[House Hearing, 106 Congress]
[From the U.S. Government Publishing Office]
BARRIERS PREVENTING DISABILITY BENEFICIARIES FROM RETURNING TO WORK
=======================================================================
HEARING
before the
SUBCOMMITTEE ON SOCIAL SECURITY
of the
COMMITTEE ON WAYS AND MEANS
HOUSE OF REPRESENTATIVES
ONE HUNDRED SIXTH CONGRESS
FIRST SESSION
__________
MARCH 11, 1999
__________
Serial 106-5
__________
Printed for the use of the Committee on Ways and Means
U.S. GOVERNMENT PRINTING OFFICE
56-970 CC WASHINGTON : 1999
------------------------------------------------------------------------------
For sale by the U.S. Government Printing Office
Superintendent of Documents, Congressional Sales Office, Washington, DC 20402
COMMITTEE ON WAYS AND MEANS
BILL ARCHER, Texas, Chairman
PHILIP M. CRANE, Illinois CHARLES B. RANGEL, New York
BILL THOMAS, California FORTNEY PETE STARK, California
E. CLAY SHAW, Jr., Florida ROBERT T. MATSUI, California
NANCY L. JOHNSON, Connecticut WILLIAM J. COYNE, Pennsylvania
AMO HOUGHTON, New York SANDER M. LEVIN, Michigan
WALLY HERGER, California BENJAMIN L. CARDIN, Maryland
JIM McCRERY, Louisiana JIM McDERMOTT, Washington
DAVE CAMP, Michigan GERALD D. KLECZKA, Wisconsin
JIM RAMSTAD, Minnesota JOHN LEWIS, Georgia
JIM NUSSLE, Iowa RICHARD E. NEAL, Massachusetts
SAM JOHNSON, Texas MICHAEL R. McNULTY, New York
JENNIFER DUNN, Washington WILLIAM J. JEFFERSON, Louisiana
MAC COLLINS, Georgia JOHN S. TANNER, Tennessee
ROB PORTMAN, Ohio XAVIER BECERRA, California
PHILIP S. ENGLISH, Pennsylvania KAREN L. THURMAN, Florida
WES WATKINS, Oklahoma LLOYD DOGGETT, Texas
J.D. HAYWORTH, Arizona
JERRY WELLER, Illinois
KENNY HULSHOF, Missouri
SCOTT McINNIS, Colorado
RON LEWIS, Kentucky
MARK FOLEY, Florida
A.L. Singleton, Chief of Staff
Janice Mays, Minority Chief Counsel
______
Subcommittee on Social Security
E. CLAY SHAW, Jr., Florida, Chairman
SAM JOHNSON, Texas ROBERT T. MATSUI, California
MAC COLLINS, Georgia SANDER M. LEVIN, Michigan
ROB PORTMAN, Ohio JOHN S. TANNER, Tennessee
J.D. HAYWORTH, Arizona LLOYD DOGGETT, Texas
JERRY WELLER, Illinois BENJAMIN L. CARDIN, Maryland
KENNY HULSHOF, Missouri
JIM McCRERY, Louisiana
Pursuant to clause 2(e)(4) of Rule XI of the Rules of the House, public
hearing records of the Committee on Ways and Means are also published
in electronic form. The printed hearing record remains the official
version. Because electronic submissions are used to prepare both
printed and electronic versions of the hearing record, the process of
converting between various electronic formats may introduce
unintentional errors or omissions. Such occurrences are inherent in the
current publication process and should diminish as the process is
further refined.
C O N T E N T S
__________
Page
Advisory of March 4, 1999, announcing the hearing................ 2
WITNESSES
Social Security Administration, Hon. Kenneth S. Apfel,
Commissioner of Social Security; accompanied by Susan Daniels,
Ph.D., Deputy Commissioner for Disability and Income Security
Programs....................................................... 13
U.S. General Accounting Office, Cynthia M. Fagnoni, Director,
Income Security Issues, Health, Education, and Human Services
Division; accompanied by Brett Fallavollita, Senior Evaluator.. 26
______
Consortium for Citizens with Disabilities, Social Security Task
Force, Mary Gennaro............................................ 45
Johnson, Hon. Nancy L., a Representative in Congress from the
State of Connecticut........................................... 5
Manic Depressive Association, and National Alliance for the
Mentally Ill, Jim McNulty...................................... 54
National Association of Developmental Disabilities Councils, Mary
Gennaro........................................................ 45
National Association of Rehabilitation Professionals in the
Private Sector, Jeffrey E. Carlisle............................ 61
Ramstad, Hon. Jim, a Representative in Congress from the State of
Minnesota...................................................... 8
Services for Independent Living, Richard Blakley................. 40
SUBMISSIONS FOR THE RECORD
Corporation for Supportive Housing, New York, NY, John Rio,
statement and attachment....................................... 67
San Francisco Network on Disability, Berkeley, CA, Jean Nandi,
letter......................................................... 71
Stark, Hon. Fortney Pete, a Representative in Congress from the
State of California, letter and attachments.................... 72
BARRIERS PREVENTING DISABILITY BENEFICIARIES FROM RETURNING TO WORK
----------
MARCH 11, 1999
House of Representatives,
Committee on Ways and Means,
Subcommittee on Social Security,
Washington, DC.
The Subcommittee met, pursuant to notice, at 10 a.m., in
room 1100, Longworth House Office Building, Hon. E. Clay Shaw,
Jr., (Chairman of the Subcommittee) presiding.
[The advisory announcing the hearing follows:]
ADVISORY
FROM THE COMMITTEE ON WAYS AND MEANS
SUBCOMMITTEE ON SOCIAL SECURITY
FOR IMMEDIATE RELEASE Contact: (202) 225-9263
March 4, 1999
No. SS-4
Shaw Announces Hearing on
Barriers Preventing Disability Beneficiaries
From Returning to Work
Congressman E. Clay Shaw, Jr., (R-FL), Chairman of the Subcommittee
on Social Security of the Committee on Ways and Means, today announced
that the Subcommittee will hold a hearing on barriers preventing Social
Security disability beneficiaries from returning to work. The hearing
will take place on Thursday, March 11, 1999, in the main Committee
hearing room, 1100 Longworth House Office Building, beginning at 10:00
a.m.
Oral testimony will be heard from invited witnesses only. Witnesses
will include program experts, representatives of organizations
promoting the self-sufficiency of people with disabilities, providers
of services assisting return to work efforts, and consumers and
potential consumers of those services. However, any individual or
organization not scheduled for an oral appearance may submit a written
statement for consideration by the Committee and for inclusion in the
printed record of the hearing.
BACKGROUND:
Social Security's disability programs help protect workers and
their families against financial hardship if workers experience
disabling conditions that prevent them from working. Between 1988 and
1998, the number of working-age recipients on the Social Security and
Supplemental Security Income (SSI) disability rolls increased 60
percent. Today, there are 4.7 million individuals receiving Social
Security disability benefits and 4.3 million receiving SSI disability
benefits. In addition, disabled recipients are staying on the rolls
longer than in the past because of increased life expectancy, earlier
onset of disability, and increased awards for mental impairments, which
manifest at younger ages.
In 1996, fewer than six percent of new disability recipients were
referred to State vocational rehabilitation agencies for services, and
historically less than one-half of one percent of disabled recipients
have left the rolls because of successful rehabilitation. These facts
underscore the need for initiatives designed to encourage those
disabled recipients who want to receive rehabilitation services and to
re-enter the workforce.
To help Social Security and SSI disability recipients who want to
return to self sufficiency, H.R. 3433, the ``Ticket to Work and Self-
Sufficiency Act,'' was introduced by then Subcommittee Chairman Jim
Bunning and Ranking Minority Member Barbara Kennelly, and was passed
overwhelmingly by the House by a vote of 410 to 1 during the 105th
Congress. No action was taken by the Senate.
However, during the 106th Congress, S. 331, the ``Work Incentives
Improvement Act of 1999,'' has been introduced in the Senate and
approved by the Finance Committee. Many of the provisions in H.R. 3433
are included in this legislation.
In announcing the hearing, Chairman Shaw stated: ``Many individuals
with disabilities can and want to work, but the current system offers
barriers, not opportunities. Everyone should participate in, and
benefit from, our booming economy. The time to act to provide real hope
and opportunity for disabled workers is now.''
FOCUS OF THE HEARING:
During the hearing, the Subcommittee will consider the views of
program experts, consumers, and service providers on the barriers which
prevent disability recipients from returning to work. The Subcommittee
will also evaluate recommendations on what changes in the law are
needed to remove those barriers.
DETAILS FOR SUBMISSION OF WRITTEN COMMENTS:
Any person or organization wishing to submit a written statement
for the printed record of the hearing should submit six (6) single-
spaced copies of their statement, along with an IBM compatible 3.5-inch
diskette in WordPerfect 5.1 format, with their name, address, and
hearing date noted on a label, by the close of business, Thursday,
March 25, 1999, to A.L. Singleton, Chief of Staff, Committee on Ways
and Means, U.S. House of Representatives, 1102 Longworth House Office
Building, Washington, D.C. 20515. If those filing written statements
wish to have their statements distributed to the press and interested
public at the hearing, they may deliver 200 additional copies for this
purpose to the Subcommittee on Social Security office, room B-316
Rayburn House Office Building, by close of business the day before the
hearing.
FORMATTING REQUIREMENTS:
Each statement presented for printing to the Committee by a
witness, any written statement or exhibit submitted for the printed
record or any written comments in response to a request for written
comments must conform to the guidelines listed below. Any statement or
exhibit not in compliance with these guidelines will not be printed,
but will be maintained in the Committee files for review and use by the
Committee.
1. All statements and any accompanying exhibits for printing must
be submitted on an IBM compatible 3.5-inch diskette in WordPerfect 5.1
format, typed in single space and may not exceed a total of 10 pages
including attachments. Witnesses are advised that the Committee will
rely on electronic submissions for printing the official hearing
record.
2. Copies of whole documents submitted as exhibit material will not
be accepted for printing. Instead, exhibit material should be
referenced and quoted or paraphrased. All exhibit material not meeting
these specifications will be maintained in the Committee files for
review and use by the Committee.
3. A witness appearing at a public hearing, or submitting a
statement for the record of a public hearing, or submitting written
comments in response to a published request for comments by the
Committee, must include on his statement or submission a list of all
clients, persons, or organizations on whose behalf the witness appears.
4. A supplemental sheet must accompany each statement listing the
name, company, address, telephone and fax numbers where the witness or
the designated representative may be reached. This supplemental sheet
will not be included in the printed record.
The above restrictions and limitations apply only to material being
submitted for printing. Statements and exhibits or supplementary
material submitted solely for distribution to the Members, the press,
and the public during the course of a public hearing may be submitted
in other forms.
Note: All Committee advisories and news releases are available on
the World Wide Web at ``http://www.house.gov/ways__means/''.
The Committee seeks to make its facilities accessible to persons
with disabilities. If you are in need of special accommodations, please
call 202-225-1721 or 202-226-3411 TTD/TTY in advance of the event (four
business days notice is requested). Questions with regard to special
accommodation needs in general (including availability of Committee
materials in alternative formats) may be directed to the Committee as
noted above.
Chairman Shaw. Good Morning.
Today the Subcommittee will consider ways to provide new
opportunities for individuals with disabilities to return to
the work force and lead fuller, more productive lives. As we
all know, this Subcommittee and the Full Ways and Means
Committee have played a key role in this effort in recent
years, leading up to the nearly unanimous passage last year of
H.R. 3433, the Ticket to Work and Self-Sufficiency Act.
While that bill did not make it all the way to the
legislative finish line, there is a real cause for confidence
that we can reach our common goal this year. My predecessor,
Chairman Jim Bunning and Ranking Member Barbara Kennelly, and
the other Members of the Subcommittee, spent countless hours
over several years holding hearings and refining what became
last year's bill. For those who were not paying attention, that
bill promised to ease the transition of disability
beneficiaries into work by providing easier access to services
and an additional 2 years of Medicare coverage.
I think we are all in agreement that this legislation will
enable thousands of individuals with disabilities who want to
work to do so. It preserves the Social Security and
Supplemental Security Income Disability Programs, as a much
needed safety net for people who are unable to work. As this
Congress gets rolling, we have a fairly clear road map on how
to proceed. I know there is some lingering disagreement as to
some of the details, but these details are minor in comparison
with the total bill.
For my money, the differences are just that: details that
can and will be worked out as we proceed. Given how far we have
already come together, I am confident we can make this work.
I welcome all of our witnesses and guests and look forward
to hearing everyone's testimony this morning.
[The opening statement follows:]
Opening Statement of Hon. E. Clay Shaw, Jr., a Representative in
Congress from the State of Florida
Today the Subcommittee will consider ways to provide new
opportunities for individuals with disabilities to return to the
workforce and lead fuller, more productive lives.
As we all know, this Subcommittee and the full Ways and Means
Committee have played a key role in this effort in recent years,
leading up to the nearly unanimous passage last year of H.R. 3433, the
Ticket to Work and Self-Sufficiency Act. While that bill didn't make it
all the way to the legislative finish line, there is real cause for
confidence that we can reach our common goal this year.
My predecessor, Chairman Jim Bunning, and Ranking Member Barbara
Kennelly and the other Members of this Subcommittee spent countless
hours over several years holding hearings and refining what became last
year's bill. For those who weren't paying attention, that bill promised
to ease the transition of disability beneficiaries into work by
providing easier access to services and an additional 2 years of
Medicare coverage.
I think we are all in agreement that this legislation would enable
thousands of individuals with disabilities who want to work to do so.
And it preserves the Social Security and Supplemental Security Income
disability programs as a much-needed safety net for people who are
unable to work.
So as this Congress gets rolling, we have a fairly clear roadmap
for how to proceed. I know there is some lingering disagreement as to
some details. But for my money, the differences are just that--details
that can and will be worked out as we proceed. And given how far we
have already come together, I am confident we can make this work.
I welcome all our witnesses and guests, and look forward to hearing
today's testimony.
Chairman Shaw. Mr. Matsui.
Mr. Matsui. Thank you very much, Mr. Chairman. I really
appreciate the fact that you are holding this hearing today. I
would like to personally thank you, and your staff, for working
together with Members of our side of the aisle on this
particular issue. I understand we are still discussing the
matter and I appreciate that opportunity.
If the Chair recalls, last year after the House had passed
its Ticket to Work version of our legislation, the bill
eventually died in the Senate before we were able to get it to
the President. We adjourned. Mainly what occurred was Senators
Jeffords and Kennedy introduced a bill that would have
extended, for a longer period of time, the 2-year additional
period of Medicare coverage. They recently, as those in the
audience and others know, passed their version of the
legislation on a 16-to-2 vote, out of the Senate Finance
Committee. I think it was just last week, in fact.
I believe the issue again will be addressed in the
conference, or perhaps on the House floor, or perhaps in the
Full Committee. We all know that one of the most important
things for those that are disabled is not only vocational
rehabilitation opportunities, but also health care. Health care
is an extremely critical component of making sure that people
are given the opportunity for self-sufficiency.
So, it is my hope we can work together and see if we can,
perhaps, move more in the direction of the Jeffords-Kennedy
legislation as time goes on and as this legislation proceeds
further. I believe there is bipartisan support for it, not only
in the Senate, but also in the House.
Again, I think this hearing is extremely important. It
doesn't have the visibility that many other hearings of the
Congress have, but it will have a significant bearing on
millions of Americans and their families.
Thank you, Mr. Chairman.
Chairman Shaw. Thank you, Bob.
We have as our first panel, Nancy Johnson and Jim Ramstad,
two valuable Members of the Ways and Means Full Committee. As
both of you know, we have your full statements. Without
objection they will be made part of the record. You may
proceed.
Mrs. Johnson.
STATEMENT OF HON. NANCY L. JOHNSON, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF CONNECTICUT
Mrs. Johnson of Connecticut. Thank you very much, Mr.
Chairman. First of all, I thank you and Mr. Matsui and the
Subcommittee for holding this hearing on what is really an
extremely important bill. I am going to be introducing the bill
that has been introduced on the Senate side, with Mr. Lazio,
from Commerce and many Democrats--I hope many from this
Subcommittee--as well as Republicans, because there is a
tremendous amount of support for this bill.
There is a key difference between the really outstanding
work this Subcommittee did on the Ticket to Work bill last
year, which is the predecessor, the parent, the core of what we
need to do for the disabled, and the initiative that some of us
have worked on. The key difference is in access to medical
benefits. That is the bottom line.
As you well know, in the old days of welfare, if someone
got a part-time job, they were off the program. Even if they
could see that they could move up to full-time salary; if it
wasn't a plan with health benefits and their children needed
benefits, they often could not, in all good conscience, get off
welfare. They could not afford to lose access to the Medicaid
benefits. We have put our disabled people in exactly the same
position.
There are many barriers to a disabled person getting into
the work force. One is, you go $1 over the $500 threshold, you
lose everything. So, they will get a part-time job and leave
themselves in the position. This is so ironic. You have people
come to you and sit down and tell you, I am working 10 hours at
Stop-and-Shop. It's the Christmas rush. They want me to work
more hours. I want to work more hours but I can't, because the
government won't let me. If I work a little bit over that time,
then I lose all of my benefits, both the monetary benefits and
the health benefits.
Ticket to Work and the work of this Subcommittee had dealt
with the issue of declining the benefits as salary grows. It
has also dealt with the problem of letting someone who has left
the program reenter the program if their circumstances change
rapidly and easily. But we have dealt less well with
maintaining access to health benefits. Particularly for people
who are disabled as a result of mental illness, with the new
drugs that are available which are wonderful, effective and
very expensive, their independence and their ability to work
depends flat out on their access to that drug benefit. They
must be able to maintain access to Medicaid if they are going
to work. This bill really does a lot to encourage States to
open up Medicaid to their disabled population, even when that
person is working. Neither level of government is still
subsidizing their income. That is why Energy and Commerce have
to do a lot of work on this in order for it to be an effective
program.
We did increase access to Medicare benefits. We have to do
it over a slightly longer period of time so there can be the
confidence that not only will they be able to have access to
health care, but they will be able to have it--in a sense--
permanently. If we enlarge that access to 10 years, from the
current 6 years--currently they have 4 years; we added 2 years;
it's 6 years--we will give them the confidence over the course
of that time that the problem of access to medical health
benefits will be solved for us as a society, according to
income.
That is really what many of us are focusing on. The issue
of mental health benefits has brought that squarely to the
fore. If a person is taking one of the very expensive, but very
effective medications for schizophrenia or bipolar whatever,
they can function very, very well. But they have two problems:
access to that medication and the problem of relapses. They
have to be able to get back in the program and have that
support for short periods of time if they have a problem.
I thank you for your good work in this area. I thank you
for putting it high on your agenda. I hope we will have a good,
solid bipartisan bill that will end up on the President's desk.
Thank you.
[The prepared statement follows:]
Statement of Hon. Nancy L. Johnson, a Representative in Congress from
the State of Connecticut
I want to commend Representatives Shaw and Matsui for
organizing a hearing on this important issue of helping
disabled people return to work. Under the leadership of
Representatives Bunning and Kennelly, this subcommittee devoted
considerable time and effort last session into identifying the
barriers that prevent people on Social Security Disability and
Supplemental Security Income from returning to work. As a
result of their work, the House passed, with significant
bipartisan support, the Ticket to Work Act. I am pleased that
Chairman Shaw and Ranking Member Matsui have demonstrated their
commitment to making this issue a priority again this session.
It is critical that we have federal disability programs to
support people who have disabilities that prevent them from
gainful employment. When the nature of those programs become
barriers to those people returning to work when they are able,
we need to identify and remove those barriers. The legislation
put together by this subcommittee last year did this for many
of the barriers within the cash assistance program, but it was
not sufficient because it did not address the largest barrier:
lack of affordable health coverage. By guaranteeing health
coverage to someone on the system, but removing that access
when they return to work, we have created a system that any
rationale person would not want to leave.
I am very passionate about this issue because I have heard
many true life stories directly from my constituents who are
impacted. I have heard about a gentleman with mental
retardation who works 10 hours a week in a community grocery
store. The work is critical to his mental and emotional health
because it gives him the chance to socialize and leave his
home. His employer is very pleased with his work and would like
to give him more hours. But the man is confronted with the
reality that if he works more than 10 hours, he will earn more
than $500 and lose his disability benefits all at once.
One of the meetings that caused me to be involved in this
issue was with a group of people struggling with severe mental
illness. They portray some of the most compelling reasons for
this legislation. Returning to work is a significant task for
these people, not only because of the financial concerns but
also because of the uncertainty of their illness. The
effectiveness of psychotropic drugs gives these people the
ability to maintain mental and emotional health so they can
perform consistently in a work environment. Without these drugs
and therapy, returning to work is very difficult. So the most
important thing for these people is having access to health
coverage to help afford these treatments. In addition, a
reoccurrence of their illness could happen at any time, so they
need to be assured that the disability system will support and
understand them during a relapse.
I have also heard from a young man who has had two organ
transplants because of a bout with childhood diabetes. He
requires significant health care services and relies on
Medicare to provide them. Without the guarantee that he can
continue to receive health coverage, returning to work is a no-
win situation. He wants to work, but would have to earn a
significant income to make up for the loss of his health
insurance.
It is difficult to measure completely the impact that
having a job makes in a person's life. It gives people a sense
of personal value and identity, and there is something very
powerful about being able to support oneself. When people
return to work there are also positive impacts for our country.
If only one percent of the 7.5 million SSI and SSDI recipients
go to work and forgo cash payments from the Social Security
Administration (SSA), this would result in a cash savings of
$3.5 billion to the federal Treasury over the lifetimes of
these individuals. If we factor in the income taxes these
individuals would pay, their lack of need for food stamps,
subsidized housing, and other forms of assistance, that $3.5
billion dollar figure would be even higher.
In this time of low unemployment, we also need to consider
the positive benefit of having more workers in our economy. To
stay strong, our economy needs access to a qualified and
enthusiastic pool of potential workers. People currently on SSI
and SSDI are a tremendous untapped resource. Their enthusiasm
alone would make a significant contribution to our workforce.
The Senate has taken the lead on this issue in the 106th
Congress with broad-based bipartisan legislation. Their
greatest contribution to the debate is their commitment to
expanding health care coverage, through Medicare and Medicaid,
for people returning to work. This is an important issue that
will directly impact people who want desperately to return to
work and become independent from government assistance. We
should follow through on our work last session and work with
the Senate to make sure that we address the critical need for
health insurance. Thank you for the opportunity to testify this
morning.
Chairman Shaw. Thank you.
Mr. Ramstad.
STATEMENT OF HON. JIM RAMSTAD, A REPRESENTATIVE IN CONGRESS
FROM THE STATE OF MINNESOTA
Mr. Ramstad. Thank you, Mr. Chairman and Members of the
Subcommittee, for holding this important hearing to talk about
the barriers which prevent people with disabilities from
working.
This is an issue, Mr. Chairman, about which I feel
passionately. It is an issue I have heard about from my friends
with disabilities for 19 years. Since my first election into
the Minnesota State Senate in 1980, I have had a Disabilities
Advisory Committee. By far, the number one problem discussed by
people with disabilities on the Risk Advisory Committee has
been work disincentives within the Federal programs designed to
assist people with disabilities.
The most compelling issues facing people who desperately
want to work and contribute to society are the program rules
that make working too costly and too complicated. Mr. Chairman,
the legislation which was alluded to by Ranking Member Matsui
and talked about by our friend, Nancy Johnson, has 54
cosponsors, already, in the Senate. Certainly, any time my two
senators can agree on anything, it is a historic day. Two of
the names on that bill are Paul Wellstone and Rod Grams. There
is a bipartisan working group already sponsoring this
legislation.
We have got to take steps to prevent abuses in the system.
In so doing, however, we also have to tear down the barriers
that prohibit Americans with disabilities from living up to
their full potential. That is simply wrong. These programs,
after all, were designed as safety nets, not steel cages.
Chairman Shaw, you have been a leader in passing the
monumental and highly successful Welfare Reform legislation. I
have heard you say many times, and I couldn't agree more, that
preventing people from working runs counter to the American
spirit. It is a spirit that thrives on individual achievements
and societal contributions.
With our economy humming as it is and growing so rapidly,
we need skilled workers. Individuals with disabilities are
eager and highly qualified to meet the employment needs that
are out there in the marketplace. This is the time to deal with
this issue. It is not only the right thing to do, it is the
cost-effective thing to do. Discouraging people with
disabilities from working, as the present system clearly does,
earning a regular paycheck, paying taxes, and moving off public
assistance results in reduced Federal revenues.
This is something that has hit near and dear to home. One
of my best friends, who happens to be a person with
quadriplegia, Tom Habin, worked on my first congressional
staff. A person who is quadriplegic needs catheters, attendant
care, and can't take his or her own showers or go to the
bathroom. Mr. Habin was employed on our staff. Given the
limitations and the payscales we have, it was a very sad day--
one of the saddest days in my life--when he came to me and he
said, ``Jim, I now risk losing my medical benefits. I can't
work for you any more and you can't pay me enough to make it
worth my while.'' That is wrong to have a built-in disincentive
to a good, smart person who could contribute so much.
Now he spends most of his time in his apartment. He has to
cling to those benefits. These people are scared, deathly
scared, of losing those important, life-sustaining benefits.
Those benefits enable them to have some dignity of independent
living. That is why I feel so passionately about this issue. If
there is anything we need to work on in a bipartisan way, it is
this issue.
That is why I am so grateful you are sitting in that chair,
Clay, and that we have the bipartisan spirit on this
Subcommittee, and hopefully on the Full Committee and the
Congress, to knock down these barriers. We need to do this so
these people can truly enjoy the dignity of independent living
and be contributors in the marketplace.
My own State of Minnesota is implementing a pilot program,
right now, to help individuals to return to work. With the
assistance of disability experts and advocates in Minnesota,
Mr. Chairman, our State legislature is already working on
limited legislation and wants Congress to pass the bill that
Nancy and I are cosponsoring. They are in a position to react
to any additional legislation that Congress passes.
Again, Mr. Chairman, thank you very much for holding this
hearing today and for your leadership on this issue. I want to
also thank your Subcommittee staff who have been very helpful
in allowing my staff and me to work with them and you on these
important issues. I am excited to continue our work together in
helping people with disabilities return to work. As far as I am
concerned, there is no higher calling for all of us as
individual Members of Congress.
Thank you, Mr. Chairman.
[The prepared statement follows:]
Statement of Hon. Jim Ramstad, a Representative in Congress from the
State of Minnesota
Mr. Chairman, I want to thank you and the Subcommittee for
holding this important hearing to discuss those barriers which
prevent people with disabilities from working.
The staff of the House Republican Caucus on Disabilities
and I recently met with a number of advocates for people with
disabilities--some of whom are in this room today--to talk
about issues of importance to them. By far the number one topic
discussed that day was work disincentives within those federal
programs designed to assist people with disabilities. This is
also one of the most important issues to the members of my own
Disabilities Advisory Committee in Minnesota.
Like many of you, I have heard countless stories of
frustrated individuals who desperately want to work and
contribute to society but are literally prohibited from doing
so because confusing federal programs and rules make working
too difficult or expensive. Certainly, we must take steps to
prevent abuse of the system. But in doing so, we must make sure
our efforts do not prohibit Americans with disabilities from
living up to their full potential. After all, these programs
were designed as safety nets, not iron cages.
Chairman Shaw, as a leader in passing the monumental and
highly successful welfare reform legislation, you know how
important it is for people to work. As I have said many times,
preventing people from working runs counter to the American
spirit--a spirit that thrives on individual achievements and
societal contributions.
Realistically, we also know that our growing economy is in
need of skilled workers. Certainly, individuals with
disabilities are eager and highly qualified to meet those
employment needs. In addition, creating work incentives for
people with disabilities is not just humane public policy, it
is sound fiscal policy. Discouraging people with disabilities
from working, earning a regular paycheck, paying taxes and
moving off public assistance results in reduced federal
revenues.
