DD could and should be working together--
shoulder to shoulder--in almost every type of business.
    People need a fresh perspective on this issue. They need to know 
and understand that people with I/DD are not broken. What is broken is 
the lens through which we view people with I/DD. Bitty & Beau's Coffee 
is a new lens--and it is changing the way people see other people--
offering a new perspective that once seen--cannot be unseen.
    If the goal of this hearing is to support economic stability and 
self-sufficiency as Americans with disabilities and their families age, 
efforts such as ABLE and addressing policies that inhibit work for 
people with disabilities are important. However, we must also resolve 
to help people without disabilities see people with disabilities, like 
my children, Bitty & Beau, as worthy of that charge.
    Thank you for your time.
                        Questions for the Record
                           To Benjamin Wright
                           From Senator Jones

Question:

    What can we do to encourage other employers to hire individuals 
with disabilities and to create accessible workplaces?

Answer:

    My proposed solution is a 3-step hiring practice. The concept is to 
make the solution so straightforward, unobtrusive and compelling that 
business owners will see this hiring practice as one they must adopt--
because at a minimum, it's good for the bottom line. Once you give 
business owners a business reason to hire people with disabilities, 
they will find over time, that hiring people with disabilities is not 
only good business practice that positively reshapes the culture of 
their workforce, but one that also begins to solve the chronic epidemic 
of unemployment for adults with disabilities.
    If every small business in the United States hired just one adult 
with a disability, about 50 percent of the roughly 60 million Americans 
living with disabilities would find themselves hired, most of them for 
the first time. While my proposal may not immediately result in a 
living wage, it is a start. Most importantly, it provides people with 
disabilities entry into the labor force and a shot at more hours, 
development and responsibilities. While every hire may not be able to 
earn a living wage, a supplemental wage can have a substantive, 
positive impact on the lives of people living solely on SSI/SSDI, and 
on the lives of their families.

      Step 1--Offer business owners a tax credit for 1 year, 
equal to the payroll for one employee with a disability. The employee 
with a disability must be hired into competitive, integrated employment 
(at or above minimum wage; working with non-disabled co-workers) for at 
least 100 hours/year, on average. That's only 2 hours/week.
      Step 2--After the first year, offer the business owner 
the terms of ``Step 1'' on a second, additional hire of a person with a 
disability. (Maximum: 3 hires over 3 years.)
      Step 3--After the first 3 years, offer the business owner 
a dollar-for-dollar tax credit on 50 percent of the payroll spent on 
their employees with disabilities for the next 10 years.

Question:

    How can we support small business owners who are doing right by 
their employees with disabilities?

Answer:

    Apply the same business incentives, as above described, retroactive 
3 years.

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  Prepared Statement of Jack Stollsteimer, Deputy State Treasurer for 
    Consumer Programs, Pennsylvania Office of the State Treasurer, 
                        Harrisburg, Pennsylvania
    Good morning Chairman Collins, Ranking Member Casey, and other 
distinguished members of the Committee. I am Jack Stollsteimer, Deputy 
State Treasurer for Consumer Programs. On behalf of Pennsylvania 
Treasurer Joseph Torsella, I am grateful for the opportunity to appear 
before you today to discuss our department's ABLE (Achieving a Better 
Life Experience) program and how it is improving the lives of people 
with disabilities of all ages by helping them achieve economic self-
sufficiency.
    The PA ABLE program was launched by Treasurer Torsella in April 
2017 after a bipartisan group of state legislators, supported by a 
broad coalition of advocates for the disability community, enacted 
strong enabling legislation in 2016. The Pennsylvania ABLE Act includes 
provisions exempting ABLE accounts from Medicaid paybacks and offering 
account owners protection from creditors in state legal proceedings. 
Since the implementation of the PA ABLE Act our Legislature has 
continued its strong support of the program by creating a state tax 
deduction for contributions to ABLE accounts and through an annual 
appropriation for Treasury to market and administer the program.
    In the fifteen months since our program launch, we have seen a 
surge of interest for the benefits offered by the ABLE program from 
people with disabilities of all ages. We have a number of account 
owners who are working adults with disabilities who find the freedom 
for the first time to hold significant funds in their own account 
without jeopardizing their access to federal disability benefits truly 
liberating. We have parents of young children with disabilities saving 
long term for their child's future by making small but regular 
contributions without paying the up front fees required to open a 
special needs trust. We have older adults using ABLE funds to purchase 
adaptive technology to enable them to live more productive, fuller 
lives. We even have parents of account owners using ABLE accounts as 
estate planning vehicles to ensure their children's future financial 
security. Currently our ABLE program has more than 1,400 accountholders 
with $8.3 million dollars under management, and each of those account 
owners has their own story as to why ABLE is the best option for them 
to save, pay bills, and make debit card purchases through their PA ABLE 
account. We have made so much progress--but we have so much more work 
to do. There are over 60,000 children with disabilities in 
Pennsylvania; with ongoing support from federal and state policymakers, 
our goal is to reach as many of them as we can.
    Over time, the ABLE program can provide a means for people with 
disabilities to achieve greater self-sufficiency as they age as long as 
our federal partners continue to support the program's promise. The 
ABLE program works for people by allowing anyone with a qualifying 
disability a secure, tax-advantaged way to save or invest without 
affecting their government benefits. It also works because the Internal 
Revenue Service has broadly interpreted the definition of a ``Qualified 
Disability Expenses'', thereby allowing people with disabilities the 
flexibility to use the program throughout their lives, since the nature 
of an individual's expenses change to reflect their different stages in 
life. Simply put, the qualified expense needs of a 25-year-old worker 
in many respects are very different from the expenses of a 65-year old 
retiree.
    Right now, ABLE provides the flexibility to accommodate the 
changing needs of people as they age but we must ensure that remains 
true in the years to come. To that end, the Pennsylvania Treasury would 
strongly encourage the Senate to consider S.B. 817, the ABLE Adjustment 
Act. This bill would greatly increase the utilization of the program by 
allowing individuals with disabilities that started before age 46 to 
open ABLE accounts. Increasing the number of people with disabilities 
who can open accounts will strengthening the ABLE program from a fiscal 
perspective while allowing older adults who become disabled through 
accidents, chronic illness, or military service to use this tool for 
their economic stability and self-sufficiency.
        Questions for the Record Submitted to Jack Stollsteimer
                           From Senator Jones
Question:

    Mr. Stollsteimer, you state in your testimony that Pennsylvania 
currently has 1,400 ABLE accountholders, and that your goal is to reach 
the more than 60,000 children with disabilities in your state who could 
benefit from the program. Based on your respective expertise, what 
recommendations do you have for growing the ABLE program nationwide and 
increasing the accessibility of these accounts?

Answer:

    Critical to growing the ABLE program nationwide is the passage of 
the ABLE Adjustment Act, Senate Bill 817. Passage of S.B. 817 would 
greatly increase the utilization of the program by allowing individuals 
with disabilities that started before age 46 to open ABLE accounts. 
Increasing the number of people with disabilities eligible to open 
accounts will strengthening the ABLE program from a fiscal perspective 
while allowing older adults who become disabled through accidents, 
chronic illness, or military service to use this tool for their 
economic stability and self-sufficiency.

     
      
      
      
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                  Additional Statements for the Record

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