Like everyone else, people with disabilities have to make
decisions based on financial reality. Should they consider
returning to work or even make it through vocational
rehabilitation, the risk of losing vital federal health
benefits often becomes too threatening to future financial
stability. As a result, they are compelled not to work. Given
the sorry state of present law, that's generally a reasonable
and rational decision.
Eliminating the current barriers to work that so many
individuals face is not just the smart thing to do, it is the
right thing to do. That's why, in 1993, I worked with Rep.
Stark on legislation to address the disincentives people with
disabilities face in federal programs. Last year, I also
strongly supported the efforts of this Subcommittee to pass
legislation. While we were not successful in the 103rd or 104th
Congress to enact meaningful legislation, I remain hopeful that
we will get something done this year.
I am confident we can and will work out all the aspects of
this important legislation. I am glad to report that my own
state of Minnesota is enthusiastic about implementing pilot
programs to help individuals return to work. With the
assistance of disability experts and advocates in Minnesota,
the state legislature is already working on limited legislation
and should be able to react to any additional legislation this
Congress passes.
Mr. Chairman, thanks again for holding this hearing today.
Your Subcommittee staff continues to be very gracious in
allowing me and my staff to work with you on these important
issues, and I am excited to continue our work together in
helping people with disabilities return to work.
Chairman Shaw. Thank you, Jim. I can see very clearly that
you feel very passionately about your testimony, about the bill
that you and Nancy are filing together. Hopefully, the young
man that you referred to, the quadriplegic that used to be on
your staff, can be welcomed back to your staff or some
productive way of life. You spoke of both of your Senators. I
can't help but ask how your Governor weighs in on this.
[Laughter.]
You talk about a democracy.
Mr. Ramstad. Well, sir, I never presume to speak for my
dear friend, Jessie Ventura, our distinguished Governor.
Knowing that Jessie has a big heart and is also a smart man,
given his sense of rationality and his feelings for people with
disabilities, I would be willing to bet my last dollar that
Jessie would support this legislation. I will get back to you
on that by the end of the day. He has always been an advocate
for people with disabilities and we have worked together on a
number of events to raise money for people with disabilities.
So, I am sure that Jessie is with us on this.
By the way, Mr. Habin, the gentleman I referred to earlier
looks forward to coming out to testify on this bill and looks
forward to meeting you.
Chairman Shaw. Very good, very good. We certainly look
forward to welcoming him before the Subcommittee.
I have to tell you that one of things my new Governor in
Florida, Mr. Bush, was looking forward to in going to his first
Governors' conference was to meet Jessie. I think that was the
high point.
Do any of the Members of the Subcommittee have any
questions?
Mr. Matsui.
Mr. Matsui. Thank you. Representative Johnson, I appreciate
the fact that both you and Jim represent the laws you are going
to be introducing in this bill. I think that is really great. I
want to thank you very much for it. Is it my understanding that
it will be a companion bill, exactly the same bill that the
Jeffords-Kennedy bill is, or will there be some changes in it?
Do you happen to know?
Mrs. Johnson of Connecticut. If any in this Subcommittee
want to join, we generally don't ask Clay, as Chairman of the
Subcommittee, and I doubt that Mr. Lazio actually asked you as
Ranking Member on the Subcommittee, but we will talk about it
afterward when we will have a broader base. Because the most
controversial provisions are for Energy and Commerce, in terms
of Medicaid access and putting some grant money out there to
encourage the States to really open up their Medicaid Programs,
we have yielded to the Energy and Commerce members to be the
leads.
Mr. Matsui. So it is a work in progress?
Mrs. Johnson of Connecticut. Yes. We will talk with you
about it later in the day and update you on where that is.
Sometimes that takes a little longer than it does on our
Subcommittee.
Mr. Matsui. Thank you.
Mrs. Johnson of Connecticut. I would just like to make one
additional comment. It is something I have gotten from talking
to people who are profoundly affected by this legislative
proposal. I have certainly understood the importance of
disabled people having the right to work and what it did for
them personally and what it does for our society. But I did not
understand what we do to them when we let them into the system
part way. Then they become a part-time employee who cannot
participate in any emergency of the business.
There is a flood or a Christmas rush. Everyone else works a
little overtime, but they can't. We finally put them in a
position of always being the employee who says no. Even though,
actually, they are the employee who wants, more than almost
anyone else, to work more. We sock them in and, thereby, we
keep them labeled. We keep them at odds with the people around
them. We keep them unable to accept their fair share of any new
workload that comes up. What we do to them to keep them
identified as other and less competent, even after we let them
into the work force under the current plan, is positively
criminal. I am very proud of the work that this Subcommittee
and our Ways and Means Committee did last year on this issue. I
think if we can go forward rapidly, we can get the health
benefit issue addressed, as well.
Chairman Shaw. Do any of the Members--yes?
Mr. Hulshof. Mr. Chairman, just a brief statement. First of
all, I also applaud you for holding the hearing. I think you
have opened yourself up to the label compassionate
conservative. I happen to think that is a very positive label.
Certainly, Mr. Ramstad, we appreciate your work as far as the
caucus on disabilities and the lead you have taken. I am proud
to be a member of that caucus with you. Thank you for being
here.
Mr. Chairman, and for Mr. Matsui's benefit as well, we have
got a bill we have been working on that is actually a blend of
Ticket to Work and the Kennedy-Jeffords bill. Mr. Chairman, you
hit it right on point saying that, I think, we are all in
agreement on where we need to be--but some of the details--for
instance the bill that we are working on. We are concerned
about the sunset provision in Kennedy-Jeffords on the Ticket
portion. That is, it sunsets the program by 2004. There is a
vocational evaluation provision in the House bill that is
eliminated in Kennedy-Jeffords. Some things like that we are
really trying to blend together. We want to have the best
product available. We are glad to have you here, Mr. Chairman.
Mr. Ramstad. Mr. Chairman, may I respond briefly? There was
an oversight on my part, along with Ms. Johnson and Mr. Lazio,
nobody has worked harder on this than Mr. Hulshof. That was an
oversight on our part, certainly. We appreciate your great
input on the caucus and also in working on this legislation.
You have certainly played a major role, to date. I know you
will continue to do so.
Mrs. Johnson of Connecticut. I would like to say, too, that
I really appreciate Mr. Hulshof's leadership and dedication to
this and getting into the details--the little differences--
between the bills. Many of us have been, sort of, a little more
focused on getting the other Committee mobilized and moving
forward. This does have to be a Joint Committee effort this
year. Last year we were able to bring it through our own
Committee, but we really have to broaden that base. Mr.
Hulshof, you have really done yeoman's work on this and we
appreciate it very much.
Chairman Shaw. Mr. Doggett.
Mr. Doggett. Well, I would just like to add a second to
that broadening the base part. I share the passion both of you
have voiced, largely from working on related issues at the
State level for much of the last 25 years. I am afraid that if
we don't deal more comprehensively with the health insurance
barrier, we will do the very thing that you, Mrs. Johnson,
indicated that we do not want to do. That is, to just put them
in part way and create false expectations that we are
addressing this issue when, in fact, that health insurance
barrier remains so very severe. One would think, Jim, if you
can get that kind of agreement among your senators in
Minnesota, we ought to be able to reach across all parts of the
aisle and get it over here in the House and make some
bipartisan progress to deal with this matter in a comprehensive
fashion, rather than in a piecemeal fashion.
Mr. Ramstad. Certainly, we are not ignoring your side. We
are trying to get our act together first. We want a broad
bipartisan support for this bill, like they have in the Senate.
We are going to get it, with your help.
Mrs. Johnson of Connecticut. There is the assumption in
this bill, that Medicare is going to find a way to provide, at
least, critical prescription drugs. We don't specifically
address that in this bill. But if Medicare fails to do that, we
will have to come back and specifically address that because it
is so critical to many who are disabled. The issue of Medicaid
coverage is extremely important because that is the only health
program in the Nation, public or private, that covers personal
assistance care. For many people, without that kind of help in
getting out the door every morning and getting back and other
workplace support, we can't do this. This has to be a much
broader-based approach in terms of health benefits. We were
able to mobilize the last Congress.
Chairman Shaw. Any further Members?
[No response.]
I want to thank this panel. You have certainly brought
something to us that we are going to be taking a really hard
look at. Let us not forget that we need to pay for the
legislation, so I hope you will have some recommendations for
us in that way. What you are asking for, I can see, is very
badly needed.
I have been advised that we may have as many as six votes
on the floor. We will return as quickly as we possibly can.
Everyone has plenty of time to go walk around in the hall for
awhile, if you want to. We will commence this hearing just at
the conclusion of the last vote. We stand in recess.
[Recess.]
Chairman Shaw. The Subcommittee will come back to order.
For our next witness we have Kenneth Apfel, Commissioner of
Social Security. He is accompanied by Dr. Susan Daniels, Deputy
Commissioner for Disability and Income Security Programs.
STATEMENT OF HON. KENNETH S. APFEL, COMMISSIONER OF SOCIAL
SECURITY, SOCIAL SECURITY ADMINISTRATION; ACCOMPANIED BY SUSAN
DANIELS, PH.D., DEPUTY COMMISSIONER FOR DISABILITY AND INCOME
SECURITY PROGRAMS
Mr. Apfel. Thank you Mr. Chairman, Mr. Ranking Member, and
Members of the Subcommittee for inviting me to speak with you
today about initiatives to help Social Security and SSI,
supplemental security income, disability beneficiaries return
to work. Joining me today is Dr. Susan Daniels, our Deputy
Commissioner for Disability and Income Security Programs, who
has been a tireless supporter of efforts to promote work.
Mr. Shaw, Mr. Matsui, I believe the best element of welfare
reform has been changing the dynamic about work. Ever since my
first graduate degree in rehabilitation counseling nearly three
decades ago, I have believed in work as a pillar, a well to
drink from, for people and for families. As a nation, we are
best served when all of our citizens have the opportunity to
contribute their talent, ideas, and energy. This can and should
be the year in which we make significant progress toward this
goal for disabled Americans.
Today, I would like to provide a brief overview of the
Administration's efforts to help return Americans with
disabilities to work and also outline some specific proposals
now before Congress. Historically, only a small number of our
approximately 10 million Social Security and SSI, supplemental
security income, disability beneficiaries attempt to return to
work each year--in fiscal year 1998, about 10,000
beneficiaries. But many more individuals with disabilities want
to return to work. It is the Administration's fundamental goal
to remove barriers to work.
Last year, the President established a National Task Force
for Employment of Adults With Disabilities to create an
aggressive, coordinated, national policy to promote gainful
employment. As part of the task force, Vice President Gore
announced last September the awarding of grants by SSA to nine
States, totaling $4.4 million, to develop innovative return-to-
work projects. In January we announced that SSA will fund a
Disability Research Institute that will help provide
policymakers with pertinent information and research data. In
February we announced a proposal to increase the amount that
disabled adult beneficiaries can earn while still remaining
eligible for benefits. The proposed regulations would increase
the amount from $500 to $700 per month, and may affect as many
as one-quarter of a million beneficiaries with disabilities.
I also want to note that later today I am releasing a
report on how my agency can improve its disability process
through improved decisionmaking, stronger safeguards for
program integrity, increased research into disability and, of
course, better return-to-work policies. My staff will be
available shortly to brief you on the report.
Mr. Shaw, Mr. Matsui, and Members of the Subcommittee, the
cornerstone of our return-to-work strategy at SSA remains our
commitment to the Ticket to Work Program first proposed in
1997, and again included in the fiscal year 2000 budget. For
too long our disability programs have been seen, in part, as
tickets out of the work force. It is clear that the cash
support for our disability program provides essential support
in needy times for millions of Americans. Millions of our
beneficiaries will never be able to return to work.
But the Ticket to Work proposal will help some people get
off the disability rolls and back to the work force. We believe
that the Ticket to Work proposal will result in many more
opportunities for beneficiaries to receive return-to-work
services. The proposal represents a public-private partnership
designed to provide its customers with control and flexibility
in securing rehabilitation and employment services. It is
fiscally responsible since it focuses on outcomes. Providers
would only be paid for results. It is innovative, recognizing
that the customary ways of doing business have not yielded
satisfactory results.
Under the Ticket to Work program, all disabled Social
Security and SSI beneficiaries, except those for whom medical
recovery is expected, will be eligible to participate.
Beneficiaries can use the tickets to obtain services from any
enrolled public or private provider of their choice. Vocational
rehabilitation agencies can participate on the same basis as
any other provider. The provider of services would be paid only
after the beneficiaries return to work and no longer receive a
cash benefit under the Social Security or SSI Programs.
We steadfastly believe in the value of the Ticket to Work
proposal which incorporates some of the more effective
initiatives already underway and builds upon their strengths.
For example, 5 years ago this month, SSA amended its vocational
rehabilitation regulations to broaden the providers of
rehabilitation services that are available. As of this week, we
have been able to sign contracts with 419 alternative
vocational rehabilitation services providers across the
country. We are encouraged by the results of our initiatives in
this area. We believe a fully realized Ticket to Work Program
would make a meaningful difference in helping individuals with
disabilities return to work.
The Administration is also seeking support for a
legislative proposal that provides beneficiaries who attempt to
work the assurance that cash and health benefits can be
restored in a timely fashion if they must stop working. Let me
also say, I believe the assurance of continued health benefits
is central to any initiative in helping return severely
disabled individuals to work.
When I travel around the country, people tell me it is the
fear of losing health care benefits and coverage that would
most likely dissuade people from attempting to return to work.
I want to take this opportunity to thank the Members of the
Subcommittee for their support of the Ticket over this past
year, as well as your support in passing an extension last year
of the demonstration authority of section 505(a) of the Social
Security Disability Amendments of 1980. Unfortunately, it was
not enacted and the Administration is seeking a permanent
extension of demonstration authority so that we can initiate
new projects for researching return-to-work strategies.
In conclusion, let me say that the Social Security
Administration looks forward to working with you and other
Members of the Congress to enact fiscally responsible
legislation that can help more Americans with disabilities to
successfully return to work. It is a goal that is supported not
only by our disability beneficiaries, but, I believe, by all
Americans.
Thank you. We would be happy to answer any questions that
you may have at this time.
[The prepared statement follows:]
Statement of Hon. Kenneth S. Apfel, Commissioner of Social Security,
Social Security Administration
Mr. Chairman and Members of the Subcommittee:
Thank you for inviting me here today to discuss initiatives
to assure that the Social Security Administration's (SSA)
beneficiaries with disabilities who want to work have the
opportunity to do so. I am accompanied today by Dr. Susan
Daniels, Deputy Commissioner for Disability and Income Security
Programs.
Since President Clinton took office, the American economy
has added nearly 18 million new jobs; and unemployment is the
lowest in three decades. The unemployment rate among all
working-age adults with disabilities, however, is nearly 75
percent. According to current estimates, about 16 million
working-age adults have a disability that leads to functional
limitations and 14 million working-age adults have less severe
but still significant disabilities. In addition, individuals
with disabilities also face multiple barriers to work, which
include: Lack of adequate health insurance, higher costs of
work, a disconnected employment service system, and
inaccessible or unavailable technology. Not only is it more
difficult for people with disabilities to work; when they do
work, their earnings are lower.
As a nation, we are best served when all our citizens have
the opportunity to contribute their talents, ideas, and energy
to the workforce. There are a number of initiatives underway
both at SSA and in Congress which promise to make this year one
in which we see significant progress in doing just that. Today
I will discuss the Clinton Administration's ongoing efforts to
help people with disabilities participate in the workforce.
Clinton Administration Initiatives
I would like to tell you briefly what we have done and what
we would like to do. As part of this Administration's
continuing commitment to the return to work effort, President
Clinton established the National Task Force on Employment of
Adults with Disabilities on March 13, 1998 by Executive Order
13078. This high-level task force includes the Secretaries of
Labor, Education, Veterans Affairs, Health and Human Services
(HHS), as well as the Administrator of the Small Business
Administration, the Chair of the Equal Employment Opportunity
Commission, the Chair of the National Council on Disability,
and the Commissioner of Social Security.
Briefly stated, the purpose of the task force is to create
an aggressive and coordinated national policy to bring adults
with disabilities into gainful employment at a rate that is as
close as possible to that of the general adult population. This
involves studying existing policies to determine what changes
are necessary to remove barriers to work, to develop health
insurance options, and analyze the outcomes of programs related
to employment for young people with disabilities. The final
report of the task force is due to be issued in July 2002, with
the first interim report issued last month.
As the first activity launched by the task force, Vice
President Gore announced last September that SSA, in a
collaborative effort with the Departments of Health and Human
Services, Education, and Labor, would award grants to 12 States
initially totaling over $5 million to develop innovative
projects to assist adults to reenter the workforce. It is
expected that the new approaches now getting underway in these
States will create Federal/State partnerships and serve as
models for other States to replicate. This is one of many
activities recommended by and acted upon by the Administration.
In fact, as of January, actions had been initiated on every
recommendation in the Task Force's Interim Report.
Last July, the President announced his commitment to enact
affordable, feasible legislation to help people with
disabilities maintain their health care-coverage and return to
work.
In January, I announced that SSA will fund a Disability
Research Institute to help provide policy makers with
information and research data in the disability policy area,
including ways to strengthen return-to-work policies for people
with disabilities. The Disability Research Institute should be
operational by the end of the year.
On February 12th we announced SSA's proposal to increase
the amount that adult beneficiaries with disabilities can earn
while still remaining eligible for benefits. The proposed
increase, from $500 to $700 per month, may affect as many as
250,000 Social Security beneficiaries with disabilities.
This year the President continues his commitment to
improving opportunities for disabled Americans. The President's
fiscal year (FY) 2000 budget contains a package of new
initiatives that will remove significant barriers to work for
people with disabilities. This three-part initiative, which
invests over $2 billion over five years, includes: (1) The Work
Incentives Improvement Act, which was introduced in the Senate
by Senators Jeffords, Kennedy, Roth and Moynihan and includes
the Ticket to Work proposal enacted by the House last year; (2)
a new tax credit of $1,000 annually for workers with
disabilities to help defray the monetary or in-kind costs
incurred by people with disabilities who need transportation,
special job equipment, or other assistance to return to work;
and (3) expanded access to information and communications
technologies. With these new proposals, the Administration will
have taken action on every recommendation made in the
President's Task Force on the Employment of Adults with
Disabilities.
As a further incentive to encourage beneficiaries to return
to work, the Administration has developed a legislative
proposal to assure cash and health benefits can be restored in
a timely fashion for former beneficiaries who must stop working
but continue to meet the disability standards. These
individuals, whose entitlement was terminated because of work,
could request reinstatement without filing a new application as
long as it is within 5 years of the termination, and receive
provisional benefits--cash and Medicare or Medicaid, for up to
6 months while SSA is making a determination.
Ticket to Work Provision
In 1997, the Administration first proposed its ``Ticket to
Independence,'' which was later included in the President's FY
1999 Budget. Last year, based on the Administration's proposal,
two former members of this Subcommittee, Representatives
Bunning and Kennelly, introduced the ``Ticket to Work and Self-
Sufficiency Act,'' which was passed overwhelmingly last year in
the House and is a key part of this year's Senate Work
Incentives Improvement Act. This proposal is included in the
President's FY 2000 Budget.
We believe that the Administration-proposed ``Ticket'' will
result in many more opportunities for our beneficiaries to
receive the services they need in order to work. The ``Ticket''
is a public-private partnership to give people receiving
disability payments what they want and need--the control and
flexibility to secure services tailored to their individual
requirements from their choice of providers. The ``Ticket''
maintains fiscal discipline, since providers would be paid only
for results.
The ticket would enable an SSI and SSDI beneficiary to go
to either a public or a participating private provider.
Providers who accept the ticket would have more flexibility in
selecting their preferred reimbursement.
The Ticket proposal included in the President's Budget is
based on the following fundamental principles:
Customer Choice: We believe that beneficiaries desire and
need maximum flexibility and choice in pursuing services which
will help them to become gainfully employed. Beneficiaries with
disabilities must be able to choose a participating public or
private employment or rehabilitation provider to receive the
services that they need to participate in the workforce.
Paying for Outcomes: Beneficiaries and providers alike
should focus on the goal of stable employment. A focus on
outcomes and milestones is best achieved by linking it to
financial rewards. Our goal is to reward success while using
public funds in an accountable and targeted way.
Encouraging Innovation: We believe the competitive spirit
in the proposed legislation will encourage innovations in the
private and public sectors by creating opportunities for State
agencies, local non-profit and for-profit providers, employers,
and beneficiaries.
The Administration-proposed ``Ticket'' is designed to bring
new service providers into this process. We want to develop new
and innovative ways to bring beneficiaries with disabilities to
the workforce based on actual outcomes, working with capable
and committed service providers, and providing a strong
infrastructure of information and support services. Many of
these concepts are currently underway at SSA, and I would like
to take this opportunity to discuss some of our initiatives.
SSA Initiatives
Historically, a very limited number of our approximately 10
million Social Security, Old Age, Survivors and Disability
Insurance (OASDI) and Supplemental Security Income (SSI)
disability recipients leave the disability rolls each year
because of successful rehabilitation. In fiscal year (FY) 1998,
SSA paid State VR agencies about $102 million for their
services provided to approximately
10,000 beneficiaries with disabilities who worked at least
9 months at the substantial gainful activity level. Although
this was a record year for reimbursements, I believe we can do
better.
Based on our experience and extensive collaboration with
professional groups and advocates, we have learned that many
more individuals with disabilities want to work and will do so
if they have access to the rehabilitation services they need to
reenter the workforce. We recognize the myriad of complex and
sensitive issues that must be addressed to remove barriers to
participation in the workforce.
With this in mind, we have made progress on a number of
other initiatives in the return-to-work arena which I would now
like to share with you.
Alternate Provider
It is clear that there are many providers in the private
sector who are willing to help. In March 1994, SSA amended its
VR regulations to provide more opportunities for people with
disabilities to receive the employment and rehabilitation
services they need to return to work or enter the workforce for
the first time.
These regulatory changes allowed SSA to refer Social
Security Disability Insurance (SSDI) beneficiaries and SSI
recipients who are blind or disabled to VR service providers in
the public or private sectors. The option of serving the
beneficiary continues to be offered first to the states;
however, if SSA does not receive notification that the state VR
agency has accepted a beneficiary for services by the end of
the 4th month after the month of referral, we may arrange for
an alternate provider of rehabilitation services to serve that
individual. Usually, these providers come to us from the
private sector. (Of course, this process would change with
passage of the ``Ticket.'')
To further expand the pool of alternate providers, we have
released two RFPs, the second of which will remain open
continuously. It is important to note that this is not a
competitive procurement with limits on the number of the
contracts awarded. We are interested in expanding the pool of
providers who can serve our beneficiaries and will award
contracts to all providers who qualify. Through the first week
of March, we have signed contracts with 419 VR service
providers nationally.
Some of these providers have begun to work with our
beneficiaries. We just authorized payment for the first
successful case, with several other cases soon to mature for
payment. Alternate providers, like current VR providers, are
reimbursed only after an individual has been working at the SGA
level for at least nine months.
Project RSVP
Our experience with Project RSVP (Referral System for
Vocational Rehabilitation Providers) will help us better
understand the concept of using a program manager to oversee
service providers. The objective of Project RSVP is to assure
that return to work services are more readily available to SSA-
referred individuals while improving the administration and
cost-effectiveness of the program. RSVP is a 3-year
demonstration project to test the advantages and the cost-
effectiveness of contracting out certain administrative
functions under SSA's VR referral and reimbursement programs,
and assist in managing the alternate providers. On September
27, 1997 a contract was competitively awarded to Birch & Davis
Associates, Inc. of Maryland. Birch & Davis is marketing the
project to potential VR providers. In addition, a toll-free
number to provide technical assistance and respond to questions
from beneficiaries and providers as well as the contractor's
bulletin board to refer individuals to alternate providers is
in place.
Self-Referral Initiative
With the assistance of the RSVP contractor, we are
expanding ways to provide SSDI and SSI recipients with
disabilities or blindness increased access to rehabilitation
and employment services to help them go to work. Under this
process, these individuals have the opportunity to self-
identify their interest in receiving return-to-work services by
calling a toll-free number. Our contractor will obtain
information from the caller, combine it with information
supplied by SSA and transmit a referral to the State VR agency
and/or the alternate provider(s) serving the individual's area
of residence. We believe this initiative helps to support our
intent to offer beneficiaries a more pro-active role in
assessing services at a time that is most appropriate to their
circumstances.
Through all of these provider initiatives, we have and will
continue to gain valuable insight and experience that we will
use to ensure the success of the proposed legislation. We are
encouraged by the results. We have learned that many highly
skilled, outcome-focused agencies and professionals are eager
to assist our diverse population to return to work. And, we
have learned that individualized planning and support is
essential to successful work re-entry.
Delivery of Work Incentive Information
We are working with the Virginia Commonwealth University to
develop and test a decision support software package called
WorkWorld for use in assisting consumers and service providers
in determining the effects of work on their entitlement to SSA
benefits as well as other federal/state benefits, such as food
stamps. This will allow our beneficiaries to make more informed
choices regarding employment opportunities.
We have created an attractive education kit called,
``Graduating to Independence'' (GTI), that is aimed
specifically at youth in transition from education to
employment and their families. The kit is designed for use by
educators or professional organizations to instruct young
beneficiaries and their families about SSA's work incentives.
This multimedia kit contains a videotape and several computer
disks, in addition to written materials, that combine facts
with motivational examples. We have been very aggressive in
distributing the GTI kits, sending them to school districts
across the country, and handing them out at national
conferences.
Additionally, we publish a number of other training and
public information materials on work incentives. These
materials are provided in multiple formats and have been
designed with significant consumer input to be user-friendly.
And, we have developed an Internet website which contains
information about work incentive provisions, access to our
publications, and information on our rehabilitation and
employment programs.
Finally, SSA Operations and Program Offices are working
together to assess our policies and procedures relative to our
work incentive service delivery. Through this process, we are
exploring ways we can improve the accuracy and timeliness of
work incentive information in our field offices. Beyond that,
we plan to develop methods to speed ``on-demand'' information
to customers and stakeholders.
Demonstration Authority
The demonstration authority of section 505(a) of the Social
Security Disability Amendments of 1980 expired June 10, 1996. I
want to thank the members on this Committee for their support
for an extension passed by the House last year, which
unfortunately was not enacted. In order to initiate any new
projects under the SSDI program for researching return-to-work,
the Administration seeks a permanent extension of demonstration
authority so that we can test new approaches to accomplish our
goals in this area. With this renewed authority, SSA can
develop a comprehensive strategy that integrates earlier
intervention, and identification and provides necessary
assistance in removing barriers to work for applicants and
beneficiaries.
With renewed authority we will pursue other projects that
bring us closer to our goal of supporting the active
participation of our beneficiaries with disabilities in the
workforce.
Health Care
Finally, although I would defer to HHS on the details, I
would like to mention the issue of health care coverage, which
is addressed in the President's legislative package and is part
of S. 331, ``The Work Incentives Improvement Act.'' Fear of
losing health care coverage is frequently cited as the most
common reason many disabled beneficiaries do not attempt to
return to work. These initiatives would expand Medicare and
Medicaid so that people can retain their health benefits
coverage when they return to work. Under the proposal, Medicare
coverage for disabled beneficiaries who return to work during
the next 10 years would continue so long as they remain
disabled and States would be permitted to allow disabled
individuals to buy insurance through Medicaid. In many cases,
people returning to work either work part-time and are not
eligible for employer based health insurance or work in jobs
that do not offer insurance. These health options, included in
the President's budget, are essential complements to the Ticket
to Work and other policies to remove barriers to work for
people with disabilities.
Conclusion
Mr. Chairman, I want to assure you that the Social Security
Administration stands ready, willing, and able to work with
lawmakers on both sides of the aisle to enact fiscally
responsible legislation to help thousands of Americans with
disabilities, who with appropriate services and support, can be
successful in obtaining or continuing to work. People with
disabilities can bring tremendous energy and talent to the
American workforce, but institutional barriers often limit
their ability to work. We need new and innovative approaches so
that Americans with disabilities can work. The President's
three-part budget initiative in addition to the other
initiatives I have discussed today represent not only new
approaches, but also a continued commitment to make every
effort to enrich the lives of people with disabilities and to
help those who want to work do so.
I would be happy to answer any questions.
Chairman Shaw. Mr. Matsui.
Mr. Matsui. Thank you, Mr. Chairman.
I would like to thank Dr. Daniels and you, Commissioner
Apfel. I just want to ask one question.
You reviewed the Jeffords-Kennedy legislation that passed
the Senate Finance Committee, last week, on a 16-to-2 vote, I
believe. Does the administration support that version of the
Ticket to Work proposal?
Mr. Apfel. We support the ticket proposal and we support
the health care provisions. The Administration supports both.
There are a series of minor differences that have been raised
that we will need to work through in the months ahead. We
believe all of those issues are entirely resolvable. We fully
support the ticket and the health care provisions.
Mr. Matsui. Thank you very much. And in both the health
care and the ticket provisions?
Mr. Apfel. Yes.
Chairman Shaw. If I might expand on that, the health care
provisions, are you also endorsing the revenue raisers on that,
or have you had a chance to really take a position on that?
Mr. Apfel. I think you are out of my territory on that one,
Mr. Chairman.
Chairman Shaw. For the purposes of the record, you are
speaking only on the health care provisions and you are not
commenting on the balance of it.
Mr. Apfel. I am not commenting. I don't know the answer on
the revenue proposal.
Chairman Shaw. That is certainly fair enough. Do any of the
other Members have any questions?
Mr. Hulshof.
Mr. Hulshof. To follow up on Mr. Matsui's question,
Commissioner, the Work Incentives Improvement Act--I think it's
the official term of the Kennedy-Jeffords bill that passed the
Senate Finance Committee last week--requires implementation
begin within 1 year of enactment, full implementation within
the following 3 years. As you know, the ticket bill that we
talked about, and you testified about last time, gives Social
Security Administration more of a gradual implementation. Is
there some concern, on your part, on that particular provision?
That is one of the discrepancies between the two bills. I would
like your comments.
Mr. Apfel. It is one of the discrepancies; 6 years in the
provision in last year's House bill; 3 years in the Senate. We
think we can work somewhere in the range of those two and come
up with something that would be perfectly reasonable. We don't,
at all, oppose the Senate provision of 3 years. We think we
will be making very strong progress in all areas by 3 years.
What exactly full implementation is in 3 years is for the
future. We expect 3 years would be fine. If we could work out
something a little bit clearer, that would be fine also.
Mr. Hulshof. As they say in wedding ceremonies, Speak now,
or forever hold your peace.
Mr. Apfel. Absolutely.
Mr. Hulshof. OK. I know I was expecting GAO to testify
before you, but I am glad to have you here. Let me ask you to
comment on GAO's testimony. In their testimony they talk about
the income cliff recipients face if they return to work. Under
law those who do want to go to work can make as much as $500
from work, on top of the $500 or so in benefits, but no more
than that or they lose benefits all together. Is that your
understanding as well?
Mr. Apfel. I think the cliff needs to be addressed. I think
it is one of the more important elements of the reform
legislation. We have really two answers to that. One is that I
have promulgated draft regulations to raise the $500 monthly
amount to $700, to enable more work. We expect about one-
quarter of a million individuals to benefit from that. Also, as
part of our demonstration authority, we would be able to look
at a phasedown where benefits would be reduced by $1 for every
$2 in earnings, which is closer to what happens in the SSI
Program. This is absolutely the right thing to do. We strongly
support that provision in the bill. We would like to be able to
conduct major efforts in this area to determine the cost, the
efficacy, and the importance of such an approach.
Mr. Hulshof. Thank you for your testimony.
Thanks, Mr. Chairman.
Chairman Shaw. Mr. Cardin.
Mr. Cardin. Thank you, Mr. Chairman. It is a pleasure to
have you here, Mr. Apfel.
We have been talking a great deal about the obstacles in
the way of disabled individuals being able to work. Let me talk
a little bit about the vocational rehabilitation programs
themselves. This change seems like a win-win situation. We are
allowing the person that is disabled to have a ticket to get
rehabilitation services from a much broad ranger of providers,
but the reimbursement is limited to only if the provider
succeeds in getting the person to work 9 months. The Chairman,
in announcing this hearing, points out the very low number of
people who are disabled who return successfully to the
workplace. Is there interest out there among the providers in
participating in these programs and getting people into
rehabilitation services, knowing the risk that reimbursement is
limited to whether they succeed in rehabilitating the
individual to work? Is there interest out there?
Mr. Apfel. I think there is enormous interest. We have over
400 alternate providers under our current system, so there is a
lot of interest. What we need is the financing mechanism that
the Ticket provides.
I believe that focusing on outcomes is centrally important
here. Rather than reimbursing for services only, we need to be
able to ultimately focus on outcomes. I think focusing on
outcomes almost always makes sense. In this case, paying for
outcomes is essentially important. We would like to see the
legislation have a provision included that would allow payments
or milestone payments--because I think milestone payments make
sense--only if a person has returned to work, rather than
milestone payments before the individual has returned to work.
We believe the alternate providers, the whole provider network,
the employment networks will be able to, given the extra
payment system, provide a big difference for individuals. Going
away from just funding services is centrally important.
Focusing on the outcome--the outcome is work and the payment is
tied to work--will create great incentives for our providers to
move people to work. That is one change we would like to see in
the legislation.
Mr. Cardin. Just one last question. With the State
vocational rehabilitation services, could you talk a little bit
about the capacity and why there is need to go beyond just the
traditional State programs?
Mr. Apfel. Some of our research in the past with the old
505 demonstration authority showed us that there were many
organizations, whether it be ARC, sheltered workshops, or
Goodwill Industries, that would love to be able to help our
client population return to work. The vocational rehabilitation
system has done a good job. About 10,000 people last year moved
through that system and returned to work. We provided about
$100 million last year for that activity. Broadening the
program to give individuals choice beyond the traditional State
vocational rehabilitation system creates, I think, incentives
for our vocational rehabilitation system to do better, as well
as provides other vehicles for other organizations to do more.
We don't think this is going to hurt the vocational
rehabilitation system. We think this is going to strengthen the
vocational rehabilitation system, giving vocational
rehabilitation agencies the capacity to also be involved with
the Ticket. It creates a more competitive environment with
individuals having more choice. We think that is good for our
beneficiaries. We think it is good for the service network.
Mr. Cardin. Let me just reinforce that. I think it is our
vocational rehabilitation services at the State level that want
to be able to expand and allow their clientele to be able to
have a broader base of providers. So, everything we have heard,
I think, makes a great deal of sense. I appreciate the fact
that you want it based upon outcome which is an accountability
where it should be. It seems to me we can do a lot better job
in helping people with rehabilitation services, directly, in
addition to removing the obstacles that are currently in the
way for a person to be able to be gainfully employed. You are
doing it from both points of view: Provide the services that
they need; give them the training; give them the help, and then
remove the barriers. It seems to me that it is a well-balanced
program.
Thank you, Mr. Chairman.
Chairman Shaw. Mr. Doggett.
Mr. Doggett. Thank you. Thank you for your testimony. You
mentioned that under the alternate provider program, I believe,
through last week you had signed up about 419 vocational
rehabilitation service providers. About how many beneficiaries
have actually signed up for services at this point?
Mr. Apfel. Very few. I don't have the exact number. What is
needed is the reimbursement system. We have a well of
organizations that are interested in providing services. But
without the ticket, there is very little ability to match up
individuals and need with the organization. What is needed to
see a significant increase is the ticket.
Ms. Daniels. I would like to add something to what you
said, Commissioner. Mr. Doggett, the program is fairly new and
required us to develop a whole infrastructure: A way to sign up
providers, a way to run a bulletin board. We are just really
beginning to put all of that into place. So, we only have a few
people, now, actually signed up with a particular provider. But
we expect that over time that will pick up dramatically.
Mr. Doggett. Now you consider vocational rehabilitation at
the time of the initial disability determination. Do you also,
if it is not the appropriate thing to do at that point, have a
process by which you raise it again later in the process?
Ms. Daniels. Not at this time. The current alternate
provider program must follow the current statute which says
that we have to refer individuals to vocational rehabilitation
first and wait for vocational rehabilitation to serve them or
not serve within a certain window. Then we can refer these
individuals on to other providers. We are beginning to explore
the opportunity for people to self-refer to alternate
providers, but we have to work within the constraints of the
current statutes. The ticket would give us more flexibility in
offering more opportunity to current beneficiaries who are
already on the rolls, not just people who just applied.
Mr. Doggett. As this legislation was proposed last time,
would it have the flexibility to consider vocational
rehabilitation referrals at a later point after someone had
been on the disability rolls for some time? Because I think
there is some literature that suggests that there is merit to
doing it other than just at the initial determination.
Ms. Daniels. My understanding of the ticket is that we
would be able to issue tickets to all beneficiaries, not just
to those who recently entered the rolls. So, all of our
beneficiaries, no matter how long they have been on the rolls,
could make the choice to seek services.
Mr. Doggett. I think this is evident, Commissioner, from
your initial testimony. I gather it is your view from the work
that you have done that unless we address this health insurance
issue as it is addressed in the Kennedy-Jeffords bill, we are
going to leave out tens of thousands of people out there who
would like to work, who would like to be participating in the
economy for themselves and for the benefit of the taxpayer as
well, and would like to be taxpayers. They are going to be left
out if we don't address the health insurance issue and just
leave it part way in progress in this area.
Mr. Apfel. Mr. Doggett, I totally agree. Every time I am
speaking to disablility groups, to individuals who are on our
rolls, the major issue is a fear of the unknown. That fear of
leaving the program and losing health care coverage is the
absolute biggest concern. I think it is the fundamental issue.
I would also point out that the provision that we think is
very important in the Senate bill is what is called the easy on
provision. Basically, it enables an expedited eligibility
process if someone goes off the rolls.
Right now, the decision to move to employment and go off
the rolls triggers, under current law, the need to reapply all
over again. That provides enormous disincentives for moving
into work. So, we need a system, and again the Senate bill does
address this, that enables an easy on. An individual who leaves
our rolls through work can come back on automatically and then,
within 6 months, we would conduct a disability review to
determine whether there is still a disabling condition. That
means the individual immediately has access to health care, and
is immediately able to come back on the rolls. That eliminates
both the major barriers of access to health care as well as
concern that you are never going to get back on the rolls.
Ultimately, the notion of health care coverage is central to
our future successful efforts in this area.
Mr. Doggett. Thank you. Thank you, Mr. Chairman.
Chairman Shaw. Mr. Portman.
Mr. Portman. Thank you, Mr. Chairman. I commend you for
having the hearing and for doing all you can to move this
legislation forward this year--kind of unfinished business from
last go around.
I have found this morning just listening and reading this
testimony, I have been around here too long already. I feel
like I am still a freshman, but I guess I have been here a few
years, and, as the archivist of the Subcommittee, I have to
make the comment that I worked with then-Chairman Bunning and
Mrs. Kennelly, the Ranking Member on this starting in 1997,
and, although I am delighted that the Administration has this
in their proposals, I see here that it was based on the
Administration's proposal. They actually came up with that
initially out of this Subcommittee, and I think it was creative
work, and I think that it deserves to be credited to the former
Chairman and Ranking Member. So, just that quick comment.
I really appreciated the testimony earlier, also, from Ms.
Johnson and Mr. Ramstad and the commitment that I am hearing on
both sides of the aisles in wanting to move this forward this
year with the additional Medicare and Medicaid provisions to be
sure that health is covered.
I have two quick questions, if I might. One is this notion
that we were hearing last year from the State folks which we
need to be sure that SSA is encouraging work at the earliest
opportunity, and that there is early intervention. We heard
this from the State administrators, the vocational
rehabilitation people, and my question to you is, are your
efforts successful? Is SSA promoting employment possibilities
at the earliest possible point? Initial disability
determination, for instance--and is that working well for you?
Mr. Apfel. It is not working well for us yet. But we
believe it is the ticket that will help us to be able to do
that.
There is another thing that would help us, too, which this
Subcommittee and this Committee has helped us do, which is to
extend our demonstration authority which we would like to have
extended on a permanent basis----
Mr. Portman. In a pilot program----
Mr. Apfel. One of the things that we would like to test is
whether for someone, even before getting on the disability
rolls there is a way to do an intervention at the point before
benefits start. We would need our demonstration authority to
test that. It is one of the reasons why we would like to have
that demonstration authority.
But, ultimately, the goal of the ticket, and of our
demonstration authority, is to test ways to intervene earlier
and earlier.
Mr. Portman. Another good reason to get this done this year
and to include that authority.
The USA accounts that the President has proposed in the
State of the Union, and we haven't seen specifics of yet, might
effect individuals with disabilities, and I wanted to ask you
about that. Do you know whether folks would be able to make
withdrawals from these USA accounts if they became disabled?
Mr. Apfel. As you point out, Mr. Portman, the details on
the USA accounts are not yet available, but that is also the
Treasury Department's issue as opposed to the Social Security
Administration. So, I don't have an answer to that question.
Mr. Portman. Would you support that?
Mr. Apfel. I think that is a tough issue. It is a tough
issue on a couple of different fronts.
One, if we are creating retirement savings for the future
as a supplement to a major base of adequate support, then
having the ability to utilize supplemental resourcese while
disabled potentially could be beneficial. But, depending on the
adequacy of the retirement plan out there, if the individual
account becomes a large part of what a person has for
retirement, and if that money gets consumed before getting to
retirement age, then that is putting a person very much at
risk.
So, I really am of two minds as to whether that retirement
account should be available at disability, and there are----
Mr. Portman. The other question is, what effect would that
have if that were available on the likelihood of disability
claims being increased or decreased into the future? And I just
think that it is something to think about as you are putting
together this proposal. I assume the Treasury Department is
coming to you for advice on this since it is related to both of
your programs, disability and retirement.
Mr. Apfel. They are, sir, and I will take that under
advisement.
Mr. Portman. Both of the hats that you wear.
Thank you, Mr. Chairman.
Mr. Apfel. Mr. Portman, if I could add for the record, that
the Administration first proposed the ticket in 1997, and had
been working very closely with the Chairman and Mrs. Kennelly.
Mr. Portman. I'm told that the Bunning bill was September
1996. I hate to be the historian around here. I've only been
here since 1993.
Chairman Shaw. But, also, in order to clarify the record,
too, the Ranking Member there was Andy Jacobs who was a
cosponsor.
Mr. Portman. That is correct. Andy Jacobs was the first
Ranking Member.
Chairman Shaw. We will all leave Congress someday, and we
would like to be remembered.
Mr. Portman. There you go. I am doing it for the benefit of
all of us.
Mr. Apfel. Well, it is my hope and expectation that we will
all be remembered in a very positive light when this
legislation is adopted. And, if we look back in a bipartisan
fashion, the Administration and Congress will all realize that
we made a major contribution.
Chairman Shaw. Well, as President Reagan said, there is no
end to what you can accomplish if you don't worry about who
gets credit for it. And there is plenty of credit to go around
on this. This is a great piece of legislation, and hopefully,
we can get it going this time.
I want to thank this panel. I don't believe there are any
more questions at this time.
Mr. Apfel. If I could, Mr. Chairman, add----
Mr. Portman. Yes, please.
Mr. Apfel [continuing]. A couple of other issues in the
Senate bill I would like to mention. I think that it is
important to establish a mechanism for dispute resolution, as
the Senate bill does, and to fund the protection and advocacy
system. We ought to be able to figure out a way to work
together to determine how to do that.
Also, the Senate bill has a 5-year sunset on the overall
bill which I think is going to create some disincentives for
the providers to really get behind this legislation. They may
be concerned that capital improvements potentially could go
away in 5 years. I think that the sunset is a mistake. I think
that we clearly will need to do research to determine the
efficacy of the program, but whether creating a 5-year sunset
would potentially lead to inhibitions to fully develop systems
would be a good question to ask providers.
Another issue would be the advisory panel. Last year's bill
had some fairly prescriptive advisory panel language where the
advisory panel would actually be involved in piloting sites,
determining sites, and so forth. Our recommendation is to be a
little less prescriptive in that area so that the overall
guidance would be provided by an advisory board, which I think
is good. Having the advisory board involved in the actual site
selection and other operational issues really is what my job is
and Susan's job, and I would hope we would have a little more
flexibility in that area.
The other big fundamental difference between last year's
bill and this year's bill, as Mr. Matsui, Mr. Cardin, and Mr.
Doggett pointed out, is the health care provision is centrally
important. As we heard from the first panel--the ability of
disabled individuals to be able to return to work without that
health care provision would be severely limited. It is a
fundamental issue for people with disabilities. I don't know if
Susan wanted to add anything.
Ms. Daniels. I just want to add, personally, that I was a
Social Security beneficiary myself, and the program was
enormously important to me and allowed me to finish my
education and provided me with needed support. But, for so many
people it has become a trap, especially when they cannot
replace the health care. I look to the future myself and hope
that I will not be in a difficult position to secure health
care for myself. I empathize a lot with the problem. I hope we
all think that each one of us could be vulnerable to the very
same problem, and that we empathize with that situation.
Thank you very much.
Chairman Shaw. Thank you, Dr. Daniels, and I thank both of
you for being with us this morning.
Mr. Apfel. We are honored to be here.
Chairman Shaw. Yes, sir. And congratulations on getting out
of here in record time. [Laughter.]
Mr. Apfel. In 2 hours?
Chairman Shaw. After your last stay.
Mr. Apfel. That was 3 hours. [Laughter.]
Chairman Shaw. All right. Our next witness is Cynthia
Fagnoni who is the Director of the Income Security Issues,
Health, Education, and Human Services Division of the U.S.
General Accounting Office. We have your full statement which
will be made a part of the record, and we invite you to proceed
as you see fit. Welcome.
STATEMENT OF CYNTHIA M. FAGNONI, DIRECTOR, INCOME SECURITY
ISSUES, HEALTH, EDUCATION, AND HUMAN SERVICES DIVISION, U.S.
GENERAL ACCOUNTING OFFICE; ACCOMPANIED BY BRETT FALLAVOLLITA,
SENIOR EVALUATOR
Ms. Fagnoni. Thank you, Mr. Chairman.
I have with me today Brett Fallavollita, who is a senior
evaluator at GAO who has done quite a bit of work on the
disability-return-to-work issues.
Mr. Chairman and Members of the Subcommittee, I am pleased
to be here today to testify on factors affecting the return to
work of beneficiaries in the Social Security Disability
Program. Over the years, the Congress has enacted various work
incentive provisions designed to safeguard beneficiaries' cash
and medical benefits to encourage them to test their ability to
work. Despite these statutory provisions, as well as medical
and technological changes that have afforded greater potential
for some beneficiaries to work, not more than 1 of every 500
DI, disability insurance, beneficiaries has left the rolls by
returning to work.
To help improve return-to-work outcomes, Members of
Congress and advocates for people with disabilities have
recently proposed various reforms such as allowing working
beneficiaries to keep more of their earnings, safeguarding
medical coverage, and enhancing vocation rehabilitation.
Today, I would like to focus my remarks on three issues:
Structural and operational weaknesses in the current DI and SSI
Programs that impede return to work; factors that working
beneficiaries believe are helpful in becoming and staying
employed; and tradeoffs and challenges that exist in improving
work incentives. My testimony is based on a series of GAO
reports on Social Security Disability Program design and
implementation, as well as a report on factors facilitating
work for a group of DI beneficiaries.
Regarding the first issue, program weaknesses that impede
return to work, we have found that the DI and SSI Programs'
design and operational shortcomings do not encourage
beneficiaries to maximize their work potential. Program
eligibility and requirements and a disability application
process encourage people to focus on their inabilities, not
their abilities. Because the disability decision results in
either a full award or a full denial of benefits, applicants
have a strong incentive to establish their inability to work
and, thus, qualify for benefits.
Work incentive provisions that are complex, difficult to
understand, and poorly implemented further impede return-to-
work efforts. Because SSA has not promoted them extensively,
few beneficiaries have been aware that work incentives exist,
and, despite providing some financial protection for those who
want to work, work incentives do not appear to be sufficient to
overcome the prospect of a drop in income for those who accept
low-income employment.
Let me now describe the factors that disabled beneficiaries
themselves have told us help them return to work. The most
frequently cited factors were health interventions and
encouragement from friends and family. Health interventions,
such as medical procedures, medications, physical therapy, and
psychotherapy helped beneficiaries by stabilizing their
conditions and helping them function better.
These health interventions were viewed as important
precursors to work, as well as important to maintaining ongoing
work efforts. For example, one person we interviewed who had
cancer and was working as a financial consultant told us that
all of his treatments, chemotherapy, radiation, and eye
surgery, helped him get well and enabled him to work. Another
individual with bipolar disorder who is an administrative
support worker told us that a combination of medications and
therapy helped her function in a work environment.
Beneficiaries also told us that they received encouragement
from family, friends, health professionals, supervisors, and
coworkers. A beneficiaries who is HIV positive told us that his
doctor is very supportive, going as far as writing a letter to
his employer explaining his condition and capabilities. A
beneficiary with epilepsy noted that his supervisor checks from
time to time to make sure that everything is OK and that he is
not burning out, even suggesting that he take days off.
Now, let me turn to our third point: tradeoffs and
challenges in improving work incentives. Changing work
incentives may or may not increase the work effort in current
beneficiaries depending on their behavior and response to the
type of change and their capacity for work and earnings. For
example, allowing people to keep more of their earnings would
make the program more generous and could cause people who are
currently not in the program to enter it. Also, improving the
work incentives could keep some in the program who might
otherwise have left. Allowing people to keep more of their
earnings would also mean they would not leave the program, as
they once did, for a given level of earnings. Such a decrease
in this exit rate could reduce overall work effort because
people on the disability rolls tend to work less than people
off the rolls.
The cost of proposed reforms is difficult to estimate with
certainty because of the lack of information on such entry and
exit efforts.
Mr. Chairman, this concludes my oral statement, my oral
remarks. Of course, we have submitted a full statement for the
record, and I would be happy to answer any questions that you
or the Members might have.
[The prepared statement and attachment follow:]
Statement of Cynthia M. Fagnoni, Director, Income Security Issues,
Health, Education, and Human Services Division, U.S. General Accounting
Office
Mr. Chairman and Members of the Subcommittee:
Thank you for inviting me to testify on return-to-work
issues facing the Disability Insurance (DI) and Supplemental
Security Income (SSI) programs. The Social Security
Administration (SSA) pays out about $5.1 billion in cash
payments to DI and SSI beneficiaries each month. While
providing a measure of income security, these payments, for the
most part, do little to enhance work capacities and promote
beneficiaries' economic independence. Yet, as embodied in the
Americans With Disabilities Act (ADA), attitudes have shifted
toward goals of economic self-sufficiency and the right of
people with disabilities to full participation in society.
Moreover, medical advances and new technologies now provide
more opportunities to work than ever before for people with
disabilities.
The DI and SSI programs, however, have not kept pace with
the trend toward returning people with disabilities to the work
place. Fewer than 1 percent of DI beneficiaries, and few SSI
beneficiaries, leave the rolls to return to work each year.
Yet, even relatively small improvements in return-to-work
outcomes offer the potential for significant savings in program
outlays. For example, if an additional 1 percent of the
working-age SSI and DI beneficiary population was to leave
SSA's disability rolls by returning to work, lifetime cash
benefits would be reduced by an estimated $3 billion.\1\ To
help improve return-to-work outcomes, Members of the Congress
and advocates for people with disabilities have recently
proposed various reforms--such as allowing working
beneficiaries to keep more of their earnings, safeguarding
medical coverage, and enhancing vocational rehabilitation.
---------------------------------------------------------------------------
\1\ The estimated reductions are based on data provided by SSA's
actuarial staff and represent the discounted present value of the cash
benefits that would have been paid over a lifetime if the individual
had not left the disability rolls by returning to work. These
reductions, however, would be offset, at least in part, by
rehabilitation and other costs that might be necessary to return a
person with disabilities to work.
---------------------------------------------------------------------------
Today, I would like to focus my remarks on (1) structural
and operational weaknesses in the current DI and SSI programs
that impede return to work, (2) factors that working
beneficiaries believe are helpful in becoming and staying
employed, and (3) challenges that exist in improving program
incentives to work. My testimony is based on a series of GAO
reports on Social Security disability program design and
implementation as well as a report on factors facilitating work
for a group of DI beneficiaries. (A list of related GAO
products appears at the end of this statement.)
In summary, program eligibility requirements and the
application process encourage people to focus on their
inabilities, not their abilities. Moreover, work incentives
offered by the programs do not overcome the risk of returning
to work for many beneficiaries, and the complexities of work
incentives can make them difficult to understand and
challenging to implement. Also, there is little encouragement
to use rehabilitation services, which are relatively
inaccessible to beneficiaries seeking them. Some DI
beneficiaries who work despite these program weaknesses cited
improved ability to function in the work place, resulting from
successful health care, and encouragement from family, friends,
health care providers, and coworkers as the most important
factors helping them find and maintain work. Finally, our
analysis of some of the proposed changes to work incentives--
such as gradually reducing the DI cash benefit level as
earnings increase--indicates that there will be difficult
trade-offs in any attempt to change work incentives. Moreover,
determining the effectiveness of any of these proposed policies
in increasing work effort and reducing caseloads would require
that major gaps in existing research be filled.
Background
DI and SSI--the two largest federal programs providing cash
to people with disabilities--grew rapidly between 1988 and
1998, with the size of the working-age beneficiary population
increasing from about 4.4 million to 7.6 million. Administered
by SSA and state disability determination service (DDS)
offices, DI and SSI paid cash benefits totaling about $61.3
billion in 1998. According to the law, to be considered
disabled by either program, an adult must be unable ``to engage
in any substantial gainful activity by reason of any medically
determinable physical or mental impairment which can be
expected to result in death or has lasted or can be expected to
last for a continuous period of not less than 12 months.'' \2\
Moreover, the impairment must be of such severity that the
person not only is unable to do his or her previous work but,
considering his or her age, education, and work experience, is
unable to do any other kind of substantial work nationwide.
---------------------------------------------------------------------------
\2\ Currently, individuals with disabilities are considered to be
engaging in substantial gainful activities (SGA) if earnings exceed
$500 per month. The monthly SGA level for persons who are blind is
$1,110 per month.
---------------------------------------------------------------------------
Established in 1956, DI is an insurance program funded by
Social Security payroll taxes. The program is for workers who,
having worked long enough and recently enough to become insured
under DI, have lost their ability to work--and, hence, their
income--because of disability. In addition, Medicare coverage
is provided to DI beneficiaries after they have received cash
benefits for 24 months. About 4.7 million working-age people
(aged 18 to 64) received about $39.9 billion in DI cash
benefits in 1998.\3\
---------------------------------------------------------------------------
\3\ Included among the 4.7 million DI beneficiaries are about
720,000 beneficiaries who were dually eligible for SSI disability
benefits because of the low level of their income and resources.
---------------------------------------------------------------------------
In contrast, SSI is a means-tested income assistance
program for disabled, blind, or aged individuals regardless of
their prior participation in the labor force.\4\ Established in
1972 for individuals with low income and limited resources, SSI
is financed from general revenues. In most states, SSI
entitlement ensures an individual's eligibility for Medicaid
benefits.\5\ In 1998, about 3.6 million working-age people with
disabilities received SSI benefits; federal SSI cash benefits
paid to these and other disabled beneficiaries amounted to
$21.3 billion.\6\
---------------------------------------------------------------------------
\4\ References to the SSI program throughout the remainder of this
testimony address blind or disabled, not aged, recipients.
\5\ States can opt to use the financial standards and definitions
for disability they had in effect in January 1972 to determine Medicaid
eligibility for their aged, blind, and disabled residents, rather than
making all SSI recipients automatically eligible for Medicaid. Often,
the Medicaid financial standards used by states are more restrictive
than SSI's.
\6\ This amount represents payments to all adult SSI blind and
disabled beneficiaries, including those age 65 and over.
---------------------------------------------------------------------------
The Social Security Act states that people applying for
disability benefits should be promptly referred to state
vocational rehabilitation (VR) agencies for services in order
to maximize the number of such individuals who can return to
productive activity.\7\ Furthermore, to reduce the risk a
beneficiary faces in trading guaranteed monthly income and
subsidized health coverage for the uncertainties of employment,
the Congress has established various work incentives intended
to safeguard cash and health benefits while a beneficiary tries
to return to work.
---------------------------------------------------------------------------
\7\ State VR agencies also provide rehabilitation services to
people not involved with the DI and SSI programs.
---------------------------------------------------------------------------
Structural and Operational Weaknesses in DI and SSI Impede Return to
Work
In a series of reports, we have discussed how DI and SSI
design and operational weaknesses do not encourage
beneficiaries to maximize their work potential.\8\ The
cumulative impact of these weaknesses, summarized in table 1,
is to understate beneficiaries' work capacity and impede
efforts to improve return-to-work outcomes.
---------------------------------------------------------------------------
\8\ SSA Disability: Program Redesign Necessary to Encourage Return
to Work (GAO/HEHS-96-62, Apr. 24, 1996); SSA Disability: Return-to-Work
Strategies From Other Systems May Improve Federal Programs (GAO/HEHS-
96-133, July 11, 1996); and Social Security: Disability Programs Lag in
Promoting Return to Work (GAO/HEHS-97-46, Mar. 17, 1997).
Table 1. Summary of Program Design and Implementation Weaknesses
------------------------------------------------------------------------
Weakness Description
------------------------------------------------------------------------
Work capacity of DI and SSI beneficiaries Medical conditions alone are
may be understated.. generally a poor predictor
of work incapacity. While
impairment has some
influence over capacity to
work, other factors--
vocational, psychological,
economic, environmental,
motivational--are often
considered to be more
important determinants of
work capacity.
Disability determination process may ``All-or-nothing'' decision
encourage work incapacity.. gives incentive to promote
inabilities and minimize
abilities. Lengthy
application process to
prove one's disability can
also erode motivation and
ability to return to work.
Benefit structure can provide disincentive The prospect of losing cash
to low-wage work.. and health benefits can
reduce motivation to work
and receptivity to VR and
work incentives, especially
when low-wage jobs are the
likely outcome. People with
disabilities may have less
time available for work
than others, further
influencing a decision to
opt for benefits over work.
Work incentives are ineffective in Few beneficiaries are aware
motivating people to work.. that work incentives exist.
Regardless, work incentives
are complex, difficult to
understand, and poorly
implemented, and they do
not overcome the prospect
of a drop in income for
those who accept low-wage
employment.
VR plays limited role in disability Studies have questioned the
programs.. effectiveness of state VR
agency services. Access to
VR services through DDS
referrals is limited.
Restrictive state VR
policies limit categories
of people referred by DDS
offices, the referral
process is not monitored
(reflecting its low
priority and removing
incentive to spend time on
referrals), and the success-
based VR reimbursement
system is ineffective in
motivating VR agencies to
accept beneficiaries as
clients. In addition,
applicants and
beneficiaries are generally
uninformed about and not
encouraged to seek VR,
affording little
opportunity to opt for
rehabilitation and
employment.
------------------------------------------------------------------------
In recent years, SSA has made efforts to better promote
return to work. Also, the Congress and others have proposed
various alternatives at program reform.
Work Capacity of DI and SSI Beneficiaries May Be Understated
The Social Security Act requires that the assessment of an
applicant's work incapacity be based on the presence of
medically determinable physical and mental impairments. SSA
maintains a listing of impairments for medical conditions that
are, according to SSA, ordinarily severe enough in themselves
to prevent an individual from engaging in any gainful activity.
About 50 percent of new awardees are eligible for disability
because their impairment is listed or meets the severity of a
listed impairment.\9\ But findings of studies we reviewed
generally agree that medical conditions are a poor predictor of
work incapacity.\10\ As a result, the work capacity of DI and
SSI beneficiaries may be understated.
---------------------------------------------------------------------------
\9\ This percent is based on DI and SSI decisions made at the
initial level of determination by the DDS offices and subsequent
decisions made by administrative law judges on appealed cases from
September 1992 through April 1995.
\10\ For example, S. O. Okpaku and others, ``Disability
Determinations for Adults With Mental Disorders: Social Security
Administration vs Independent Judgments,'' American Journal of Public
Health, Vol. 84, No. 11 (Nov. 1994), pp. 1791-95; and H. P. Brehm and
T. V. Rush, ``Disability Analysis of Longitudinal Health Data: Policy
Implications for Social Security Disability Insurance,'' Journal of
Aging Studies, Vol. 2, No. 4 (1988), pp. 379-99.
---------------------------------------------------------------------------
While disability decisions may be more clear-cut in the
case of people whose impairments inherently and permanently
prevent them from working, disability determinations may be
much more difficult for those who may have a reasonable chance
of work if they receive appropriate assistance and support.
Nonmedical factors may play a crucial role in determining the
extent to which people in this latter group can work.
Program Weaknesses Impede Efforts to Improve Return-to-Work Outcomes
Because a disability determination results in either a full
award of benefits or a denial of benefits, applicants have a
strong incentive to overstate their disabilities to establish
their inability to work and thus qualify for benefits.
Conversely, applicants have a disincentive to demonstrate any
capacity to work because doing so may disqualify them for
benefits. Furthermore, many believe that the documentation
involved in establishing one's disability can create a
``disability mind-set,'' which weakens motivation to work.
Compounding this negative process, the length of time required
to determine eligibility can erode skills, abilities, and
habits necessary to work.
In addition, VR has played a limited role in the DI and SSI
programs, in part because of restrictive state VR policies and
limits on alternatives to providers in the state VR system.
Beneficiaries have generally been uninformed about the
availability of VR services and have been given little
encouragement to seek them. Moreover, the effectiveness of
state VR services in securing long-term financial gains has
been mixed, at best.
Work incentive provisions that are complex, difficult to
understand, and poorly implemented further impede return-to-
work efforts. Because SSA has not promoted them extensively,
few beneficiaries have been aware that work incentives exist.
Despite providing some financial protection for those who want
to work, work incentives do not appear to be sufficient to
overcome the prospect of a drop in income for those who accept
low-wage employment.
For example, DI work incentives provide for a trial work
period in which a beneficiary may earn any amount for 9 months
(which need not be consecutive) within a 60-month period and
still receive full cash and health benefits. At the end of the
trial work period, if a beneficiary's countable earnings are
more than $500 a month, cash benefits continue for an
additional 3-month grace period and then stop, causing a
precipitous drop in monthly income from full benefits to no
cash benefits.\11\ SSA researchers have noted that such a drop
in income is a considerable disincentive to finishing the trial
work period as well as to beginning work. It may be more
financially advantageous for beneficiaries--especially those
with low earnings--to continue to receive disability payments
by not working or by limiting earnings than to earn more than
$500 a month in countable income.
---------------------------------------------------------------------------
\11\ For 36 months after the trial work period ends, cash benefits
will be reinstated for any month in which the person does not earn more
than $500 a month in countable income; this is referred to as the
extended period of eligibility.
---------------------------------------------------------------------------
Numerous Program Reforms Have Been Proposed
Our work has called for SSA to develop a comprehensive,
integrated return-to-work strategy that includes intervening
earlier, providing return-to-work supports and assistance, and
structuring benefits to encourage work. SSA has agreed that
there are compelling reasons to try new return-to-work
approaches.
Recently, SSA told us that it has (1) contracted with over
400 public and private VR providers, (2) trained state VR
agency staff on SSA work incentives and reimbursement
procedures, and (3) positioned itself to contract with state
agencies to research ways to improve service integration for
beneficiaries attempting to return work. In addition, SSA has
proposed to demonstrate the effectiveness of vouchers (or
``tickets'') for beneficiaries to obtain VR services from
public or private providers reimbursed on an outcome basis. SSA
has also proposed increasing the substantial gainful activities
level for beneficiaries, thereby allowing them to have a higher
earned income before leaving the disability rolls.
In addition to SSA's proposed reforms, the Congress and
advocates for people with disabilities have offered various
reforms. Such reforms have proposed allowing working
beneficiaries to keep more of their earnings, safeguarding
medical coverage, and using tickets to enhance vocational
rehabilitation.
Multiple Factors Assist Beneficiaries' Movement Into the Workforce
To understand how DI beneficiaries overcome the challenges
and disincentives to work, we conducted survey interviews with
69 people who were receiving DI benefits and working in one of
three metropolitan areas.\12\ The working DI beneficiaries we
interviewed cited a number of factors as helpful to becoming
employed (see table 2). The two most frequently reported
factors--health interventions and encouragement to work by
family members and others--appear to have been the most
critical in helping beneficiaries become employed. First,
health interventions--such as medical procedures, medications,
physical therapy, and psychotherapy--reportedly helped
beneficiaries by stabilizing their conditions and,
consequently, improving functioning. Not only were health
interventions perceived as important precursors to work, they
were also seen as important to maintaining ongoing work
attempts. Encouragement to work from family, friends, health
professionals, and coworkers was also critical, according to
respondents.
---------------------------------------------------------------------------
\12\ Our findings from these interviews are reported in Social
Security Disability Insurance: Multiple Factors Affect Beneficiaries'
Ability to Return to Work (GAO/HEHS-98-39, Jan. 12, 1998). Because
neither the metropolitan areas selected nor the people we interviewed
constituted a random sample, our results are not generalizable to the
entire population of working DI beneficiaries.
---------------------------------------------------------------------------
Although other factors were reported less frequently, any
single factor can be the key determinant in an individual's
becoming employed. These factors include a flexible schedule
(particularly to have time off to visit a health professional),
job-related training and vocational rehabilitation services
(especially job search and on-the-job training), the trial work
period and extended period of eligibility, and high self-
motivation. To a somewhat lesser extent, religious faith, job
coaches, assistive devices and equipment, and ADA provisions
were useful. In general, similar proportions of respondents
with physical impairments and those with psychiatric
impairments cited these factors as helpful to being employed.
However, people with physical impairments found coworkers and
the trial work period more helpful than did those with
psychiatric impairments.
Table 2. Factors That Facilitated Working DI Beneficiaries' Employment,
by Frequency of Reporting
------------------------------------------------------------------------
Factor Description Significance
------------------------------------------------------------------------
Primary:
Health intervention............. Health Early return to
interventions work without
provided medical health
stabilization and intervention may
improved be difficult for
functioning. some
Encouragement................... Family, friends, Desire to work can
coworkers, and be influenced
health positively, and
professionals possibly
provided negatively, by
encouragement and social forces
emotional support.
Secondary:
Flexible work schedule.......... Number of hours Typical 5-day, 40-
and work schedule hour work week
were responsive may be
to respondents' unrealistic for
needs and some
capabilities. beneficiaries
Job-related training and Training and This factor has
services. services were implications for
directly related retaining workers
to finding and in the labor
performing a job. force who
otherwise might
apply for Social
Security
disability
benefits
Trial work period/extended SSA provisions Trial work period
period of eligibility. allowed reported as
beneficiaries to useful, although
test their work some felt that 9
capacity without months is too
jeopardizing short and $200
benefits and to earnings level is
ease their too low
transition to the
workforce.
High self-motivation............ Respondents Motivation to work
strongly wanted may develop over
or needed to time, as about 3
work, especially in 10 did not
compared with expect to work
disabled peers upon program
without jobs. entry
Tertiary:
Religious faith................. Religious faith Interview did not
reported as specifically
providing source address religious
of strength and faith; it may be
guidance. more important
than reported
Job coaches..................... On-site job coach This factor has
or similar implications for
specialist taught retaining workers
work skills. in the labor
force who
otherwise might
apply for Social
Security
disability
benefits
Assistive devices and equipment. Among most Usefulness of
frequently assistive devices
mentioned items and equipment is
were back and leg largely limited
braces, canes and to people with
crutches, adapted physical
computers and impairments
keyboards, and
wheelchairs.
Provisions provided by ADA...... Respondents About one-third
reported that ADA were aware of
provided rights, ADA, and over one-
accommodations, half of those who
and hiring were aware said
opportunities. ADA was not
helpful
------------------------------------------------------------------------
Note: Factors are categorized into three groups--primary, secondary, and
tertiary--on the basis of how often all respondents reported them. In
some instances, we combined related areas of support and services in
developing the factors and assigning relative importance.
Beneficiaries' comments illuminate the importance of these
factors in helping them return to work. For example, Carol, an
administrative support worker in her thirties with a manic
depressive disorder, pointed to encouragement and medical
intervention as factors that enabled her to continue working:
My family members . . . encouraged me to go to work and not
rely on disability income. They were helpful to me in assessing
the merits and benefits of potential job offers. . . . I am
using a combination of Prozac and lithium medications to
control my condition and [enable] me to work regularly where I
don't use my sick days. Therapy with my counselor for over 4
years has really allowed me to work and function in a work
environment.
Similarly, Mark, a maintenance worker in his thirties with
epilepsy, said
Medications for [my] epilepsy help keep [my] condition under
control, which minimizes seizures and the risk of getting
fired. . . . [My supervisor] checks from time to time to make
sure everything is okay [and] even suggests taking days off.
Stephen, a bartender in his thirties with HIV, identified
various individuals in the community who support him:
[My] infectious disease doctor [is] encouraging and is very
supportive. He wrote a letter to [my] employer explaining [my]
condition and my capabilities. [My] parents are very supportive
[and my] medications have made me physically able to work.
[Coworkers are] providing emotional support.
Yvonne, a cashier in her forties with an anxiety disorder,
found--in addition to medical intervention and community
support--ADA helpful:
Psychotherapy and group therapy [have] been helpful. Also,
medication has been helpful. . . . My psychotherapist has gone
out of his way to help me. I can call him at any time. The
pastor of my church has also counseled me. At the college I
attended, a director of the disabled talks to my professors and
tells them about my condition so that they can take this into
account when assigning work and evaluating my performance. . .
. ADA has helped because I believe that [my employer] would not
have hired me because of my problems.
Longer Term Work Decisions Were Also Affected by Health Concerns
Not surprisingly, personal health appears to be an overriding issue
as beneficiaries consider their future status in the DI program and at
the work site. Among the 44 respondents without employer-based health
insurance coverage, 29 plan to stay on the DI rolls into the
foreseeable future or are unsure of their future plans. In contrast, 15
of 24 respondents with such coverage plan to exit the rolls. Moreover,
when asked if anything would make it harder to work, about one-half of
the 46 respondents who responded affirmatively said that poorer health
would inhibit employment. Similarly, some said that improved health
would facilitate work. We found little difference in future work and
program plans between people with physical and psychiatric impairments.
Work Incentives and SSA Staff Played Limited Role
DI program incentives for reducing risks associated with attempting
work appear to have played a limited role in beneficiaries' efforts to
become employed. Although the trial work period was considered helpful
by 31 respondents, others indicated it had shortcomings or were unaware
that it existed. For instance, several respondents indicated the amount
signifying a ``successful'' month of earnings ($200) was too low, an
all-or-nothing cutoff of benefits after 9 months was too abrupt, and
having only one trial period did not recognize the cyclical nature of
some disabilities.\13\ Respondents' mixed views of the design of the
trial work period suggest that while they value a transitional period
between receiving full cash benefits and losing some benefits because
of work, they might be more satisfied with a different design. Finally,
over one-fifth were unaware of the trial work period and therefore may
have unknowingly been at risk of losing cash benefits.
---------------------------------------------------------------------------
\13\ Similarly, some beneficiaries noted that the $500 monthly
earnings threshold used in the formula to determine if a person with a
disability other than blindness is working at a gainful activity level
(and therefore no longer eligible for benefits) is set too low.
---------------------------------------------------------------------------
Moreover, many respondents were unaware of other work incentives as
well. Consequently, fewer respondents reported these incentives as
helpful than might have had they been better informed. For example, 41
respondents were unaware of the provision that allows beneficiaries to
deduct impairment-related work expenses from the amount SSA considers
the threshold for determining continued eligibility.\14\ Using the
deduction could make it easier for a beneficiary to continue working
while on the rolls without losing benefits. Moreover, 42 respondents
were unaware of the option to purchase Medicare upon leaving the rolls.
As a result, some of these beneficiaries may have decided to limit
their employment for fear of losing health care coverage, while others
who planned to leave the rolls may have thought they were putting
themselves at risk of foregoing health care coverage entirely upon
program termination.
---------------------------------------------------------------------------
\14\ Examples of expenses likely to be deductible include attendant
care services performed in the work setting, structural modifications
to a vehicle used to drive to work, wheelchairs, and regularly
prescribed medical treatment or therapy that is necessary to control a
disabling condition.
---------------------------------------------------------------------------
Generally, respondents told us that SSA staff with whom they
interacted provided neither much help in nor were much of a hindrance
to return-to-work efforts. Fifty-nine respondents answered ``no'' when
asked if people from SSA assisted them in becoming employed. However,
52 of the 69 respondents told us that they did not have experiences
with SSA that made it difficult to become employed. For the 17 people
reporting difficulties, the most common examples cited were the limited
assistance offered and poor information provided by SSA.
Difficult Challenges and Trade-Offs Involved in Improving Work
Incentives
Because the current work incentives have either impeded or
played a limited role in helping beneficiaries return to work,
the Congress and others have recognized the need to reform the
current work incentives, particularly those in the DI program.
However, our work has found that changing the work incentives
involves difficult challenges and tradeoffs. Because of the
complex interactions between earnings and disability benefits,
some types of work incentive changes may help some
beneficiaries more than others. Moreover, tradeoffs exist
between trying to increase the work effort of beneficiaries
without decreasing the work effort of people with disabilities
who are not currently receiving disability benefits.
Two illustrations using data from Virginia Commonwealth
University's Employment Support Institute underscore the
complex interactions between earnings and benefits.\15\ For
example, figure 1 shows that under current law, a DI
beneficiary's net income may drop at two points, even as gross
earnings increase. The first ``income cliff'' occurs when a
person loses all of his or her cash benefits because countable
earnings are above $500 a month and the trial work and grace
periods have ended (which, in figure 1, occurs when the
individual earns $750 a month). A second income cliff may occur
if Medicare is purchased when premium-free Medicare benefits
are exhausted (which, in figure 1, occurs when the individual
earns $1,500 a month).
---------------------------------------------------------------------------
\15\ The Employment Support Institute at Virginia Commonwealth
University developed WorkWORLD software, which allows individuals to
compare what happens to their net income (defined as an individual's
gross income plus noncash subsidies minus taxes and medical and work
expenses) as earnings levels change under current law and when work
incentives are changed.
---------------------------------------------------------------------------
Figure 1 also illustrates what happens to net income when a
tax credit is combined with a Medicare buy-in that adjusts
premiums to earnings.\16\ In this particular example--although
the tax credit may cushion the impact of the drop in net income
caused by loss of benefits--it does not eliminate the drop
entirely. However, as figure 2 shows, the income cliff is
eliminated when benefits are reduced $1 for every $2 of
earnings above the substantial gainful activity level.
---------------------------------------------------------------------------
\16\ The tax credit used in this example assumes that the credit is
refundable and supplements the existing Earned Income Tax Credit.
[GRAPHIC] [TIFF OMITTED] T6970.001
[GRAPHIC] [TIFF OMITTED] T6970.002
In addition, changing work incentives may or may not
increase the work effort of current beneficiaries, depending on
their behavior in response to the type of change and their
capacity for work and earnings. But even if changes in work
incentives increase the work effort of the current
beneficiaries, a net increase in work effort may not be
achieved. This point is emphasized by economists who have noted
that improving work incentives may make the program attractive
to those not currently in it.\17\ Allowing people to keep more
of their earnings would make the program more generous and
could cause people who are currently not in the program to
enter it. Such an effect could reduce overall work effort
because those individuals not in the program could reduce their
work effort to become eligible for benefits. Moreover,
improving work incentives by allowing people to keep more of
their earnings could keep some in the program who might
otherwise have left. Decreases in the exit rate could reduce
overall work effort because people on the disability rolls tend
to work less than people off the rolls. The extent to which
increased entry occurs and decreased exit occurs will affect
how expensive these changes could be in terms of program costs.
---------------------------------------------------------------------------
\17\ See Hillary Williamson Hoynes and Robert Moffitt, ``The
Effectiveness of Financial Work Incentives in Social Security
Disability Insurance and Supplemental Security Income: Lessons From
Other Transfer Programs,'' Disability, Work, and Cash Benefits, edited
by Jerry L. Mashaw and others (Kalamazoo, Mich.: W. E. Upjohn Institute
for Employment Research, 1996), and Hillary Williamson Hoynes and
Robert Moffitt, ``Tax Rates and Work Incentives in the Social Security
Disability Insurance Program: Current Law and Alternative Reforms''
(May 1997), unpublished.
---------------------------------------------------------------------------
The costs of proposed reforms are difficult to estimate
with certainty because of the lack of information on entry and
exit effects. Although our work sheds additional light on this
issue, the lack of empirical analysis with which to accurately
predict outcomes of possible interventions reinforces the value
of testing and evaluating alternatives to determine what
strategies can best tap the work potential of beneficiaries
without jeopardizing the availability of benefits for those who
cannot work.
Mr. Chairman, this concludes my prepared statement. At this
time, I will be happy to answer any questions you or the other
Members of the Subcommittee may have.
Related GAO Products
Social Security Disability Insurance: Factors Affecting
Beneficiaries' Return to Work (GAO/T-HEHS-98-230, July 29,
1998).
Social Security Disability Insurance: Multiple Factors
Affect Beneficiaries' Ability to Return to Work (GAO/HEHS-98-
39, Jan. 12, 1998).
Social Security Disability: Improving Return-to-Work
Outcomes Important, but Trade-Offs and Challenges Exist (GAO/T-
HEHS-97-186, July 23, 1997.)
Social Security: Disability Programs Lag in Promoting
Return to Work (GAO/HEHS-97-46, Mar. 17, 1997).
People With Disabilities: Federal Programs Could Work
Together More Efficiently to Promote Employment (GAO/HEHS-96-
126, Sept. 3, 1996).
SSA Disability: Return-to-Work Strategies From Other
Systems May Improve Federal Programs (GAO/HEHS-96-133, July 11,
1996).
Social Security: Disability Programs Lag in Promoting
Return to Work (GAO/T-HEHS-96-147, June 5, 1996).
SSA Disability: Program Redesign Necessary to Encourage
Return to Work (GAO/HEHS-96-62, Apr. 24, 1996).
PASS Program: SSA Work Incentive for Disabled Beneficiaries
Poorly Managed (GAO/HEHS-96-51, Feb. 28, 1996).
Social Security Disability: Management Action and Program
Redesign Needed to Address Long-Standing Problems (GAO/T-HEHS-
95-233, Aug. 3, 1995).
Supplemental Security Income: Growth and Changes in
Recipient Population Call for Reexamining Program (GAO/HEHS-95-
137, July 7, 1995).
Disability Insurance: Broader Management Focus Needed to
Better Control Caseload (GAO/T-HEHS-95-164, May 23, 1995).
Social Security: Federal Disability Programs Face Major
Issues (GAO/T-HEHS95-97, Mar. 2, 1995).
Chairman Shaw. Thank you. Do any Members seek recognition?
Mr. Matsui. Just very briefly, Mr. Chairman, thank you.
Thank you for your testimony.
In terms of the health issue, could you tell me how many
people that go off and go into the job market actually end up
having health benefits. Do you have that statistic available?
Ms. Fagnoni. We don't.
Mr. Fallavollita. At least among the sample that we
interviewed, it was one-third of the folks while they were on
the rolls--this is while they were working--one-third of the
folks had employer-based health insurance, and the remaining
did not.
Mr. Matsui. So the remainder, the approximately 65 or 67
percent, did not have health insurance. What happens after the
health insurance benefit runs out after 2 years? That's the
critical point. One of you can----
Ms. Fagnoni. Well, I think this is where there are
concerns, and there is a disincentive for people--you hear a
lot from people who say they are afraid to go over that $500--
currently DI is at $500 maximum to have their benefits cut off,
and then ultimately their health benefits are cut off. They
will cut off their work effort or sometimes stop working just
to protect those health benefits.
Mr. Matsui. Right.
Is that what your surveys basically point to? The sample
that you took----
Ms. Fagnoni. Well, what the sample really told us--we were
interviewing and surveying people who were working--these
disabled beneficiaries who were working, so we were really
looking at what helped them get to work, and what they said was
the health interventions were very important.
Mr. Matsui. After the benefits run out, I guess they can
pick up health insurance, though it is hard to imagine the
individual can pick it up himself or herself, since the cost
becomes prohibitive because of income levels, right?
Ms. Fagnoni. Clearly, the loss of health coverage is a big
concern and barrier to people who are attempting to move from
disability into the work force and stay in the work force.
Mr. Matsui. Would you like to respond?
Mr. Fallavollita. There is a Medicare buyin for DI workers
if they leave the rolls through their earnings. They have the
option to purchase the Medicare, but the monthly premium may be
prohibitive for folks in lower income wages. For instance, it
is about $400 a month to buy in to that, and so that can add up
for folks who are not making an income where they can afford
that.
Mr. Matsui. Thank you very much.
Chairman Shaw. Yes, sir.
Mr. Hulshof. Ms. Fagnoni, under current law, State
vocational rehabilitation agencies are really the only game in
town as far as providing rehabilitation services for disabled
beneficiaries. I am also aware that the Social Security
Administration has implemented a program where individuals are
referred to alternative providers, but only after 4 months has
passed and it is assumed that the vocational rehabilitation is
not going to provide services. Is this program working?
Ms. Fagnoni. Well, as you heard the Commissioner say, and
Dr. Daniels, that program has not been up and running for very
long, and while they have something like 419 providers signed
up, very few people have been run through the system. I think
we were told something like 66 beneficiaries had actually been
able to take advantage of that alternative-provider system. And
I think they said that they are only now looking at the first
person to kind of have some outcome from that program. So,
there is not yet much to show from that effort.
Mr. Hulshof. Let me ask you, last year in reauthorizing the
Vocational Rehabilitation Act of 1973, Congress directed that
disabled beneficiaries would be presumed to be eligible for
vocational rehabilitation services unless the State can
demonstrate by clear and convincing evidence that the
individual is incapable of benefiting in terms of employment
outcome due to severity of impairment. And I know that it is
too soon to have any data, but will this change in law that we
had last year--do you think that will result in more
beneficiaries being provided services by State vocational
rehabilitation agencies, or is it just too soon to tell?
Ms. Fagnoni. One thing about that provision--if you look at
some of the reports we have done that have looked at return-to-
work effort, we have put a lot of emphasis on the fact that
SSA--when people walk in the door to apply for disability
benefits, SSA does not do a good job of informing people of
what different services might be available to them, and often
people are not in a position to want to focus on efforts to
return them to work or talk about vocational rehabilitation
because they are focused on trying to prove that they can't
work so that they can get disability benefits. So, what our
work has shown is that SSA overall only refers about 10 percent
of disabled beneficiaries to the State vocational
rehabilitation agencies.
So, unless there are other mechanisms for identifying who
else could benefit from rehabilitative services, then not many
people are getting to the vocational rehabilitation agencies in
the first place, so, I think at that front end we probably need
more focus coupled with more emphasis by the State vocational
rehabilitation agencies in serving disabled beneficiaries
coming from SSI and DI.
Mr. Hulshof. I appreciate that.
I yield back, Mr. Chairman, and I thank you.
Chairman Shaw. Thank you very much. We appreciate your
being with us today, and as usual, you have done a tremendous
job.
Ms. Fagnoni. Thank you, Mr. Chairman.
Chairman Shaw. Thank you for being with us.
The final panel is made up of Richard Blakley who is the
executive director of Services for Independent Living out of
Columbia, Missouri--I believe he will be further introduced--
Dr. Mary Gennaro, who is the director of Federal and State
Relations of the National Association of Developmental
Disabilities Councils, on behalf of Consortium of Citizens with
Disabilities; Jim McNulty, a member of the board of directors
of National Alliance for the Mentally Ill, in Bristol, Rhode
Island; and Jeffrey Carlisle, who is president of the National
Association of Rehabilitation Professionals in the Private
Sector, from Metairi--am I pronouncing that correctly?
Mr. Carlisle. Metairi.
Chairman Shaw. Metairi, Louisiana.
As with the prior witnesses, we have your full testimony
which will be made a part of the record, and we invite you to
summarize as you see fit.
We will be having another vote coming up in about 20 to 25
minutes. Hopefully, we can conclude this panel before that
vote, but before that I yield to the gentleman from Missouri.
Mr. Hulshof. Thank you, Mr. Chairman.
It is not often to have a constituent of mine who has
traveled from Missouri to come all the way to Washington, DC,
and so I am especially honored and proud to have a constituent,
Rich Blakley, who we will hear from. Rich is right now the
executive director for Services for Independent Living in
Columbia, Missouri. He has done a great job managing, I think,
19 members on his staff, but he has also been an activist and a
consultant not only in Missouri, but in Illinois. And recently,
in fact, just weeks before the election, we had a very
successful forum, that Rich put together, talking about these
very issues. And so, it is great to have Rich here to give
testimony, and it is a special honor and privilege to introduce
him to this Subcommittee.
Chairman Shaw. Thank you.
Mr. Blakley.
STATEMENT OF RICHARD BLAKLEY, EXECUTIVE DIRECTOR, SERVICES FOR
INDEPENDENT LIVING, COLUMBIA, MISSOURI
Mr. Blakley. Thank you. Thank you for those kind words,
Congressman Hulshof.
Mr. Chairman and Members of the Subcommittee, I am honored
to be here today.
I would like to talk about Social Security work
disincentives from being on the frontlines and dealing with
this subject on a day-to-day basis. I would also like to thank
Diana Beckley from the University of Missouri for assisting me
in preparing this testimony today.
First of all, one of the disincentives that we have seen in
Social Security on people with disabilities returning to work
is the complexity of the program. People with disabilities
coming out of a hospital and the newly injured go to the Social
Security Administration and they are asked, ``Can you work?''
And they have to say, no. to get benefits. The same individuals
then return to the vocational rehabilitation agency and are
asked, ``Can you work?'' They are told to say, ``Yes, I can,''
in order to receive benefits. What is the point of that? We
don't understand that.
There is a complexity of the issues that should not exist.
They need to be streamlined. They need to be taken care of.
They need somehow to be put into legislation so that you don't
have discrepancies between these two programs.
Vocational rehabilitation agencies do a good job, for the
most part. They vary from State to State. It depends from
counselor to counselor. The Social Security Administration does
a good job for the most part, but again, it depends on who you
talk to. It depends on what information they will give you. It
depends on what agency you go to and what office you go to.
One of the things that is also a disincentive to people is
when you ask them, why don't you get a job? Their answer is,
because I will lose. I will lose benefits. I will lose income.
I will lose health insurance. That is not always true, but the
information is not always given in a way that they can
understand or that they are willing to accept. Also, people
with disabilities are a cross section of the population. That
is not always a popular thing to say. Some people with
disabilities would rather sit home instead of working. That is
a fact.
I think that disincentives that exists must be removed and
removed in a manner that also encourages people to return to
work, if that is a feasible course of action for them.
Let me give you an example. I believe that in my testimony
that I mention this. At the age of 17, I became disabled
through a diving accident, and I became a quadriplegic. At that
point in time I earned enough credits or quarters--it was quite
awhile ago--I was able to earn $350 a month because of public
SSDI. It was tough going for awhile, many years. As time
carried on, I realized that I had to return to college. I
couldn't live on this the rest of my life. My parents couldn't
support me for the rest of my life. So, I had an incentive to
go to work through family encouragement and the knowledge that
I must return, if only to fulfill what I must do in the future
and that was to become an IRS employee for about 6 months
before I discovered another field which I have been in since.
Many people have these opportunities, and they need to be
given information which exists that they can return to work and
that there are incentives to return to work, as an earlier
speaker suggested.
A part of the Medicare system that we think needs to be
fixed but is an extremely difficult thing to talk about is the
discrepancy between the blind population and people who are not
blind. One, people could earn up to $1,000 a month, and not
lose benefits, whereas people who are not blind but they have a
disability can earn up to $500. It is not a popular issue to
talk about, but it is something that must be discussed. I
applaud the blind lobby for getting the job done. I think that
it is a terrific thing. But people with disabilities also must
be given that opportunity.
Let me just conclude by saying that I encourage you to
streamline this concept, and streamline the Social Security
process and make it much easier for people to access the
system, fix the system. Right now, Medicare especially is
broken. Medicaid is dying out, but Medicare is a train wreck,
and it is wrecking many people's lives. I encourage you to fix
it. Make it a ticket program. Millions of people depend on it.
Those who want to work get back to work and help part of
society as a whole.
Thank you very much for giving me the opportunity to
testify.
[The prepared statement follows:]
Statement of Richard Blakley, Executive Director, Services for
Independent Living, Columbia, Missouri
I want to thank the Chairman and the Committee members for
giving me the opportunity to present my thoughts and ideas
regarding the inherent work disincentives that currently exist
in the Social Security System for people with disabilities. In
addition, I wish to thank Congressman Hulshof for inviting me
to Washington to appear before his colleagues in the House of
Representatives. I consider it a privilege and an honor to be
able to give my comments to the Subcommittee on Social Security
in person.
There are a number of items in the Social Security Act that
are confusing, irritating, frustrating and incomprehensible to
the average individual who obtains a disability. I know this
because 23 years ago I was one of those individuals. Trying to
get through the bureaucracy and the tangled web of paperwork
that involves obtaining benefits is frustrating and sometimes
demeaning. My assumption was that after all these years Social
Security had changed significantly for people with
disabilities. After research for this testimony, it seems that
instead of changing, the tangled web of bureaucratic procedure
is essentially the same. Hopefully, we can now begin work on
changing the system to work for people with disabilities
instead of working against people with disabilities. Let me
give you an example.
Once a person is eligible for Title II or Title XVI of the
Social Security Act, they become dependent on their benefits
because of a number of factors. These include fear of losing
health insurance, fear of losing income, confusion, and basic
dependency. All of these factors prevent people from attempting
to enter the work force. In addition, there is a lack of
consistency within the various agencies that attempt to get
people with disabilities employed as opposed to Social
Security, which attempts to keep people unemployed.
If an individual wishes to be employed, the first step is
to contact the State Vocational Rehabilitation office. The
person with a disability is then hooked up with a Vocational
Rehabilitation Counselor. The Vocational Rehabilitation
Counselor asks, ``Can you work?'' If the person with a
disability says yes, then they will receive Vocational
Rehabilitation services if the individual meets the financial
eligibility guidelines. If the individual says no, then they
may be denied a college education, hand controls or a lift on a
van, any opportunity at some type of significant future
employment, or even a wheel chair that is tailored specifically
for their needs.
If an individual wishes to be granted benefits under Title
II or Title XVI, the person must go to the Social Security
office. At the Social Security office, they will be asked the
same question ``Can you work?'' Obviously, the individual with
a disability must give a completely different answer than what
was given at the Vocational Rehabilitation office. The answer
must be ``No, I cannot work.'' Only then will the person with a
disability receive benefits under the Social Security Act. In
addition, an individual typically waits six months prior to
approval due to medical exams, denials, appeals and
administrative law hearings.
As you can see, the two agencies are in direct conflict
with each other. This causes the number one work disincentive
that exists within the Social Security System. This
disincentive is confusion. The rules of the Social Security Act
are complex and changing all the time. You have Title II, which
consists of Social Security Disability Income (SSDI) and Social
Security Disabled Adult Child (SSDAC). In addition, Title II
contains Medicare, which, in most people's minds, is a program
for seniors, not for people with disabilities. More confusion
exists under Title XVI of the Social Security Act, which
includes Supplemental Security Income (SSI) and Medicaid. I
won't even begin to get involved int he different waivers that
vary from state to state. This is why I believe people with
disabilities often times, choose not to work.
If you ask a person who is on SSDI or SSI what will happen
if they work, the first answer you will hear is ``I will
lose.'' The answer ``I will lose'' can mean many things. It may
mean I will lose income, I will lose insurance, I will lose
attendant care, and I will lose benefits that I will never have
the opportunity to obtain once the trial work period is over.
Many people with disabilities are terrified of the prospect of
losing something as valuable as insurance or income even though
it may be a meager living condition in which they exist. Also,
there is an 18 month waiting period for pre-existing conditions
on most private insurance companies for people with
disabilities who have not had the opportunity to be covered by
a private carrier in the past.
I remember acquiring my disability at the age of 17.
Fortunately, I had worked enough quarters to qualify for SSDI
and eventually began paying into the Medicare system. My only
income for several years was $350 a month. I was lucky enough
to live with my parents who did my personal care and assisted
me with the financial ability to purchase a van. I realized I
could not live on this amount the rest of my life and only make
an additional $500 per month. Therefore, the decision to leave
the program was easier for me, however, it was still very
frightening being told by the Social Security Administration
that after a 9 month trial work period, I would never be able
to receive these benefits again. I can only imagine what it
must be like for an individual who is capable of working and
receiving higher benefits to leave the Social Security Program
and begin working. This ties into the confusion and direct
conflict that creates a significant work disincentive.
Another problem with Social Security is Title II of the
Act, specifically Medicare Insurance. Once again, we are
involved with confusion and misinformation. First, Medicare was
specifically set up for seniors and people with disabilities
were lumped into the program at a later date. If you ask
anybody on the street what Medicare is for, most individuals
will say that it is for the senior population. I believe that
people with disabilities should be pulled out of the Medicare
program and included in a new and innovative health program,
specifically set up for individuals with disabilities.
Medicare should be a program that does not drop you if your
Substantial Gainful Activity (SGA) exceeds $500. Medicare
should be a program that addresses the inequities between
disabilities when it comes to the SGA, i.e., people who are
blind as opposed to people who have any other type of
disability. I applaud people who are blind for having the
ability to raise their SGA to $1,100 per month, however, I
believe it is important that the SGA is equitable for everyone
that is involved. If two able bodied individuals are involved
in an automobile accident and one becomes blind, and the other
becomes a high level quadriplegic, the blind person will
receive a SGA of more than double what the quadriplegic will
receive. Therefore, I believe we need a program where the SGA
is evened out at $1,100 per month for everyone.
Medicare also is a terrible program in many other ways.
First, it has a two-year waiting period before you can acquire
benefits. Many individuals in that two year span of time, will
have their life savings wiped out, may become deeply involved
in debt through medical expenses, may become bankrupt, and may
be divorced. This is not an exception to the rule. These things
do happen to people who have to wait two years prior to
Medicare acceptance. Also, Medicare will not pay for health
care supplies or medication. People with disabilities usually
need some sort of supply or medication each month. Having a
disability is expensive. Medicare does not address this issue.
People with disabilities are forced to give up savings and
possessions in order to be eligible for the Missouri Medicaid
programs.
One major concern regarding Medicare is the payment for
durable medical equipment (DME). DME suppliers will not order
equipment before they receive prior approval from Medicare. The
reason is that they have not received payment upon a Medicare
denial if they order the DME prior t pre-approval. This takes a
significant amount of time and frustration on both the
consumers's part and the part of the DME supplier. In addition,
most DME is standardized. Medicare has extreme difficulty
purchasing specialized equipment for people with disabilities
that require something different from the norm. Finally, the
DME has a 20% co-pay. Most people with disabilities, on a fixed
income, who have a SGA of $500 per month, cannot afford a 20%
co-pay. To most individuals who qualify for Medicare, any co-
pay is too expensive.
Assistive technology is something that people with
disabilities are acquiring and using more and more frequently.
This is the technology age. People with disabilities have
discovered new ways to use old devices and are constantly
seeing new technological devices on the market that they cannot
afford and Medicare will not pay for. Addressing the technology
issue for people with disabilities is crucial. Technology is
ever changing, is a wave of the future, and definitely enhances
the quality of life and reduces medical expenses for people
with disabilities.
Medicare does not provide for attendant services unless
ordered by a doctor. Ideally, self-directed care would be paid
for which will enable people to seek employment. Medicare gives
no assistance on any type of attendant care unless prescribed
by a physician, therefore causing a tremendous hardship on
people who wish to live independently. Studies have shown that
people with disabilities must have the ability to live
independently before they can be employed. I strongly recommend
that self-directed attendant care services be available on the
Medicare Program.
There is a significant problem with the Subsidy Work
incentive under the Medicare rules. It puts a person with a
disability in a position that is demeaning and degrading. The
person with a disability must ask their employer to inform the
Social Security office that they cannot do the same work as an
able bodied employee. This may mean that the individual works
slower or needs more supervision. At any rate, forcing an
employee into a position of telling the employer that they
cannot perform satisfactory work puts the person with a
disability in a very precarious position. An employer may find
a way to fire the employee, refuse a subsidy, or may ask the
employee why they cannot keep up. The whole scenario behind an
employee going to their boss and telling them that they cannot
do the work expected without more pay is ludicrous. Imagine
yourself in this situation. You do the best work you can,
cannot make over $500 per month, want to stay employed
therefore, you have to tell your boss you cannot do the job.
This must be streamlined, re-defined or generally accepted by
the Social Security Administration when an applicant applies,
based upon information given by the applicant.
The Medicaid Program in Missouri is not as bad as the
Medicare Program under Title II. Unfortunately, this program is
set up for individuals with disabilities who have virtually no
assets. Once again, the rules of the program are confusing and
filled with misinformation. In Missouri, you can own your own
home and a vehicle and have less than $1,000 in the bank before
you are eligible for Medicaid. Once eligibility is established,
you are limited to a certain amount of income unless you enroll
in the 1619B Work Incentive Program. The Work Incentive Program
income guidelines vary from state to state. In Missouri there
is a very liberal income exclusion so that the thresh-hold
amount does not apply. However, in other states it varies
around $15,000 to $40,000. There is no real consistency between
states. This should be rectified in any bill that streamlines
the system and eliminates confusion.
Under the Medicaid Program, once again, there is no self-
directed attendant care. A person with a disability has an
option to a nursing home or has an option for a home health
care agency, but they have no option to hire, fire and manage
their own attendant. I know an individual who is currently
employed, receives Medicaid benefits, is on the 1619B Program
and uses a home health care agency. Because of the lack of
control over the attendant services that he receives, this
individual is continuously late for work, has pressure sore
problems which prevent him from being at work 8-5 everyday, and
has an overall morale problem because of his lack of control
over the attendant services that he receives. Fortunately, this
gentleman has an understanding employer who has been in a
similar situation and can relate to the everyday life problems
that are faced by a lack of self-directed attendant care.
National ADAPT is working with Congress on the MiCasa attendant
care bill which, if passed, would provide self-directed
attendant care services for all eligible participants. MiCasa
is an excellent example of self-directed attendant care and
would greatly enhance the ability of people with disabilities
to be independent and to give them the opportunity to go to
work. I have never heard of an individual who is in a nursing
home that is also employed. Nursing homes are there for people
with chronic or terminal illnesses. People with disabilities
are not ill therefore; they do not belong in nursing homes.
Under Title XVI, people with disabilities' SSI is tied
directly to a Federal Benefit Rate (FBR) of $500. Exceeding the
FBR in a work environment will once again result in the loss of
cash benefits. This is a disincentive to work that consistently
exists. A person may be able to keep their Medicaid under
1619B, but may lose cash benefits that they have been relying
on to survive. This is a frightening and confusing prospect for
people with disabilities.
In Missouri, Medicaid in not a bad program. In other
states, it is not quite as good. In some states it is better.
That is the problem with the lack of consistency. It should not
depend on where you live that will determine what services you
receive. Let me give you an example, using myself.
Five years ago, I lived in the heartland of Illinois.
Because I have a disability, I automatically qualified for
public aid, yet I made an annual salary of $35,000 a year. I
was on a spend-down program and was able to receive self-
directed personal attendant services paid for mostly by
Medicaid. My co-pay for the attendant services was $50 a month,
while the state of Illinois paid the additional $650 per month
for an attendant, morning and night, I lived on my own, without
an attendant in my household. When I moved to Missouri, it all
changed. I found that I could not qualify for a nonexistent
attendant program, due to a lack of a Waiver. I was surprised
and shocked to find that in order to live on my own it would
cost $700 per month, out of my pocket. This was unaffordable. I
had to improvise. I rented a 2-bedroom apartment and gave free
room and board to a person to assist me with my daily needs. In
addition, I paid, and continued to pay $200 a month for a back-
up attendant to relieve the person who works for room and
board. This situation is far from ideal. I personally feel
penalized for having a disability. I'm not alone in this
situation. People with disabilities, in Missouri, who are
employed cannot make over $15,000 per year in order to receive
self-directed care. This is a huge disincentive in our state.
Once again, it goes back to the necessity for a National Self-
Directed Care Program.
In closing, let me state that people with disabilities have
been subtly discriminated against by a bureaucracy that is
demeaning, patronizing, confusing and set up to keep people
with disabilities at poverty levels while penalizing them if
they work. Sometimes the penalties are genuine and at other
times they are perceived. Either way, the indisputable fact is
that they exist and keep people with disabilities from seeking
gainful, meaningful employment. The work disincentives that are
deep-seated within the Social Security Act must be erased.
These intrinsic penalties have been in existence for too many
years. It is time to change the system. Give it an overhaul,
lose the disincentives and allow people with disabilities the
dignity that is afforded everyone else in our society. Don't
take away the system, but please, I implore you change the
system.
Chairman Shaw. Thank you, Mr. Blakley.
Ms. Gennaro.
STATEMENT OF MARY GENNARO, J.D., DIRECTOR, FEDERAL-STATE
RELATIONS, NATIONAL ASSOCIATION OF DEVELOPMENTAL DISABILITIES
COUNCILS; AND MEMBER, CONSORTIUM FOR CITIZENS WITH
DISABILITIES, SOCIAL SECURITY TASK FORCE
Ms. Gennaro. Chairman Shaw, Members of the Subcommittee,
thank you for the opportunity to testify.
I am Mary Gennaro, director of Federal-State Relations for
the National Association of Development Disabilities Councils.
I am also a member of the Social Security Subcommittee of the
Consortium for Citizens with Disabilities, and it is as a
member of that task force that I testify today. Last, I am also
a person with a disability, namely cerebral palsy.
As a person with a disability who is employed, I am one of
the fortunate few. This Nation cannot continue to allow human
potential to be trapped and wasted. Doing so exacts too high a
price.
About 70 percent of adults with severe disabilities are not
employed--one of the largest minorities in the Nation without
jobs. But people with disabilities want to work, and they want
to have that opportunity, especially at a time when our economy
is flourishing and unemployment rates are at all time lows.
The question is what is preventing people with disabilities
who want to work from working? What major barriers stand in
their way? Some of these are: Lack of access to vocational
rehabilitation and employment services and choice in those
services and providers; lack of access to health care coverage,
financial disincentives and complex and confusing rules about
what happens to beneficiaries when they work. These are rules
that often punish their efforts and success rather than
assisting them. These are not all the barriers, but if we
address these, we will take a significant step forward in
assisting people.
This Subcommittee well knows the benefits of a ticket to
work. It is through your dedication on this issue and the
bipartisan work of the last Congress that we are here today
with strong bipartisan legislation in the Senate and you poised
to work on this also, hopefully in a bipartisan way.
The ticket moves us one big step closer to addressing this
problem, but there remains a problem. Beneficiaries will not
use the ticket if they continue to fear loss of their health
care coverage. That is the next disincentive that I would like
to discuss.
The problem for DI beneficiaries is that they lose Medicare
after working for a period of time and earning a set amount of
money. They can lose coverage with earnings of as little as
$500 a month. They lose coverage, but their disability remains
and their need for health care remains, but if they took a
part-time job, or a low-paying job, it is likely that their
employer does not offer health care coverage. If coverage is
offered, it is likely to be too costly, given the amount of
earnings that the person has, or coverage may simply be
insufficient.
The Medicare buyin that currently exists is also
insufficient, costing $350 some dollars a month, it is out of
reach of most people, and currently only 170 people take
advantage of enrollment in this program.
Given the choice between work and health care, people
choose the only choice possible: preserving their life and
health. But this is no choice that anyone should have to make.
The results are needless, wasted potential. We need to continue
Medicare for people who need it. It must be extended without an
arbitrary cutoff after a certain number of years. Doing so is
not a matter of adding new people to the program, but of
maintaining critical coverage for former beneficiaries who have
actually been able to move into work. People will simply have
to choose between work and future risk to life and health in 3
years, 5 years, whatever arbitrary limit we set. The choice is
unacceptable.
People on SSI also face a problem in regard to health care
when their earnings rise, and we must be able to extend health
care to them as their needs continue. And we need to let the
States extend Medicaid in other ways. To assist people with
disabilities, we need it to work. And we should encourage
States to develop systems to support the needs of people with
disabilities and give them the option to assist them to work.
One of these ways is through personal care assistance.
The other disincentive for people is financial, and we have
discussed that along with the others today. The SSDI Program
does not allow for a gradual reduction of benefits, and it is
similar to the SSI Program. In the 105th Congress, you
supported a mandated demo to look at the gradual decrease, and
we hope you will again include that in any legislation that you
put forward.
Finally, as far as barriers are concerned, I wanted to
mention the complex, confusing nature of the rules that people
who are beneficiaries of the system must comply with. They are
confusing; they are complex. People have difficulty getting
information, clear information.
Given the risks that people face when they work, it is
understandable that they fear using the work incentives. They
fear their work will trigger continuing disability reviews.
This is not appropriate. We need to protect people so that they
can attempt to work and not fear that work will bring an end to
the benefits they still need because their disability remains.
Also, people are fearful they will not be able to reenter
benefits should they remain disabled, but somehow are now
unable to work. We also must address this here so that people
can step forward and trust that they will be rewarded for their
efforts, not punished.
And we need to give people better access to the information
that they need in order to work. Therefore, we need to create a
more community-based program of information and assistance so
that people can have dependable information and have an
understandable way so that they really know the impact. And we
need to fund protection and advocacy services for individuals.
They will be navigating a new system, and they need help and
assistance in doing so.
We have a tremendous opportunity here. I hope we can take
it and move forward. We support the bill in the Senate. It does
not do everything, but it has important balances. No bill can
address every issue, but it moves us a great deal ahead.
Thank you.
[The prepared statement follows:]
Statement of Mary Gennaro, J.D., Director, Federal-State Relations,
National Association of Developmental Disabilities Councils; and
Member, Consortium for Citizens with Disabilities, Social Security Task
Force
Chairman Shaw, Members of the Subcommittee on Social
Security, thank you for the opportunity to testify regarding
barriers preventing disability beneficiaries from returning to
work. I am Mary Gennaro, Director of Federal-State Relations of
the National Association of Developmental Disabilities
Councils. I am also a member of the Social Security Task Force
of the Consortium for Citizens with Disabilities and I am here
testifying on behalf of the Task Force. Lastly, I am a person
with a disability, namely cerebral palsy.
The Consortium for Citizens with Disabilities (CCD) is a
working coalition of national consumer, advocacy, provider and
professional organizations working on behalf of the 54 million
children and adults with disabilities and their families living
in the United States. The CCD Social Security Task Force
focuses its work on disability policy issues and concerns in
the Supplemental Security Income (SSI) program and the
disability programs in the Social Security Old Age and
Survivors programs. The CCD Social Security Task Force
appreciates the opportunity to comment regarding the barriers
preventing disability beneficiaries from returning to work.
We wish to acknowledge and thank the Social Security
Subcommittee for its longtime commitment and leadership in
addressing the barriers that prevent disability beneficiaries
from returning to work. As the Subcommittee knows, people with
disabilities want to work, in spite of the daunting, often
impossible barriers in their attempts to do so. Over the past
few years these barriers have come into sharper focus and
efforts to address them have intensified. In the last Congress,
the Social Security Subcommittee focused its efforts on a
legislative response to the barriers to employment faced by
people with severe disabilities. It is largely because of the
Subcommittee's work to fashion an effective legislative
response on this critical issue that we are here today, one
important step closer to positive change--positive change that
will bring economic opportunity, greater freedom and
independence, and untold other benefits, to so many people who
long to more fully share their talents in their communities and
in this great nation.
The Problem
The Presidential Task Force on Employment of Adults with
Disabilities indicates in its first report ``Re-charting the
Course,'' that about 70% of adults with severe disabilities are
not employed--one of the largest minorities in the nation
without jobs.\1\ We all know that this is unacceptable,
particularly when our nation's economy is flourishing and
unemployment rates are at near all time lows. People with
disabilities want to work. A 1998 Harris poll found that seven
out of ten (72%) of people with disabilities age 16-64 who are
not employed say they would prefer to be working.\2\ There are
4.8 million individuals receiving Social Security disability
benefits and 3.6 million individuals with disabilities, aged
18-64 receiving Supplemental Security Income benefits (SSI).
Some Social Security Disability Insurance (SSDI) beneficiaries
and SSI beneficiaries are simply unable to work because of
their impairments. Some are very seriously ill, others have
terminal illness. In fact, SSA has found that 20% of people
receiving benefits die within five years. Other people
receiving benefits have work potential and want to work to the
maximum extent of their physical and mental capabilities. It is
for this later group that the CCD Social Security Task Force
testifies today.
---------------------------------------------------------------------------
\1\ Re-Charting the Course--A Report of the Presidential Task Force
on Employment of Adults with Disabilities, November 15, 1998.
\2\ National Organization on Disability/Louis Harris Survey,
conducted April and May of 1998.
---------------------------------------------------------------------------
Barriers to Employment for People with Disabilities
If people with disabilities want to work, what is it
preventing so many from doing so. The barriers to work are
many, yet there are ways we can break down these barriers. We
must not be discouraged by the statistics, for if barriers to
employment for people with disabilities are seriously addressed
these statistics will improve and people with disabilities will
work. Some will attain economic self-sufficiency; others will
earn enough to move off of benefits, but will require some
ongoing support to assist with the extraordinary expense of
living and working with disabilities. This support may consist
of health care, personal assistance, and housing subsidies,
transportation, child care, etc. Still others will work to
their maximum potential and continue to require both some cash
assistance as well as other supports. In all instances, people
with disabilities want to be active members of society,
contributing what we can and taking only what we need to
survive and prosper.
Some of the barriers that keep SSDI/SSI beneficiaries from
working are:
Lack of access to vocational rehabilitation and
employment services and lack of choice in vocational
rehabilitation and employment services;
Lack of access to health care coverage
Financial Disincentives
Work Incentives are Complex and Can Hinder Work
Attempts
Barrier: Lack of Consumer Access to and Choice of Vocational
Rehabilitation and Employment Services and Providers
Few beneficiaries of SSDI/SSI are referred for vocational
rehabilitation, and fewer return to work because of these
services. The Congressional Budget Office (CBO) has estimated
that about 10 to 15 percent of new SSDI and SSI beneficiaries
are referred to State Vocational Rehabilitation (VR) agencies,
and about 10 percent of those referred are accepted for
services. 1998 data from the Social Security Administration
(SSA) indicates that last year 9,950 SSDI or SSI beneficiaries
moved off of disability benefits into employment due to SSA
funded VR services. During that time about 4.8 million disabled
workers received monthly SSDI benefits, and about 3.6 million
individuals with disabilities, aged 18-64 received SSI
benefits.
In addition to limited access to services, SSDI
beneficiaries or SSI recipients have no choice in the providers
of their vocational rehabilitation and employment services.
Historically, consumers have been assigned to a service
provider, which by law had to be a state vocational
rehabilitation agency, usually by type of disability, rather
than type of services required. Now beneficiaries of SSDI and
SSI,, not accepted for services by VR, have access to an
Alternate Participant program, but this program is
significantly hindered by the current reimbursement system.
Consumers who determine that they are not receiving appropriate
or high quality services generally have no recourse other than
to purchase services themselves from private vendors. Given the
cost of private services and the state of most consumer's
finances, this is an option very few can afford.\3\
---------------------------------------------------------------------------
\3\ SSA Disability Program Redesign Necessary to Encourage Return
to Work, GAO, April, 1996, pp 48-56.
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Recommendations to Improve Access to and Choice of Services and
Providers
Enhance Consumer Choice. The Subcommittee understands the
need for consumer choice and knows that benefits will result
from increased choice in and access to services. H.R. 3433, the
``Ticket to Work and Self-Sufficiency Act,'' introduced by then
Subcommittee Chairman Jim Bunning and Ranking Minority Member
Barbara Kennelly, passed the House overwhelmingly by a vote of
410 to 1 in the 105th Congress. The ``ticket to work'' program
contained in H.R. 3433 was incorporated, with only a few
refinements, into S. 331, the ``Work Incentives Improvement Act
of 1999,'' which was introduced in the Senate and recently,
overwhelmingly approved by the Finance Committee. Active
participation in the rehabilitation process increases the
chances of a successful outcome. The ability to choose one's
own services and providers recognizes SSDI and SSI
beneficiaries as an adults, capable of making significant life
choices. This ownership in the rehabilitation process thereby
enhances the individual's self-esteem and confidence. Choice is
important for all consumers of rehabilitation and employment
services. Some people with disabilities may need assistance in
exercising choice and such assistance must be easily available
through out the rehabilitation process.
Increase Access. The ticket should be available to all
SSDI/SSI beneficiaries enabling those who wish to attempt work
to have the opportunity to pursue their goals. Consumers must
be able to choose from among the many thousands of public and
private rehabilitation, employment service, and related
providers in the nation. SSDI/SSI beneficiaries must be able to
access the services they need whether provided VR, private
providers, or a combination of both.
Reward Outcomes. Payment for services must encourage
outcomes. It should encourage work by all SSDI/SSI
beneficiaries, regardless of their ultimate work capacity.
Instead of rewarding providers only for removing people from
the rolls, it should reward providers for assisting people to
minimize their dependency on cash assistance programs. Paying
providers a portion of the savings realized by the federal
government will enable many more people to work to their full
capacity resulting in greater savings than only paying for
those attaining SGA. Payments should be made on a milestone/
outcome approach.
Provide for an Advisory Commission. Designing and
implementing this program will be a significant challenge to
SSA. We recommend that a Commission with equal representation
from consumers and their self-selected representatives,
providers, and employers be appointed and charged with
responsibility to assist SSA in this endeavor. The Commission
should have broad authority to research, model, test, and
recommend the final structure of the program to SSA and the
Congress by a date certain. It is imperative that the missteps
that occurred during implementation of the Alternate
Participant program be avoided.
Barrier: Access to Health Care Coverage
Access to health coverage is increasingly cited as the key
obstacle to employment. People fear losing medical benefits
that can mean the difference between life and death. A ``ticket
to work'' program will go a long way in addressing some of the
major barriers to employment, but if lack of access to health
care benefits is not addressed, the success of the ``ticket''
will be greatly hindered. Until they can be assured that
working will not threaten their ability to receive necessary
health care services, SSDI beneficiaries and SSI recipients
will not take full advantage of what a ``ticket'' program can
offer. In fact, what a ticket program can offer is limited
unless the other barriers to employment discussed in our
testimony are addressed.
Medicare
Currently SSDI beneficiaries are eligible for Medicare
benefits 24 months after becoming eligible for cash benefits.
They receive Hospital Insurance (Part A) and Supplementary
Medical Insurance (Part B). (Part B is voluntary, but virtually
all Part A beneficiaries enroll in Part B.) The Part B premium
of $45.50 is deducted from the individual's benefit check. SSDI
beneficiaries lose cash benefits, after they have completed a
nine month trial work period and a 3-month grace period, and
earn $500 or more a month. The average monthly cash benefit is
$733. (The trial work period consists of nine months within a
5-year period during which a beneficiary is able to test his or
her ability to work without losing cash benefits or Medicare
coverage. Earnings of as little as $200 a month will be
credited toward the trial work period.) After the trial work
period and 3-month grace period, Medicare Part A coverage
continues for a 36-month extended period of eligibility and
cash benefits are suspended for any month in which the
individual earns $500 or more in income. After this extended
period of eligibility an individual earning $500 or more a
month will be found to be able to engage in substantial gainful
activity and no longer eligible for benefits. Medicare coverage
will cease. If the person is still ``medically disabled'' he/
she can purchase Medicare through payment of monthly premiums,
currently $309 a month for Part A and $45.50 per month for Part
B at a total cost of $354.50 a month. It is quite hard to
imagine how an individual whose earnings may be as low as $500
a month ($6,000/ annually or under $42/day) could afford to
continue Medicare. Last year, 170 people nationwide were
enrolled under this buy-in program. We believe that the premium
cost is prohibitive for many people with disabilities.
What this means in real life terms is that an individual
with a disability may be working to their fullest potential at
a part-time job, or at a full-time job with limited earnings
and lose their cash benefits and health care coverage. Their
part-time job doesn't offer health insurance, they find it
difficult to qualify for insurance in the private market, or
private insurance simply does not provide an adequate benefit
package. Yet, their need for health care has not changed.
Forced to choose between critical health care and a job, there
is only one choice possible; people with disabilities choose to
preserve their life and health and remain trapped on benefits
as a consequence.
Many SSDI beneficiaries find they need Medicaid to
supplement their Medicare coverage and to cover the cost of
Medicare premiums, deductibles, and cost sharing requirements.
Medicare does not cover prescription drugs, non-medical
personal care or personal assistance services. Many people with
disabilities need these critical and sometimes commercially
unavailable benefits. Clozapine, taken by an individual with
schizophrenia, or the personal care received by an individual
with a physical disability enabling them to bathe, eat, dress
and accomplish other activities of daily living can be the very
things which enable employment. Needing to meet the income and
asset limits of Medicaid buy-ins then acts as another
disincentive to work.
Medicaid
Medicaid is a federal-state health insurance and long term
care program for certain low-income people. In all but 11
states, individual's who are eligible for SSI are automatically
eligible for Medicaid. (The other 11 states link Medicaid
eligibility to Section 209(b) disability definitions which may
be more restrictive than SSI criteria.) Medicaid mandates
coverage of a core set of services for all beneficiaries and
gives states the option to cover 34 additional services. Many
of these optional services, such as physical therapy,
occupational therapy, prescribed drugs, prosthetic devices,
rehabilitation services, personal care services, and home and
community-based waiver services, are very important for persons
with disabilities.
To be eligible for SSI, and thus eligible for Medicaid in
most states, an individual must be disabled, according to the
SSA definition of disability and meet the income, assets and
resource criteria set in the program. Generally, SSA defines
disability as the inability to engage in ``substantial gainful
activity'' (SGA) by reason of a physical or mental impairment.
The current SGA level is $500 per month for non-blind
individuals and $1,110 per month for the blind. Other
eligibility criteria requires that an individual's
``countable'' income fall below the federal maximum monthly SSI
benefit, which is currently $500 for an individual, and $751
for couples. The current resource limit is $2,000 for an
individual and $3,000 for couples.
Unlike SSDI beneficiaries, SSI recipients can earn more
than $500 a month and continue to receive cash benefits if they
continue to be disabled, but for their earnings. Section
1619(a) and (b) of the Social Security Act allow cash benefits
to be gradually reduced as income increases. Cash assistance is
decreased $1 for every $2 in earned income. Eligibility for
cash benefits will end when the amount of countable income
equals the maximum benefit level for an individual. Currently,
this ``break even point'' is $1,085 per month. When eligibility
for cash benefits end, SSI recipients can continue to receive
Medicaid if they continue to meet all other requirements for
SSI eligibility (disability status, assets and resource
limits), they need Medicaid in order to obtain or continue
employment, their earnings are not sufficient to provide a
reasonable equivalent of the benefits they are receiving from
SSI and Medicaid. Each state sets an earned income threshold to
measure this last criteria. The thresholds vary by state. For
example, in 1998 the threshold in Arizona was $12,636, in
Missouri $19,014 and in New York $28,580.
Medicaid covered services often meet the critical everyday
needs of people with disabilities. Medicaid may fund
residential supports in the community and provide habilitation
services which assist people with disabilities in gaining,
maintaining and improving the skills necessary for everyday
life. It may provide assistive technology to enable an
individual to communicate, or a wheelchair to enable his/her
mobility. It may also cover prescription drugs that improve or
control a person's condition enabling them to function in the
workplace.
Private Insurance
For many reasons employer based or private insurance will
not adequately meet the needs of people with disabilities.
Employers may not offer a group plan, or the cost of the group
plan offered may be too expensive given the person's income.
This is especially true in part-time or low income jobs in
which many SSDI beneficiaries and SSI recipients are likely to
be employed. Furthermore, if insurance is offered, the benefit
package may be limited, failing to cover many of the items,
services and supports needed by many people with disabilities,
such as coverage of prescription drugs, mental health services,
durable medical equipment, assistive technology, physical,
occupational and speech/hearing/language therapies and personal
assistance services. Additionally, people with severe
disabilities may have difficulty accessing covered services
because the insurer uses a narrow definition of medical
necessity, limiting services to those which restore health, and
not covering services which maintain function and/or prevent
deterioration or loss of function. Also of concern is a recent
Harris Poll finding that: ``Among adults with disabilities who
are not covered by health insurance, one in five (18%) were not
able to get insurance because of a disability or preexisting
health condition.\4\
---------------------------------------------------------------------------
\4\ National Organization on Disability/Louis Harris Survey,
conducted April and May of 1998.
---------------------------------------------------------------------------
Private insurance also does not offer personal assistance
services, a critical need for many people with disabilities.
Personal assistance services refer to a range of services,
provided by one or more persons or devices, to assist an
individual with a disability to perform daily activities on or
off the job, which the person would typically perform if they
did not have a disability. These services may include
assistance with eating, toileting, grooming, dressing, bathing,
getting in and out of bed or one's wheelchair, meal planning
and preparation, managing finances, cooking, cleaning house,
handling money and on-the-job support.
Recommendations Concerning Access to Health Care Coverage--Continue
Medicare Coverage
Continue Medicare Coverage. To address the very real
concerns SSDI beneficiaries have regarding loss of Medicare
coverage, access to adequate coverage must be assured. The
current extended eligibility for Medicare and the Medicare buy-
in are simply insufficient to address the needs of
beneficiaries. Coverage for Medicare must be extended without
an arbitrary cut off after a certain number of years. This is
not a matter of adding new people to the program, but of
maintaining benefits for beneficiaries. The fear and concern
over loss of health care coverage is not addressed if there is
an arbitrary time limit on coverage. The barrier will be
addressed when beneficiaries can pursue employment secure in
the knowledge that doing so will not jeopardizing their life or
health. As long as the need for health care continues, access
to coverage must be assured.
Extend Medicaid and Allow a Buy-In to Coverage. Medicaid
must be available to people with disabilities whose earnings
now make them ineligible for coverage. SSI recipients must be
able to work to the maximum extent of their ability and have
continued access to Medicaid coverage. SSDI beneficiaries must
have access to Medicaid, without having to limit their earnings
or impoverish themselves, when they need such coverage to
supplement Medicare. States should have the option to expand
Medicaid to assure such access. States should also be able to
raise income and resource levels for Medicaid eligibility, and
establish affordable buy-ins for the program.
Assist Those Who Have Medically Improved. States should
also have the option to extend Medicaid coverage to people with
disabilities who are employed and become ineligible for
benefits due to medical improvement, but continue to have a
severe medically determinable impairment. This would enable
people to stay employed and retain coverage for the very
treatment, services and supports which enabled them to be
employed.
Encourage States to Develop Systems of Support. More must
be done to assist people with disabilities who work. The
federal government must support and encourage States to develop
systems to provide the items, services and supports people with
disabilities need in order to work. Lack of personal assistance
services often is major barrier to employment for people with
disabilities. Yet the availability of these services is
limited. Currently, only 31 states offer personal assistance
services as an optional Medicaid service. All of the states
should cover this critical optional service in their Medicaid
programs and more needs to be done to encourage States to
provide this coverage.
Help to Prevent the Need for Cash Assistance. Finally,
Medicaid coverage should be available to workers who have a
disability and who without health care and the services and
supports covered by Medicaid would likely become eligible for
SSDI and/or SSI. By extending Medicaid coverage in this way,
people can continue to work and not become dependent on cash
assistance in order to have their health care needs met.
Barrier: Financial Disincentives
SSDI beneficiaries who work lose their cash assistance
before their earnings are high enough to make up for the loss
of benefits. Cash benefits and health care coverage ends at
earnings of $500 or more a month, rather than declining
gradually as in the SSI program., The Employment Support
Institute at Virginia Commonwealth University studied this
problem in 1997, using decision-support software, called
WorkWorld and found that under current rules, an SSDI
beneficiary receiving the then average benefit amount of $704
per month, who attempted to work fell off a net ``income
cliff'' after earning just $600 per month or $7,200 annually.
The beneficiary did not recover the same net income level until
earnings reached $2,000 per month, or $24,000 annually. On the
other hand, because their benefits are reduced $1 for every $2
earned, after allowable income exclusions and disregards, SSI
beneficiaries do not reach the same ``income cliff'' until
their income reaches the State Medicaid threshold limit and
they may be found ineligible for continue Medicaid coverage.
Then they must attempt to purchase medical coverage.
Recommendations to Address Financial Disincentives
Reduce Cash Assistance Gradually. The SSDI program should
allow for a gradual reduction of benefits as earnings increase,
similar to the SSI program. This would help alleviate the
financial disincentive currently faced by SSDI beneficiaries
who want to work. SSDI benefits should be reduced by $50 for
every $100 earned beginning at SGA. The $50/$100 sliding scale
offset would replace SGA measures only for allowed SSDI
beneficiaries who attempt to work. SGA would remain a principal
criteria for establishing a work disability at initial
eligibility. In the 105th Congress this subcommittee supported
a mandate that SSA conduct a demonstration of this gradual
decline in benefits. We urge you to include it in this year's
bill.
Barrier: Work Incentives are Complex and Can Hinder Work Attempts
The effects of disability are not static over time.
Sometimes a person with a disability may be able to function
quite well and therefore, work to some degree, and at other
times the same person's functioning may become quite limited
preventing them from working. This fluctuation in ability is
not related to desire or willingness to work, but rather to the
nature of disability itself. Certain disabilities can be
episodic by nature. For instance, people with multiple
sclerosis often experience remission of their symptoms, only to
have their symptoms reoccur again.
Individuals face two barriers in this regard. First, they
may work successfully for a time, but their effects of their
disability may change or worsen, at which time they would need
to return to benefits. If an SSDI beneficiary attempts to get
back on benefits after their extended period of eligibility has
expired, or an SSI beneficiary attempts the same after their
benefits have been suspended for 12 consecutive months because
of work, both individuals will face a lengthy, rigorous process
to determine eligibility, as if the person were applying for
benefits for the first time. Secondly, work may trigger SSA to
perform a continuing disability review (CDR) to determine
whether a person remains disabled and eligible for benefits.
Even if a person is no longer receiving cash benefits due to
work, their health coverage is linked to their disability
status. Once again a person with a disability faces the threat
that their work will result in a loss of health care coverage.
Work Incentives for SSDI and SSI are very complex and
difficult to understand and can hinder work attempts. It can be
very difficult to get dependable, accurate information
regarding work incentives. Given the risks that an individual
with a disability may face (loss of health benefits, lose of
cash assistance, loss of other income based assistance) when
attempting to return to work, people fear using work
incentives. People may fear, with good reason, overpayments by
SSA. People can be surprised by overpayments of thousands to
tens of thousands of dollars even when they have reported their
earnings to SSA. Individuals may forego attempts to work
because of lack of or incorrect information regarding work
incentives. Within SSA, and in the community at large, there is
insufficient knowledge of and outreach regarding work
incentives. Individuals need information, advice, advocacy and
other supports and services in order to benefit from work
incentives and other programs designed to assist them in
securing or reentering employment.
Recommendations to Improve Work Incentives
Protect Workers Losing Eligibility Solely Due to Work. Work
Activity by a person with a disability should not be basis for
the scheduling of a continuing disability review. Further, work
activity by an individual with a disability should not be used
as the evidence that a person no longer has a disability.
Provide for Expedited Redeterminations of Eligibility. A
timely process must be available to promote reinstatement of
cash and health benefits when a person who continues to meet
SSA's standards for disability, finds him or herself unable to
work.
Establish a Community-Based Work Incentives Planning and
Assistance Program. In order to reduce the fear and risk
associated with attempting employment a person with a
disability must have access to timely, accurate information on
work incentives, and how use of work incentives will impact
his/her own life. Community based outreach will help assure
that people with disabilities receive the information and
assistance they need to make informed choices in regard to
preparing for, securing, maintaining and advancing in
employment, while at the same time accessing or maintaining
access to necessary health care and other supports and
services. Work incentives planners using decision-support
software can assist beneficiaries in making these informed
choices. SSA must also make a greater commitment within its own
program to have trained, knowledgeable and accessible work
incentive specialists through which SSDI/SSI beneficiaries as
well as community-based planners can obtain reliable
information and assistance.
Fund Advocacy and Assistance Services. Beneficiaries of
SSDI/SSI must have ready access to protection and advocacy
services to assist with a variety of issues and difficulties
which can arise as they navigate through a new way of meeting
the needs of people with severe disabilities for vocational
rehabilitation, employment supports and services, work
incentives and other support needs. History has shown us that
there will always be some instances in which people need an
effective advocate when deal with large complex, service
systems. If advocacy and assistance is not available people
will not be able to fully take advantage of what programs and
services have to offer them.
An Opportunity for Change
The issues we have discussed are major barriers to the
employment of people with disabilities. There are additional
obstacles faced by people with disabilities who want to work--
lack of adequate transportation and lack of affordable housing
are just some examples of these. Nor are the recommendations we
have outlined an exhaustive list of actions that can be taken
to address this problem. For instance, we also support a tax
credit for disability related work expenses as well tax
deductions. And we believe asset limitations should be raised
to facilitate savings and investment, which can help lessen
dependence. We believe that if the barriers and recommendations
we have discussed are included in legislation, we would move a
great step forward in assisting people with disabilities to
move into employment and reduce their dependence on benefits
and other assistance. We support S. 331 reported out by the
Finance Committee. We believe it represents important balances
of the concerns of key stakeholders and would be an important
step towards removing barriers. It does not address all issues,
no bill could, but it does address critical essential elements
necessary to bring positive change.
As we move forward and break down barriers to employment
for people with disabilities we will address another, more
hidden barrier--attitudes and prejudices regarding the
abilities of people with disabilities. We can help to erase
prejudice and shatter myths about the ability of people with
disabilities to contribute in the workforce and in every area
of life. Let's take the tremendous opportunity we have to begin
breaking down barriers.
[GRAPHIC] [TIFF OMITTED] T6970.003
Chairman Shaw. Thank you.
Mr. McNulty.
STATEMENT OF JIM MCNULTY, MEMBER, BOARD OF DIRECTORS, NATIONAL
ALLIANCE FOR THE MENTALLY ILL, BRISTOL, RHODE ISLAND; AND
PRESIDENT, MANIC DEPRESSIVE ASSOCIATION
Mr. McNulty. Thank you, Chairman Shaw and Members of the
Subcommittee.
I would like to request that my full statement be made a
part of the record.
My name is Jim McNulty. I am from Bristol, Rhode Island,
and I am here representing the 208,000 members and 1,200
affiliates for the National Alliance for the Mentally Ill, and
I would also add that I am president of the Manic Depressive
Association in Rhode Island which is an affiliate of the
National Depressive and Manic-Depressive Association which is
the largest consumer run mental health organization in the
country.
I would like to thank you very much for holding this
hearing to barriers on employment for people with disabilities.
Rather than read you my prepared testimony, I think I am
going to depart from it and tell you a little bit about myself,
my own disability which is not necessarily perceptible to most
people.
I have been living with manic-depressive illness for about
30 years now. I had my first episode when I was about 19 years
old. I was a sophomore in college, and it had a devastating
impact on my life, but it did not manifest immediately. It was
a lingering onset, if you will, and it wasn't until I was 38
years old that the full impact of it was felt.
So, I, unlike many people, was fortunate. I was able to
work from my twenties and into my thirties and buildup a
history of work. I graduated from an Ivy League university. I
had my own business. I was in town politics in a small town in
Massachusetts. I was doing very well. I had two children and a
very happy family life. But I had this illness which nobody
understood at that time which made things very difficult. As a
matter of fact, it ended up destroying my marriage, my job, my
career, and it ended up with me being in a hospital for a very
long period of time.
I have been extremely fortunate, because I have had the
supports that the lady from the GAO spoke about. She said that
one of the things they found in their survey is that a
supportive environment is the most important thing that most
people who went back to work had. I had that. I started from
owning a business--it was a pension consulting business. It
ended up with my first job as a homeless person delivering
bagels for a local bakery to coffee shops in the metropolitan
Providence area.
I was happy to have that job. I wanted to go back to work.
And I will tell you that I work with mentally ill people every
day. I work in a hospital. I go onto the units and deal with
seriously mentally ill people. They want to work. There is not
one of them that I have run into--I am sure that there must be
people who don't, but I haven't run into any personally. They
want to work.
As my fellow panelists have said, and as others have said
before me, they can't go back to work. They can't risk their
benefits. They don't have private insurance. They don't have
health insurance. They don't have the cliff that we talk about
falling off. And it is a terrible thing to watch because people
are torn.
Congresswoman Johnson talked about the Christmas season.
People wanted to work, but they couldn't go work the extra
hours because, if they did, they would lose all of their
benefits. That is a terrible position to put somebody into.
That is not the America I grew up in. That is not the America,
I think, that any of us wants to see.
As a person with a disability, I want to be accepted as a
part of the society. I also want to make my contribution as a
contributing member of the society. Believe it or not, I
actually like paying taxes--not more than my fair share,
however. It is an honor to be able to pay taxes, and I think
that many, many people that I work with on a daily basis
really, really want that opportunity. It cannot be
overemphasized, though, that the ticket to work, which is a
critically important part of what you are dealing with, is not
going to work without adding the medical insurance portion.
Believe me, I have thought about this; I have talked about this
for years. I think that this is the key.
I think this is a historic moment and a historic
opportunity, and I would urge this Subcommittee to move this
legislation forward, and I thank you very much for the
opportunity to be here today.
Thank you.
[The prepared statement follows:]
Statement of Jim McNulty, Member, Board of Directors, National Alliance
for the Mentally Ill, Bristol, Rhode Island; and President, Manic
Depressive Association
Chairman Shaw and members of the Subcommittee, I am Jim
McNulty of Bristol, Rhode Island, and I serve on the Board of
the National Alliance for the Mentally Ill (NAMI). I am also a
president of the Manic Depressive and Depressive Association of
Rhode Island. At the outset I would like to thank you for
holding this hearing on barriers to employment for people with
disabilities in Social Security's programs. This issue is
critically important for people with severe mental illnesses--
the fastest growing population represented on Social Security's
disability programs.
I, myself, have been living with manic depressive illness
and for the last nine years have worked with many other Rhode
Islanders suffering from severe mental illnesses, including
schizophrenia, manic depression, and depression. Over this
period I have found an almost universal, visceral desire on the
part of people with disabling mental illnesses to return to
meaningful, gainful employment. We want to be able to partake
as fully as possible in the privileges and responsibilities of
being citizens of the United States.
Sadly, for many of us the very system that is designed to
help us when we are at an ebb in our health and require the
social safety net will not allow us to recover dignity by
helping us return to work. As you know, the current ``all or
nothing'' approach to income support and health security
operates as a massive barrier to work for millions of Americans
with severe disabilities who seek to achieve greater
independence and dignity through employment. The dream of the
Americans with Disabilities Act (ADA) is full integration of
people with disabilities into the mainstream of American
society. Reform of the current system is absolutely essential
to achieving this important national objective.
NAMI believes that we offer a unique perspective on the
critical issues of work incentives, income supports, and
employment for people with severe mental illnesses, which are
brain disorders. NAMI is the nation's largest organization
representing people with severe mental illnesses and their
families. Through our nearly 1,200 affiliates and chapters,
NAMI represents over 208,000 consumer and family members and
works to promote greater public understanding of serious brain
disorders such as schizophrenia, major depression, bipolar
disorder, obsessive-compulsive disorder, and panic disorder.
Our major activities include research, education, and advocacy
aimed at reducing stigma and promoting independence for people
with brain disorders.
NAMI has a strong interest in the issue of work incentives,
income supports, and employment for people with disabilities.
We share your vision of restoring fairness to the Social
Security Administration's (SSA) disability programs by enabling
those who are truly disabled to receive benefits quickly and
stopping payments to persons who have fully recovered. Work is
extremely important to people with severe mental illnesses and
their families. Yet the supports necessary to achieve
employment and independence are simply not in place for most
people with these brain disorders who want to leave the
Supplemental Security Income (SSI) and Social Security
Disability Insurance (SSDI) rolls and join the workforce.
As I noted above, people with severe mental illnesses are
the fastest growing population within both the SSI and SSDI
programs. More importantly, SSA data reveal that people with
mental illnesses are coming on to the disability rolls at an
earlier age than their counterparts with other disabilities.
Given how difficult it is to get off the rolls through
employment--less than one percent successfully do so--it
becomes imperative to enact reforms that end the severe
penalties for those who are willing to take the tremendous
risks inherent in entering the workforce.
However, as important as promoting work is to so many
adults with severe mental illnesses, NAMI also believes that we
should not lose sight of how important Social Security's
disability programs are as fundamental safety net protections.
We should bear in mind that both SSI and SSDI have the highest
standard of eligibility for any public disability programs in
the world--that an individual be totally disabled and unable to
attain substantial gainful activity (SGA) in any job in the
American economy. Because of this strict definition, most of
the adults on these programs have severe disabilities and are
some of the most vulnerable citizens in our society.
For the vast majority of SSI and SSDI beneficiaries, the
cash assistance they receive meets basic everyday needs on a
week-to-week basis. Most have no savings, and depend on cash
benefits for food, clothing and shelter. For them, SSI and SSDI
are programs that are successful in preventing complete
destitution and keeping them out of a state hospital or an
institution (and considerably higher cost to taxpayers). Thus,
while NAMI strongly supports the goal of promoting work and
independence, we believe that these reforms should keep the
basic structure of SSI and SSDI in place in order to protect
the most disabled and vulnerable beneficiaries.
What are the major barriers to employment for people with disabilities?
Recent studies (including those from the General Accounting
Office, the National Council on Disability, and the National
Academy of Social Insurance) point to five principal barriers
to the employment of individuals with severe mental illnesses
who are SSDI or SSI beneficiaries. These barriers are: 1) the
loss of health benefits; 2) the complexity of the existing
work-incentives system; 3) financial penalties of working; 4)
lack of choice in employment services and providers; and, 5)
inadequate work opportunities. NAMI believes that all of these
barriers must be resolved to empower beneficiaries to go to
work.
The current SSI and SSDI programs themselves too often
serve as barriers to work. While the existing work incentives
in the Social Security Act do make it easier for some people
receiving SSI or SSDI payments to go to work, most people with
severe mental illness either do not know about, or do not
understand, the provisions and therefore do not utilize these
work incentives. This is true, both for the so-called SSDI
trial-work-period provisions and the SSI 1619(a) and 1619(b)
programs. For too many people with mental illness there is a
pervasive fear that employment will result in the immediate
cut-off of cash benefits and the concurrent loss of critically
important medical benefits. NAMI believes strongly that the
episodic nature of mental illnesses justifies the need to
maintain a basic safety net of assistance for people
experiencing acute occurrence of severe symptoms.
Mr. Chairman, as you well know, after certain income
disregards, some SSI beneficiaries lose 50 cents in benefits
for every $1 in labor earnings, or a 50-percent implicit tax
rate on earned income. By contrast, SSDI beneficiaries lose
access to cash assistance after reaching substantial gainful
activity (SGA) for nine months (not necessarily consecutively),
plus a three-consecutive-month grace period. (After losing cash
benefits, beneficiaries may have their SSDI benefits restored
for any month they don't work at the SGA level for an
additional 36 month period). However, even in cases where
people with mental illness decide to use existing Social
Security work incentives, they still face the loss of medical
coverage even if they are able to retain limited cash benefits
after reaching SGA.
The issue of access to medical coverage is absolutely
critical to people with serious brain disorders, especially
coverage for prescription drugs. This issue generates a high
level of concern among NAMI members. Without coverage for the
newest and most effective medications and other treatments for
disorders such as schizophrenia and major depression, many
people find it hard to maintain a stable life in the community,
let alone achieve complete independence through employment.
Moreover, for many people with severe mental illnesses, the
first step in the process toward competitive employment is
supported employment or low-wage, service-sector jobs. Few of
these opportunities offer employer-provided health insurance,
especially insurance that adequately covers someone with a
serious brain disorder. And, even when people have access to
private health insurance through employment, most of these
policies do not provide adequate coverage for treatment of
severe mental illnesses.
Some of the proposals now before Congress would begin the
process of eradicating these disincentives by addressing head-
on the loss of health insurance coverage for people who want to
move away from dependence on public programs through work. NAMI
strongly supports the goal of making the SSI and SSDI programs
more responsive to needs of people with serious brain disorders
who want to leave the benefit rolls for employment.
Why kind of reform does NAMI support?
1) It should expand individual choice through enactment of
a ``ticket to independence'' program for beneficiaries who need
employment and rehabilitation services.
2) It should address head-on the issue of extended health
coverage in a way that recognizes the unique treatments of
people with severe disabilities, including people with severe
mental illnesses.
3) It should begin the process of reforming the severe
penalties in the SSDI program that wipe out cash benefits just
as beneficiaries begin moving toward independence.
4) It should address the overly complicated and often
conflicting rules involved in each of these public programs.
5) It should do no harm to those beneficiaries who are
either not ready to go to work or who try to work and fail.
6) It must benefit all Americans--taxpayers, employers, and
families--yet furthering the goals of the ADA by promoting
empowerment and independence.
I would like to address these issues individually:
1) Promoting consumer choice through implementation of a
``ticket to independence'' program. The ``ticket to
independence'' program was the linchpin of last year's House
bill (HR 3433). As members of the Subcommittee know, this
legislation passed the House on June 4, 1998, by a margin of
410 to 1. NAMI strongly supports the policy underlying the
``ticket'' program. Giving individuals a return-to-work ticket
and placing them in control of their own return-to-work plan
will be putting consumers in the driver's seat for the first
time. Providers will be forced to compete for business on the
basis of how well they meet the individual needs of consumers.
State vocational rehabilitation (VR) agencies will no longer be
in control of the resources directed towards helping people
with disabilities achieve work and independence.
NAMI believes that the current public VR system is failing
people with severe mental illnesses. How? The problems
associated with VR result of the basic structure of VR being
inconsistent with the employment and training needs of people
with severe mental illnesses. VR is directed almost exclusively
toward a single goal: case closure. For VR agencies and
counselors, the process ends once a client is placed in a job
for the required time period and a file can be marked closed.
This inflexible goal fails to take into account the fact that
illnesses such as schizophrenia and manic depression are
episodic and intermittent. Moreover, for many people with
severe disabilities, this ``closure'' is only the beginning of
the process.
Ongoing supports and services are oftentimes critical to
one's ability to stay in a job over the long-term. The current
VR system spends too much time testing and assessing clients
prior to employment instead of actually placing people in jobs
and providing the ongoing supports and services that will help
them stay employed, get of the rolls, and (eventually) reach
full independence. People with severe mental illnesses
typically need assistance that is both flexible and ongoing to
help them live with their disability in a way that will
promote, rather than inhibit, work.
By giving individuals a return-to-work ticket and placing
them in control of their own return to-work plan, you will be
putting consumers in the driver's seat for the first time.
Providers will be forced to compete for business on the basis
of how well they meet the individual needs of consumers. State
VR agencies will no longer be in control of the resources that
are directed towards helping people with disabilities achieve
work and independence.
With a ``ticket'' program, individuals will be able to skip
the laborious testing and assessment process within state VR
programs. By receiving a ticket directly, consumers will be
able to select a provider on the basis of their relative
experience in serving people with severe mental illnesses and
their record in placing them in jobs. Moreover, extending
payments to providers for up to 60 months, based upon whether a
consumer stays in the workforce, will result in increased
access to support and follow-up services in the workplace.
By contrast, the current public VR system abandons clients
after a few short months on the job. NAMI urges that Congress
resist any effort to remove from last year's bill the
provisions repealing a) priority referral by Social Security to
state VR agencies and b) benefit deductions for persons
refusing to accept VR services. While the ticket program will
not fix every problem in the current system, when coupled with
extended health coverage it offers a very positive step
forward.
2) Extended health coverage. Health security is central to
the lives of people diagnosed with a severe mental illness.
Without access to coverage for treatment, any attempt to enter
the workforce is doomed to failure. Despite all the progress
made in scientific research on the brain, we still have no
``cure'' for diseases such as schizophrenia and manic-
depressive illness. Most treatments are palliative in nature;
i.e., directed toward the control of symptoms that allows an
individual to lead a normal life. The most advanced treatments
for severe mental illnesses involve medications such as new
atypical anti-psychotics and selective serotonin reuptake
inhibitors (SSRIs) that can be very expensive.
Even in cases where consumers and their families have
access to private health insurance coverage, such coverage
typically falls short of meeting the real needs of someone
diagnosed with a severe and episodic illness such as
schizophrenia or bipolar disorder. Many policies still have
discriminatory copayments and deductibles or lower treatment
limits that can exhaust coverage and resources as a result of a
single hospitalization. While we are making real progress in
rooting out this discrimination--through the federal Mental
Health Parity Act of 1996 and the 19 state parity laws across
the country--more work needs to be done. The reality is that
too many people with severe mental illnesses have been forced
onto public disability programs as a result of insurance
discrimination. Despite efforts to stay in the workforce, too
many consumers are pushed out of their jobs once their health
coverage has been exhausted or simply becomes unaffordable.
Once coverage for essential treatment is gone, consumers are
faced with no alternative but to go into poverty to qualify for
Medicaid.
The need to spend down resources to qualify for Medicaid
results not only from the disability and poverty, but also
because Medicare (available to SSDI beneficiaries after 24
months) does not include an outpatient prescription drug
benefit. This gaping hole in the Medicare program is a major
concern for NAMI in trying to reform these programs. Consumers
and their families should no longer be forced to go into
poverty to ensure continued access to treatment and some
measure of income security. The problems associated with the
mental illness benefit within Medicare are also the reason that
so many adults with severe mental illnesses are now ``dual
eligible'' for both SSI and SSDI.
Mr. Chairman, NAMI recognizes that this Subcommittee does
not have jurisdiction over the Medicare program. Further, we
also understand that the Ways and Means Committee's shares
jurisdiction over Medicare with the Commerce Committee, which
also has exclusive jurisdiction over the Medicaid program. NAMI
respects the need for standing committees in the House to
respect jurisdictional boundaries when developing major
legislation such as this. Nevertheless, NAMI believes that any
attempt to reform Social Security's disability programs to
promote work must forcefully address the issue of access to
health care coverage.
Addressing disincentives relative to cash benefits and
increasing access to employment and rehabilitation services
will not achieve the goal of getting more beneficiaries into
the workforce. More importantly, any system that creates a new
inducement to move toward employment is likely to fall short if
healthcare coverage is left out. Put simply, few consumers will
be willing to place their health coverage at risk, no matter
how effective a reformed system is in meeting their unique
employment and rehabilitation needs. Thus, inclusion of
meaningful extended health coverage will ensure that your
efforts to reform these programs meets both your expectations
and the aspirations of the disability community. NAMI therefore
urges you to work with your colleagues on the full Ways and
Means Committee and the Commerce Committee to ensure that
extended health coverage is made available to SSI and SSDI
beneficiaries willing to take the risks inherent in moving off
of cash assistance and into employment.
What kind of health coverage is needed? For SSDI
beneficiaries, Medicare coverage needs to extended far beyond
the 39 months (under Social Security's existing trial-work
period and extended period of eligibility programs). The
legislation approved last week by the Senate Finance Committee
(S 331) extends Medicare for 10 years for SSDI beneficiaries
going to work. Such an approach appears generous, but it is
needed to ensure that people stay in the workforce over an
extended period.
NAMI also believes that states should be allowed the option
of expanding Medicaid eligibility to outpatient prescription
drug coverage available to individuals who can and want to
work, but need coverage for medications to get into (and stay
in) a job. This coverage would be made available to individuals
who meet Medicaid eligibility standards on the basis of their
disability, but who would likely fall above Medicaid income
standards. Such a policy would ``catch people on the way down''
by filling the gaps in both private plans and Medicare so that
they will not have to permanently leave employment and go into
poverty to ensure health security. This is a critical
protection needed for individuals living with an episodic
illness of the brain that too often fails to follow a
predictable course.
Critics may charge that extending subsidized Medicare to
people in the workforce and extending Medicaid eligibility
beyond current income restrictions is either fiscally
irresponsible or unfair to current and future beneficiaries who
elect not to enter the workforce. At the same time, we have to
recognize that without a change in policy, every disabled
beneficiary who might take advantage of these options for
extended coverage would be receiving the same health benefits
if current law is kept in place. In other words, leaving the
status quo in place will, in all likelihood, result in the same
individuals staying on public assistance.
Moreover, the empowerment and increased self-esteem that
can result from being gainfully employed rather than dependent
on cash benefits is likely to have the added effect of actually
limiting future health care costs. Such a beneficial impact may
not be readily assessed as part of a Congressional Budget
Office ``score,'' but it something tangible that many people
with severe disabilities (including serious mental illness) and
their families experience everyday.
3) Reforming the SSDI ``cash cliff.'' Last year's House-
passed legislation HR 3433 required Social Security to conduct
a demonstration of a sliding-scale reduction in SSDI cash
benefits. This study is critically important for moving us
toward an income-security system that meets the needs of SSDI
beneficiaries in the 21st century. NAMI believes that the
ultimate solution to the problem of the ``cash cliff'' in the
SSDI program is a ``2 for 1'' cash offset for earnings above
SGA. Under current law, SSDI beneficiaries earning above the
artificially low SGA level can lose eligibility for cash
benefits all at once. This barrier to work strikes consumers
just at the point when they are beginning to achieve the
rewards of work and independence. It sends a terrible message
to consumers and their families when case managers and Social
Security field office staff tell consumers that they are better
off quitting their part-time job or severely cutting back their
hours.
The time is now to put in place a sliding-scale ``2 for 1''
offset that gradually reduces benefits as earnings rise. Such a
system would reward, rather than penalize, work. NAMI is deeply
troubled that Congress has been prevented from enacting this
fundamental reform because of concerns about the budgetary
impact of such a change in federal policy. It is important to
note that these estimates, in NAMI's opinion, are based not on
a careful evaluation of data generated from actual experience
of declining cash assistance on a sliding-scale basis. Rather,
these estimates appear to be based on untested assumptions
regarding ``induced entry'' or ``woodworking'' among persons
not currently in the SSDI program. NAMI believes that such
assumptions about the behavior of workers under a reformed SSDI
work-incentive program are simply invalid.
The experience of NAMI's consumer and family membership is
clear: there is no way that otherwise eligible consumers would
leave the workforce for a period as long as 36 months (the
duration of the disability determination process for many
consumers) to eventually take advantage of sliding-scale cash
benefits. The experience of the 1619(a) and 1619(b) programs
bears this out. NAMI is confident that a properly designed ``2
for 1'' offset demonstration program will reveal that the
fiscal burden is minimal and probably a benefit to taxpayers in
the long run.
4) Simplifying the process for consumers and families. One
of the most common complaints among NAMI members about the
current work-incentive structure is the Social Security
bureaucracy. When trying to get straight answers about one's
own benefits and possible opportunities for work incentives
(including PASS), consumers often find that SSA field offices
and headquarters staff give conflicting and confusing answers.
No doubt, this flows from the complexity of the programs,
especially in the case of PASS and 1619(a) and (b) for SSI
beneficiaries. However, this complexity does not excuse wrong
or misleading answers to basic questions and the (too often)
complete lack of effective counseling about what the real
options are. Making work incentive specialists available to
beneficiaries will go a long way toward helping consumers cope
with this new program. More importantly, these work-incentive
specialists should not be employees of SSA so that the advice
they give consumers is independent and free of the biases that
we often see in SSA field staff.
5) Beneficiary protections. NAMI feels strongly that any
legislation designed to reform the current SSA work-incentive
programs should first ensure that it does no harm to vulnerable
beneficiaries with severe mental illnesses and other severe
disabilities. No individual with a severe mental illness who is
receiving SSDI or SSI should have his or her benefits
jeopardized by enactment of these badly needed reforms. Several
proposals in Congress in recent years have contained important
protections ensuring that persons who take the risk and go to
work will not be subject to an unscheduled continuing
disability review (CDR).
The reality is that there are many people with mental
illnesses who are currently part of the SSI and SSDI programs
who are experiencing symptoms that are so severe that they
cannot be reasonably expected to enter the workforce over the
short-term. They should not be forced to participate in a work-
incentive program until they are ready. Likewise, participation
in this program should not be used as evidence that an
individual no longer meets the standards of eligibility for SSI
or SSDI. Participation in this program should operate
independently of the current CDR requirement for beneficiaries,
both in terms of timing and the evidentiary standard for future
eligibility.
Finally, NAMI urges that serious consideration be given to
adding protections for both the ticket and healthcare coverage
elements of a reform package so that consumers can seamlessly
move on and off of these programs. The episodic nature of
serious brain disorders such as schizophrenia, manic-depressive
illness, and major depression requires that these programs be
flexible enough to accommodate consumers who may experience
severe, though brief, episodes of acute illness.
6) Benefits for all Americans. Congress is poised make
important improvements in Social Security's disability programs
that will enable SSDI and SSI beneficiaries to work to the
greatest extent of their abilities. It is important for SSA
disability programs to begin the process of evolving from their
original purpose of serving as early retirement programs for
injured workers. They must start moving toward including a new
purpose of supporting individuals with disabilities in the
workforce. In this way SSA's disability programs can be
transformed from a safety net into a trampoline so that they
not only catch people with disabilities as they fall out of
work, but also give them a boost back into work when they are
ready.
These reforms have the potential to be a win-win situation
for all Americans. It can help beneficiaries by enabling them
to return to or enter the workforce as wage earners. It can
help employers by adding skilled workers to the labor pool. It
can help employment service providers by enabling them to serve
more participants. Finally, reform offers tremendous long-term
potential benefit for taxpayers by assisting workers with
disabilities to begin, or continue, paying taxes.
Conclusion
Mr. Chairman, millions of people like me who live with a
serious brain disorder are able to work and be productive. We
are taxpaying members of our communities. With access to
effective treatment through healthcare coverage, people with
severe mental illnesses who are on the SSI and SSDI rolls can
move toward greater independence. Unfortunately, the current
structure of the system, including both the pervasive work
disincentives in the SSDI program and the unresponsive nature
of the state-federal VR program, make work a frequently
unachievable goal. Put simply, the current system is hostile
toward work for people who can and want to work, but whose
disability prevents them from moving rapidly and permanently to
full employment. More important, the system has the perverse
effect of trapping people in poverty. The status quo cannot
remain in place if we are to achieve the important national
goal of full participation and integration into the mainstream
of American society for all people with disabilities.
Finally, work and independence are also vital to our
ongoing efforts to eradicate the stigma that is so closely
associated with severe mental illnesses. Reform of these
outdated and unfair programs will continue the path of progress
Congress established with the ADA and the MHPA. Thank you for
this opportunity to share NAMI's views on this important
legislation.
Chairman Shaw. Thank you for being here.
Mr. Carlisle.
STATEMENT OF JEFFREY E. CARLISLE, PRESIDENT, NATIONAL
ASSOCIATION OF REHABILITATION PROFESSIONALS IN THE PRIVATE
SECTOR
Mr. Carlisle. Chairman Shaw, Ranking Member Matsui, and
Members of the Subcommittee, on behalf of the National
Association of Rehabilitation Professionals in the Private
Sector, NARPPS, I thank you for allowing me to testify.
I am here as the current president of NARPPS to provide our
analysis and comments on Social Security reform and barriers
which prevent disability beneficiaries from returning to work.
My education is in rehabilitation counseling, and I am a
certified rehabilitation counselor, case manager, and
disability analyst. I have worked in the field of
rehabilitation for approximately 25 years with 19 of those as a
private practitioner. As such, I am often called upon by the
Social Security Administration to serve as a vocational
rehabilitation expert in SSI and SSDI determination hearings.
Representatives of NARPPS have had the honor of testifying
before this Subcommittee in the past, and I would like to thank
the former Chairman of this Subcommittee, now-Senator Jim
Bunning, for all of his work on this issue.
Our primary goals are to limit the impact of disability, to
restore the individual to the maximum level of functioning
possible, and to return individuals with disabilities to
suitable and gainful employment.
NARPPS believes that there are three main barriers from
preventing Social Security beneficiaries from returning to
work: The cash cliff, the fear of losing health care, and the
inability to choose a private-sector or public-sector
vocational rehabilitation provider.
We believe the consumer is the expert on the cash cliff and
about what health care he or she needs in order to make it
easier to return to work. However, we also strongly believe
that continuation of health care significantly enhances an
individual's chance for successful and long-term employment. As
for choice, we believe any legislation to remove these barriers
must contain a means by which a consumer can utilize the
services of the private sector, or specifically, a ticket to
work.
A ticket program would provide the consumer with a choice
over who their service provider is, and it will motivate
providers to deliver cost-effective, timely, and results-
oriented services to that consumer. However, for the ticket
program to be successful, we also believe that it must contain
certain safeguards.
We recommend the inclusion of milestone payments at two
significant levels of progress achieved prior to actual
placement of the individual. Such payments will make it
possible for more qualified providers to participate in the
program. Without milestone payments, smaller providers could
not participate because of the tremendous burden of having to
be capitalized until the recipient has been placed and employed
for a number of months.
NARPPS agrees with SSA and believes there is a need for the
program to be open ended without being reauthorized. To include
a reauthorization date may prevent a significant number of
beneficiaries and providers from getting involved, if they have
reason to believe that such a program could be eliminated, or,
at the very least, interrupted for a period of time.
We believe that any phase-in sites for the ticket program
should be chosen by the SSA Commissioner with special
consideration given to past demonstration projects and in
consultation with providers and consumers who have participated
in these programs.
Finally, we support the creation of an advisory panel made
up of all the sectors impacted by and participating within this
program which can assist the Social Security Administration
with the evaluation of project effectiveness and with
recommendations to the President and Congress. We welcome the
inclusion of State vocational rehabilitation agency
participation, and we believe the public and private-sector
rehabilitation professional can form an effective partnership
to deliver this much needed service to the disability
beneficiary. Already in many parts of the country, State
vocational rehabilitation agencies contract with the private-
sector rehabilitation provider to provide the initial
evaluation of an applicant, and, likewise, the Social Security
Administration contracts with private-sector rehabilitation
counselors to serve as vocational experts at SSI and SSDI
hearings.
Now, it will be critical for the service provider to have
substantial expertise and experience within the field of
vocational rehabilitation, employment, case management, and
other support services. NARPPS actively enforces standards and
ethics which meets this criteria.
In conclusion, before us is a significant and exciting
opportunity to help the disability beneficiary return to work,
resume truly productive lives, and enhance one's self-
sufficiency. We welcome the opportunity to provide these
return-to-work services to Social Security disability
beneficiaries and to work further with the Subcommittee to help
make this a reality.
On behalf of NARPPS and myself, I thank you for the
opportunity to meet with you and to provide this testimony
today.
Thank you very much.
[The prepared statement follows:]
Statement of Jeffrey E. Carlisle, President, National Association of
Rehabilitation Professionals in the Private Sector
Chairman Shaw, Ranking Minority Member Matsui and members
of the Subcommittee, on behalf of the National Association of
Rehabilitation Professionals in the Private Sector, NARPPS, I
thank you for allowing me to testify before you today. I am
here as the current President of NARPPS to provide our analysis
and comments on Social Security reform and barriers which
prevent disability beneficiaries from returning to work. I will
focus my remarks primarily on how the private sector can play a
significant role in the effort to return Social Security
recipients with disabilities back to meaningful employment.
My education is in rehabilitation counseling and I am a
certified rehabilitation counselor, case manager, and
disability analyst. I have worked in the field of
rehabilitation for approximately twenty-five years, with
nineteen of those as a private practitioner. For the past five
years, I have been a partner in my current place of employment
which is located in the New Orleans, Louisiana area. As such, I
am often called upon by the Social Security Administration
(SSA) to serve as a vocational rehabilitation expert in SSI and
SSDI disability determination hearings.
Representatives of NARPPS have had the honor to testify
before this Subcommittee in the past, and I would like to thank
the former chairman of this Subcommittee, now Senator Jim
Bunning, for all his work on this issue. Our membership,
approximately 3,200 in number, includes vocational
rehabilitation counselors, nurse case managers and allied
health professionals. Our membership consists of individuals
who are private practitioners, business owners, and employees
of regional or national organizations. Our primary goals are to
limit the impact of disability, restore the individual to the
maximum level of functioning possible, and return individuals
with disabilities to suitable and gainful employment.
NARPPS believes that there are three main barriers
preventing Social Security beneficiaries from returning to
work; the cash cliff, the fear of losing health care, and the
inability to choose a private sector, or public sector,
vocational rehabilitation provider. NARPPS believes that
consumers are the experts on the cash cliff and on what health
care he or she needs in order to make it easier to return to
work. However, we do believe that the continuation of health
care significantly enhances an individual's chance for
successful and long-term employment. As for choice, we believe
that any legislation to remove these barriers must contain a
means by which a consumer can utilize the services of the
private sector, or specifically, a ``ticket to work.''
A ticket program would provide the consumer with a choice
over who their service provider is, and it will motivate
providers to deliver cost-effective, timely, and results-
oriented services to that consumer. The ticket will create a
natural weeding-out process of those providers who fail to
deliver a high standard of service to the consumer. However,
for the ticket program to be successful, it must contain
certain safeguards.
We recommend the inclusion of milestone payments
at two significant levels of progress achieved prior to actual
placement of the individual. Such payments will make it
possible for more qualified providers to participate in this
program. Without milestone payments, smaller providers could
not participate because of the tremendous burden of having to
be capitalized until the recipient has been placed and employed
for a number of months.
NARPPS believes that there is a need for the
program to be open ended without being reauthorized. To include
a reauthorization date may prevent a significant number of
beneficiaries and providers from getting involved if they have
reason to believe that such a program could be eliminated, or
at the very least, interrupted for a period of time.
We believe that any phase-in sites for the ticket
program should be chosen by the SSA Commissioner with special
consideration given to past demonstration projects and in
consultation with providers and consumers who have participated
in these programs. Together with providers and consumers, the
Social Security Administration will be in a good position pick
such sites.
Finally, we support the creation of an advisory
panel made up of all of the sectors impacted by and
participating within this program, which can assist the Social
Security Administration with evaluation of project
effectiveness and with recommendations to the President and
Congress.
We welcome the inclusion of state Vocational Rehabilitation
(VR) agency participation. These agencies have developed over
the years an effective model for evaluation and service
delivery. Individual counselors who work in that setting are
extremely dedicated. Many private sector individuals got their
start with a state VR agency. The private sector likewise has
developed an effective model for evaluation and service
delivery which also has the added component of bottom-line
results and payment from our referral sources. We believe that
the public and private sector rehabilitation professional can
form an effective partnership to deliver this much needed
service to the disability beneficiary.
Already, in many parts of the country, state VR agencies
contract with the private sector rehabilitation provider to
provide the initial evaluation of an applicant. Likewise, the
Social Security Administration contracts with private sector
rehabilitation counselors to serve as vocational experts at SSI
and SSDI hearings. In addition, the Department of Veterans
Affairs, Vocational Rehabilitation Agency, contracts with
private sector rehabilitation providers to conduct the initial
evaluation of veterans and to recommend a vocational
rehabilitation plan for those who have applied for
rehabilitation benefits. As I stated earlier, I am fortunate to
be one who provides these services to the Social Security
Administration and also the Department of Veterans Affairs.
It will be important for the service provider to have
substantial expertise and experience within the fields of
vocational rehabilitation, employment, case management, and
other support services. NARPPS has published Standards and
Ethics by which each member is required to abide. They are
subject to peer review and are a condition of membership.
NARPPS has a Standards Compliance Review Board for peer review
functions. In addition, the typical NARPPS member has board
certification in one or more areas on a national level, and
because of certain state requirements, must be licensed to
practice vocational rehabilitation in certain areas of the
country.
Before us is a significant exciting opportunity to help
disability beneficiaries return to work, resume truly
productive lives, and enhance one's self sufficiency. The
private sector rehabilitation professional has enjoyed this
opportunity in many other arenas which deal with disability. We
welcome the opportunity to provide these return to work
services to Social Security disability beneficiaries and to
work further with the Subcommittee to help make this a reality.
On behalf of NARPPS and myself, I thank you for the
opportunity to meet with you and to provide this testimony
today. I would be happy to answer questions at the appropriate
time.
Chairman Shaw. Thank you.
Mr. Hulshof.
Mr. Hulshof. Thank you, Mr. Chairman.
First of all, I thank each one of you for being here with
your very powerful testimony about what you each have
encountered, so thank you for being here and helping to
enlighten us.
Rich, a couple of things--you talked about--and I wasn't
aware, really, to the significant degree of the confusion that
is caused by having to give different answers to the very
simple question, Can you work? What recommendations, if any, do
you have to correct that anomaly, if you will?
Mr. Blakley. First of all, I think the Social Security
Administration and local State vocational rehabilitation
agencies need to work closer together. There needs to be some
sort of way for them to connect and to stop making people give
different answers. What that would be precisely is something
that I can't answer right now. I would like to give some
thought on it, but I think it is something that can be fixed.
At this point in time, I am not exactly sure what it would be.
Mr. Hulshof. The other question I would have of you, Rich,
and really anybody on the panel that wishes to answer, feel
free, but I know especially because of your background having
been both in Missouri and in Illinois--and as your written
testimony pointed out, there are differences between State
policies that affect people with disabilities. You talk about a
necessity for a national self-directed care program. Do you
have any suggestions or recommendations on implementation of
this or other policies we might want to pursue on a nation-wide
basis?
Mr. Blakley. Very much so.
I like the mi casa bill which is a policy which is being
promoted by the national ADAPT. Mi casa would be a national
attendant-care program.
Right now, depending on what State you live in, either you
get attendant care or you don't. When I moved from Illinois to
Missouri, it was sticker shock. In Illinois, I made
approximately the same as I made in Missouri monetarily, and
the State paid $650 in attendant care. I paid a $50 copayment.
I moved to Missouri, and there was nothing. I had to get a
roommate and offer free room and board for an attendant. It was
not an ideal situation. It was very, very difficult, and it
still is. Missouri is lagging behind Illinois and Kansas in
that respect, and we have told people that live along the
border, when they call our office and ask, What should we do?
we have actually said that they may want to move across the
river or across the border to receive attendant care, and that
is a shame.
Mr. Hulshof. Anybody else have a comment on that question?
Mr. McNulty. I would just like to make one brief point
analogous to the personal care attendant situation. For people
with mental illness, very often our lifeline to being able to
work is medication, and, unfortunately, most of the medications
that are effective are very new, and they are very expensive,
and Medicare currently has no provision to pay for those, but
it does under Medicaid.
Different States do have different policies, but people run
into sticker shock if they move from one State to another even
within New England. They find that if you move from Rhode
Island to one of the other States--I don't want to name any--
you might find that a medication that is paid for in Rhode
Island is not paid for in another State which means that you
would have to go to one of the old-style, antipsychotic
medications which are inexpensive, but they also have such
terrible side effects which is why people very often stop
taking them.
So, it is one of those penny-wise, pound-foolish kind of
things that does mandate, I think, a more rational policy.
Mr. Carlisle. On a related matter, I have found that there
are differences from State to State just in terms of
eligibility for vocational rehabilitation services on the State
level.
For example, in a State like Louisiana, because of some
funding issues, they are only accepting the most severely
disabled individual for vocational rehabilitation services,
whereas, the State of Mississippi allows them to accept a wider
population of individuals.
Mr. Hulshof. I appreciate that--I'm sorry?
Ms. Gennaro. I also just wanted to chime in that they might
possibly do a great deal in the area of attendant services and
supports. We are hoping that another bill similar to the mi
casa bill will be introduced that more clearly indicates what
it will cover and it will really help the situation out
tremendously.
Mr. Hulshof. Again, thanks very much, each of you, for
being here.
Mr. Chairman, my time has expired, and thank you again.
Chairman Shaw. Surely.
Mr. Matsui.
Mr. Matsui. Thank you, Mr. Chairman.
I would just like to thank the panel. I think their
testimony was very revealing and helpful to me, and I hope to
others as well. I thank all four of you.
Chairman Shaw. Mr. Doggett.
Mr. Doggett. Ms. Gennaro, I think you addressed this
critical health insurance matter in your testimony. Is it your
belief that unless we address the health insurance issue in the
manner that the bipartisan Senate bill has done, that, for most
individuals with disabilities who are out there and who would
like to go back into the work force, we really will have
essentially just given them a ticket to no where?
Ms. Gennaro. Yes, that is true.
The Senate bill recognizes the need to let people trust
that the Medicare coverage is going to be there when they need
it--not a limited coverage that will go a few years more for
you because the risk still is there for them in terms of what
exactly they will need down the line, I have been successful
with my employment but my disability is still there and I have
critical needs. Yes, we will have false expectations for
people.
And also we will have said that we will have made
tremendous improvement in employment, and that really won't
happen because people won't be able to use the ticket as they
could. It will be a lost opportunity.
Mr. Doggett. Or to put my same question another way, if all
this House does in this session of Congress is the little that
it did last time in approving--and I voted for it along with, I
think, all but one Member of the House who voted that day--but
if all we do is this very limited, narrow type of ticket to
work bill that was considered last session, we may create the
illusion of progress, but in terms of really making a
difference in the real-life struggle of most people with
disabilities, we will have done very little.
Ms. Gennaro. That is true, unfortunately.
Mr. Doggett. Mr. McNulty, do you agree with that?
Mr. McNulty. Absolutely, Mr. Doggett, I do. It is
unfortunate, but without health insurance people can't work.
Our lives are dependent on our health, everyone's is, but we
are just more aware of it than most people because we are
confronted with it every day.
Mr. Doggett. Mr. Blakley do you agree with that?
Mr. Blakley. Yes, I do, and one thing I am really concerned
about is the Medicare Program. You say Medicare to people and
what you think about is senior citizens you don't think about
people with disabilities. Ask anybody on the street, and they
will say that Medicare equates seniors. Maybe it should be
pulled out of the Medicare's purview and a new innovative
program set up for people with disabilities to receive health
insurance.
Mr. Doggett. Mr. Carlisle, I know that your focus has been
on the very important issue of vocational rehabilitation, but
you see these health insurance issues come up also. Do you
agree with that?
Mr. Carlisle. Oh, yes, sir, absolutely. When we are working
with an individual and placing them back into employment, a
primary consideration is benefits, bottom line and most
importantly the issue of health care. And there are any number
of times when we have been working with individuals that have
all the qualifications necessary for the job, are extremely
interested in it, but because of the virtual lack of health
care available to them, they simply can't take the job.
Mr. Doggett. Well, thank you very much. Yes, ma'am?
Ms. Gennaro. If I could just chime in for a moment.
I wanted to say that it is really not necessary to remove
the disability Medicare Program from the Medicare Program. That
would be a mistake. We need to just educate people to
understand that Medicare covers a range of needs amongst all
peoples.
Mr. Doggett. Thank you very much, and I hope we can do more
than just pass a bill with a nice sounding name but really make
some progress that will make a difference to you and to the
many people that you represent. Thank you for what you are
doing for people with disabilities.
Mr. Carlisle. Thank you.
Ms. Gennaro. Thank you.
Mr. Blakley. Thank you.
Mr. McNulty. Thank you.
Chairman Shaw. I have one question for Mr. Carlisle. One of
your recommendations for the ticket-to-work program was the
inclusion of milestone payments for significant levels of
progress achieved in given cases. Why are milestone payments so
important, and what would be the impact on the number of
providers participating if milestone payments were not a part
of any program?
Mr. Carlisle. To me, sir, the milestone payments are
critically important because, more so than not in our country
these days, private-sector rehabilitation providers are smaller
companies. They may be one or two individuals, or perhaps a
handful of individuals, but we are seeing the days of the large
corporate entities which provide rehabilitation services going
away, and, for a company to be able to really provide this type
of service in our opinion, there needs to be some milestone
payments along the way in the overall administration of the
vocational rehabilitation plan. And I think that it is
important to add for the record, we in no way see the level of
milestone payments as being really profitable for the company,
but basically helping to just cover their expenses, or perhaps
a little less than that, and there are any number of companies
in our country today that simply could not afford to spend
thousands upon thousands of dollars with the only opportunity
for payoff coming once the person is gainfully employed for 9
months. It is just clear to me, as the current president of
NARPPS from comments that I have received from our members
around the country and those outside our organization, that, if
a milestone payment is only occurring at the time of placement
or after 9 months of employment, people are simply not going to
choose to get involved in the program.
Chairman Shaw. Thank you.
I want to thank, again, all the witnesses, as the other
Members have. You have contributed, particularly, with your
personal testimony as to what you have encountered and what you
have overcome. It is particularly important to this
Subcommittee in the drafting of legislation. We thank each and
every one of you.
This does conclude the hearing. We were fortunate that we
weren't interrupted by another vote. I appreciate all of you
being here, and I appreciate the participation of the Members
up here on the dais.
Thank you.
The hearing is adjourned.
[Whereupon, at 12:52 p.m., the hearing was adjourned.]
[Submissions for the record follow:]
Statement of John Rio, Corporation for Supportive Housing, New York,
New York
Chairperson Shaw, members of the Subcommittee on Social
Security, my name is John Rio and I am a Project Coordinator
with the Corporation for Supportive Housing's employment
initiative. The Corporation for Supportive Housing, or CSH, is
a nonprofit national intermediary founded by 3 of Americas
leading private foundations--the Pew Charitable Trust, the
Robert Wood Johnson Foundation and the Ford Foundation to
increase the supply and quality of supportive housing in the
United States. Supportive housing is a solution to homelessness
offering people affordable housing with on-site supportive
services including social services and employment services. An
array of supportive services voluntarily accessed by tenants is
a first-line strategy in helping people pursue self-determined
goals in our housing projects.
CSH believes that supportive housing provides not only the
opportunity to decrease homelessness but offers tenants a
stable platform for developing self-sufficiency. Since our
founding in 1991, CSH has created partnerships in 9 locations
around the country with 184 nonprofit agencies who have
developed more than 8,000 supportive housing apartments across
the U.S. CSH has raised over $80 million in philanthropic and
public funding sources to help our partners build supportive
housing and have also placed $144 million in gross equity in
supportive housing projects totaling 2,864 units through
syndication of Low Income Housing Tax Credits in partnership
with the National Equity Fund.
The tenants of supportive housing are individuals with
histories of homelessness frequently complicated by severe
disabilities including mental illness, substance abuse, HIV/
AIDS and other medical conditions as well as chronic poverty or
histories of incarceration. Although of late the need for
supportive housing among families has become apparent, most of
the supportive housing population is single adults or non-
custodial parents. More than 50% of the supportive housing
population are beneficiaries of the Social Security disability
programs.
I am sure that each of you has heard what people with
disabilities want. It should come as no surprise that they want
what most citizens in America wanta safe affordable place to
live and a job that you like and that pays and, of course,
health care.
Within supportive housing the majority of those tenants
receiving Social Security disability benefits are individuals
with mental illness who face multiple barriers to employment
including poorly integrated employment services in our
communities across America. People with mental illness have a
greater chance of being re-hospitalized for their illness than
landing a living wage job! Tenants of supportive housing want
to work and we have the technology to help them but, the losses
people fear and experience substantially challenge our efforts
in the Social Security disability and the Vocational
Rehabilitation systems. Individuals with psychiatric
disabilities should not be left out of workforce development
systems. But they will be, if your leadership does not reform
existing law and make good on a federal policy that helps all
Americans work, even those with severe disabilities.
While there are significant barriers in the employment and
entitlement systems serving formerly homeless tenants of
supportive housing, we think you should hear about things that
work and show potential. In 1995 the Rockefeller Foundation
funded an employment initiative at CSH called Next Step:
Jobs.'' In this project 21 non-profit supportive housing
agencies partnered with CSH to increase the rates of employment
among individuals in supportive housing with multiple barriers
to employment. Our research \1\ shows that supportive housing
offers the basic critical ingredients for positive vocational
outcomes, that is continuous case management, permanent housing
and a culture supportive of working tenants. In the first two
years of this project more than 1,000 tenants went to work. We
invite you, Chairman Shaw, and members of the Committee to look
more closely at this strategy during your inquiry.
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\1\ Proscio, T. (1998). Work in Progress 2; An Interim Report on
next Step: Jobs. A report to the Corporation for Supportive Housing and
Rog. D., Holupka, S.C., Brito, C.m., Storm, A., Hopper, K., Roy, K.,
Davidson, C. and Lester, R. (1998). Next step: Jobs Second Evaluation/
Documentation Report. June.
---------------------------------------------------------------------------
Despite the creativity and flexibility in our
demonstration, the disincentives in our nation's entitlement
systems pose significant barriers to people with disabilities
who want to work. I would like to take this opportunity to tell
you some of what we have heard though our national employment
initiative. I would also like to note our observations
regarding the Work Incentives Improvement Act.
Two dominant themes persist in the experience of both
providers of employment services and for the tenants they help.
First, the very nature of the Social Security work incentives
are too complex and second, the rules do not support a safety
net for people with long term episodic illnesses in which an
``easy on; easy off'' access mechanism would encourage work.
People make rational choices and, in general, people will
prefer to work, if it is to their financial benefit and if the
health risks of going to work are minimized. The chronic and
intermittent nature of mental illness or HIV/AIDS mean that
people living with these illnesses may be well enough to work
for months or even years at a time with needed supports. At
other times, an acute episode of illness makes it impossible
for individuals to meet the demands of work. People with these
illnesses (who want to work and can work) do not fit into an
entitlement system based upon a case-open/case-closed design.
In the system we have in place today, tenants of supportive
housing are making the rational decision to minimize their
health care risks and maximize their income by staying on the
SSA rolls by either deliberately limiting their earned income
or by not working at all. Any reform of the SSA disability
program should make flexibility paramount in the design to
promote employment. Such flexibility would support work when
people with disabilities can work and provide sustenance when
disabling conditions impair work ability.
Ticket to Independence
The Ticket has been heralded as a key feature of Social
Security Disability reform and we concur that it has the
potential to offer people with disabilities new opportunities.
People with disabilities believe that the Ticket will give them
a choice of vocational rehabilitation providers whereas in the
current system, the State vocational rehabilitation agency is
the only provider. We support the concept of increasing choices
and your efforts to give people with disabilities a choice in
whom they go to for help.
However, we foresee limitations in the Ticket program as it
is currently constructed which are likely to dash the hopes of
so many of us. The Ticket program is likely to only serve those
with fewer, less severe barriers to employment and we will, yet
again, leave behind those who need us most. The Ticket
encourages providers to help only those who are likely to be
able to sustain employment with the least amount of service.
There are no provisions to direct or encourage providers to
help those with severe and episodic impairments such as
individuals with mental illness. This is not a program to help
Social Security beneficiaries who are formerly homeless
individuals with mental illness, HIV/AIDS or other chronic
medical conditions.
Nor does the Ticket fairly share the cost savings and
program expenses when a vocational service provider helps a
beneficiary work and leave the SSA rolls. Under the best of
circumstances in which a person with an SSDI benefit of $700 a
month leaves the Social Security cash benefits program due to
earnings and works continuously for five years, a provider
would receive a total of $16,800. This amounts to an annual
payment claim of $3,360 to a provider. In FY 1997 the SSA
reimbursed the State vocational rehabilitation agencies for
their costs that averaged $10,700 per claim to help individuals
with disabilities sustain work for 9 months!
Both the milestone and outcome payment systems perpetuate
the all or nothing feature of the SSA disability program that
has kept people from jobs. Some beneficiaries will give up
their cash benefits and leave the rolls but more are able to
work with a reduced reliance on SSA cash benefits. There is no
structure in the Ticket for beneficiaries to access their
choice of vocational rehabilitation providers when their
ability to work is less than what is needed to leave the rolls.
In other words the ticket does not pay for those who through
earned income can reduce their reliance on cash benefits but
who cannot work at the level needed to leave the rolls
entirely.
The Work Incentives Improvement Act should provide the
Commissioner of Social Security the authority to maximize the
participation of community based vocational rehabilitation
agencies in the Ticket program for our population.
Work Incentives and Entitlement Counseling
The current system of work incentives have become an
entangled web that holds people back from working rather that
acting as a safety net of support should a work attempt not
succeed. The complexities of Social Security work incentives
has become so confusing that it is very common to request
information from that agency and receive different answers to
the same questions. Such confusion has resulted in the fact
that beneficiaries do not take advantage of such programs as
the Plan for Achieving Self-Support. Two years ago there were
some 10,000 PASS plans in effect. Today there is only 3,000
PASS plans. We need simpler incentives and benefits counselors
that can help people with disabilities access these incentives
to maximize their employment potential.
Current entitlement counseling in supportive housing
focuses on helping tenants get on and maintain Supplemental
Security Income and/or Social Security Disability Insurance
benefits. Most service staff is unfamiliar with the current
work incentive provisions and is not aware of proposed changes.
Legislation that improves the availability of experts in work
incentives and entitlement counseling is much needed
legislation. From our point of view, we need to build upon the
talents of supportive housing case managers and employment
staff to upgrade their capabilities to help tenants manage the
entitlement system, work more and rely less upon the Social
Security disability program. Work incentives and entitlement
counseling are core services needed by beneficiaries and best
provided directly by community based organizations rather that
the SSA.
Health Care
When you ask people with disabilities the question ``Why
aren't more people with disabilities working?'' they will tell
you it is about health care and about losing our benefits. The
Deputy Commissioner of SSA \2\ asked this question and was told
``when we get cash benefits, we also get access to Medicare and
Medicaid and we can't replace that no matter what we make. We
are uninsured and uninsurable in the private market. And we are
afraid that if we give up our cash benefits, we might have to
give up our health care, as well. And if we give up health
care, we might give up our lives. Even though many of us can
give up the cash and earn our way, we will never be able to
earn the kinds of services and supports we need that we get in
Medicare and Medicaid.'' Tenants of supportive housing have
echoed these concerns.
---------------------------------------------------------------------------
\2\ Susan M. Daniels, Ph.D., Deputy Commissioner for Disability and
Income Security Programs Social Security Administration, Opening
Session, Tapping Worker Potential through Technology Conference,
President's Committee on Employment of People with Disabilities, New
Orleans, Louisiana, May 6, 1998.
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Any Social Security work incentive reform must also address
the critical problem of health care for working disabled
individuals. The Balanced Budget Act of 1997 included a
provision in section 4733 that gave States the option to offer
a Medicaid buy-in for a new category of working disabled
participants. But, so far only the State of Oregon accessed
this option. Why is that? There are no incentives for the
States to step up to the plate. Local advocates will do their
job to bring attention to the needs of people with disabilities
who work but they will need your support to entice States to
establish health care coverage through a Medicaid buy-in. In
the great State of New York, Governor George Pataki expressed
his point of view saying, ``The challenge is clear: disabled
individuals in New York State want and deserve to work, and we
intend to see that they succeed in doing so. We want to enhance
access to employment for persons with disabilities, but for
this to happen, we need to build assurances into the system so
that persons with disabilities who collect SSI or SSDI can work
without fear of losing their health insurance and other
critical benefits.'' \3\
---------------------------------------------------------------------------
\3\ Press Release, Governor George Pataki, September 14, 1998,
Governor Seeks To Eliminate Employment Barriers For Disabled.
---------------------------------------------------------------------------
This Committee should include in their recommendations a
provision for health care so that people with disabilities who
want go to work but cannot get health care insurance coverage
(or coverage that will help them pay for treatment of their
impairments) can participate in the workforce of America. If we
expect States to adopt such options as Section 4733 in the
Balanced Budget Act of 1997, your recommendations must also
include help for the States finance their system of health care
for working disabled individuals. Allowing States to limit
their fiscal exposure while ramping up a Medicaid buy-in option
that sunsets after an implementation period should carefully be
considered. The Committee should consider limiting the number
of persons in the State's Medicaid buy-in program or limit its
application to certain areas of the State for a period of 3
years before making the option available Statewide. Your
influence will also be required to encourage the Health Care
Financing Administration to work proactively with the States to
efficiently and swiftly establish this health care provision.
Housing
Nowhere in the work incentives discussions has there been a
focus on the housing needs of individuals with disabilities. We
are concerned that if we do create Social Security and tax
based work incentives, many people with disabilities may run up
against disincentives in the housing programs. Many individuals
with disabilities rely on housing subsidies such as section 8
certificates through which individuals pay up to 30% of their
total income up to certain limits. When people with
disabilities in special needs housing go to work not only do
their rents go up; they also jeopardize the stability of their
housing.
We would like this Committee to direct the appropriate
federal agencies to investigate what housing-based or rent-
based work incentives can be made available to working disabled
individuals. The Quality Housing and Work Responsibility Act of
1998 made certain work incentive provisions available to
tenants of public housing. We would like these incentives to be
available to individuals in homeless housing and disability
housing programs.
Conclusion
People with disabilities want and can work, but they will
not do so if working means having less that they do now. The
provisions you include in the Work Incentives Improvement Act
can be the first steps toward encouraging more people to choose
and sustain employment. S.331 and HR 1180 offers such promise
and hope to thousands of Americans with disabilities.
[An attachment is being retained in the Committee files.]
March 11, 1999
Mr. A.L. Singleton, Chief of Staff
Committee on Ways and Means
U.S. House of Representatives
1102 Longworth House Office Building
Washington, D.C. 20515
Att: Congressman E. Clay Shaw, Jr., Chair, Subcommittee on Social
Security
Subj: Barriers Preventing Disability Beneficiaries From Returning to
Work
Dear Chairman Shaw and Members of the Social Security Subcommittee
Members of the San Francisco Bay Area Network on Disability (SF
BAND) wish to add our voices to the many asking for change in the
requirements of the Social Security Administration which prevent us,
and others across the country, from gainful employment. We are
encouraged by the strong support in the Senate of S. 331, the Work
Incentives Improvement Act of 1999, and ask that you pass similar
legislation in the House such that persons with disabilities may
actually see a positive change before the end of this century!
We are a group of over 100 persons with disabilities and their
friends in the San Francisco Bay Area who communicate daily over the
internet. We represent persons with disabilities who have many skills,
who contribute much to the lives of each other and of others. We are
fortunate in that we have computers and the requisite skills to use the
internet to support each other, to lobby for legislation that improves
our lives, to inform and educate ourselves about events that are of
concern to persons with disabilities, and to inform and educate the
nondisabled populace of our abilities and our humanity.
Clearly among us are many who would be able to refocus such skills
in productive, paying employment. Indeed, many business could use the
special skills which have been honed by the exigencies of life with a
disability and by the ability to problem-solve in ways that we have so
clearly demonstrated. Medical science and engineering have enabled us,
but without legislation such as you have supported with your action
last week, we must forgo all thoughts of becoming part of the work
force, and remain tax burdens rather than tax payers.
We encourage you now to take the courageous actions which will help
mainstream us as valuable and valued members of society as we move into
the new century.
Very Sincerely,
Jean Nandi, Chair,
San Francisco Network on Disability (SF BAND)
1529 Josephine St.
Berkeley, CA 94703-1168
U.S. House of Representatives
Committee on Ways and Means
Subcommittee on Health
March 11, 1999
The Honorable Clay Shaw
The Honorable Robert Matsui
Subcommittee on Social Security
Committee on Ways and Means
Washington, DC 20515
Dear Chair and Ranking Member:
Congratulations on holding today's hearing on barriers preventing
the disabled from returning to work.
I would like to request that my Statement of February--to the
Senate Finance Committee on ``Return to Work'' legislation be included
in your hearing record.
Specifically, the key barrier is lack of health insurance for those
returning to work, and improvements in Medicare and Medicaid can play a
key role in encouraging the disabled to return to work.
As my testimony indicates, we should give some special attention to
those with End Stage Renal Disease. There is tremendous potential to
help many of these patients to return to a more productive, satisfying
life.
Since my testimony to the Senate, I've had the chance to read an
article from the January, 1999 Journal of the American Society of
Nephrology entitled, ``Can Renal Replacement be Deferred by a
Supplemental Very Low Protein Diet?'' The answer is yes-by as much as a
year among motivated patients! We should amend this Return to Work
legislation to give Medicare the flexibility to cover such therapies to
delay the onset of dialysis, which would make it much easier for kidney
disease patients to maintain employment while saving Medicare money.
I look forward to working with you on this legislation to ensure it
achieves the maximum impact on improving the opportunities of the
disabled community.
Sincerely,
Pete Stark
Member of Congress
Attachments
Statement to Senate Finance Committee
Article entitled, ``Catch-22 for a Transplant''
Article entitled, ``Can Renal Replacement be Deferred by a
Supplemental Very Low Protein Diet?''
cc: Members of the Subcommittee on Social Security
Statement of Hon. Fortney Pete Stark, a Representative in Congress from
the State of California
Please Give Some Special Attention to E.S.R.D. Patients in the ``Work
Incentives Improvement Act of 1999''
Mr. Chairman:
I urge the Committee to give some special consideration to
helping End Stage Renal Disease patients return to work.
As you know, there are about 260,000 Americans on dialysis
and another 80,000 who are dependent on a kidney transplant
(with about 11,500 kidney transplants performed annually).
About 120,000 dialysis patients are of working age (between 20
and 64), yet, extrapolating from recent data, fewer than 28,000
are working--roughly 100,000 are not in the workforce. The
USRDS Abstract of Medical Evidence Reports, June 1, 1996 to
June 1, 1997, reports that 38.1% of all dialysis patients 18-60
years of age were employed full time, part time or were
students before onset of ESRD. 22.9% of ESRD patients in the
same age group were employed full time or part time or were
students after the start of dialysis. It is the 15% (38.1%
minus 22.9%) differential that is the prime hope for return to
work efforts.
Of the transplant patients, most (88%) are of working age,
and about half of these are working.
ESRD patients are extraordinarily expensive. They
constitute about 0.5% of all Medicare patients, yet use about
5%--about $11 billion--of the Medicare budget.
The promise of ESRD, and especially of transplantation, was
that it would enable people to live mainstream lives--and the
problem of rehab/return to work has long been a theme in
Congressional review of this program.\1\
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\1\ See testimony of HHS Inspector General Kusserow, in hearings
before the House Government Operations Committee, February 23, 1982, p.
20, when it was noted that only about one fourth of those with jobs
before the onset of ESRD continued employment, a figure which appears
not to have changed much over nearly twenty years. See also Ways and
Means Oversight Subcommittee hearing of June 24, 1975. At that time,
there were about 20,000 ESRD patients, generally clustered in the more-
employable cohort of 20 to 55 years of age, and it was estimated that
50% of the dialysis patients and 75% of the transplant patients were
working.
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Yet for many reasons, return to work has not been very
successful in this patient population. The 1991 landmark
Institute of Medicine study entitled Kidney Failure and the
Federal Government explains some of the reasons (see attached).
Section 102 of your bill provides Medicare coverage for
working individuals with disabilities--but ESRD dialysis
patients already have this protection. For transplant patients,
Medicare does not cover their major health need--coverage of
$8,000-$10,000 per year for immuno-suppressive drugs--after 36
months.
Clearly, we should tailor some special provisions to this
population.
I would like to suggest a series of ESRD return-to-work
amendments that would save total government revenues in the
long run. While these proposals may increase Medicare spending,
they would reduce Social Security disability and Medicaid
spending.
These are just preliminary ideas, and I hope that you and
the renal community could refine these ideas prior to mark-up.
1) A huge percentage of ESRD patients qualify for Medicaid.
The disease is so expensive ($40-$60,000 per patient per year)
and the out-of-pocket costs so high that it impoverishes many.
For transplant patients, the cost of life-saving immuno-
suppressive drugs alone can be $8,000, $10,000 or more per
year. No wonder many are tempted to avoid actions which would
disqualify them for help.
As part of general Medicare policy, I have always thought
that we should cover pharmaceuticals and, in particular,
indefinitely cover immuno-suppressives. It is maddening to hear
the stories of $80,000-$100,000 kidney transplants lost,
because a patient couldn't afford the $10,000 per year of
medicine.
I think a good case can be made to add to this bill
coverage of immuno-suppressives indefinitely, to encourage
people to leave Medicaid/Disability and return to work.
2) Some ESRD facilities do a good social work job helping
patients return to work. Others don't seem to even try. We
should honor and reward those centers which, on a risk adjusted
basis, are doing the best job of rehab in their renal network
area.
The honor could be as simple as a Secretarial award of
excellence and public recognition.
The reward could be something more tangible--a cash payment
to the facility for each patient of working age who does not
have severe co-morbidities which the center is able to help
return to work (above a baseline--perhaps 5% of eligible
patients). For example, if a center had 100 working age
patients, it could receive a $1000 payment for each patient
above 5 who had lost employment and is helped to return to
work. This would be a phenomenally successful investment and
would partially compensate the dialysis center for the cost of
vocational rehab and social work.
3) Renal dialysis networks, which are designed to help
ensure ESRD center quality, should be able to apply for
designation as rehab agencies and for demonstration grants
under this legislation.
The law spelling out the duties of Networks has a heavy
emphasis on rehabilitation. Indeed, it is the first duty
listed:
``...encouraging, consistent with sound medical practice, the
use of those treatment settings most compatible with the
successful rehabilitation of the patient and the participation
of patients, providers of services, and renal disease
facilities in vocational rehabilitation programs;'' \2\
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\2\ Sec. 1881(c)(2)(A); see also (B) and (H).
I suspect that the 17 Networks vary widely in their
emphasis on rehabilitation. Again, the Network(s) that do the
best should receive recognition and share their success with
the others.
4) Kidney failure remains a medical mystery. It often
happens very quickly, with no warning. But for thousands of
others, there is a gradual decline of kidney function. I am
told by medical experts that in many cases the descent to
terminal or end-stage renal disease can be slowed by (1)
nutrition counseling, or (2) medical treatment by nephrology
specialists.
I hope that you will make it clear that the Medicaid (or
Medicare) funds provided in this program to prevent disability
could be used to delay the on-set of the devastatingly
disruptive and expensive ESRD. Monies spent in this area would
return savings many times over.
Also in the 'preventive area,' some of the leaders in the
renal community are reporting exciting results from more
frequent, almost nightly dialysis. Like frequent testing by
diabetics for blood sugar levels, it may be that more frequent
dialysis can result in a less disrupted life and a better
chance to contribute to the workforce. We should watch these
medical developments and if there is a chance that some
additional spending on more frequent, but less disruptive
dialysis would encourage return to work, we should be
supportive.
5) Finally, I urge you to coordinate this bill with another
proposal of the Administration--skilled nursing facility
employment of aides to help with feeding. As you know, last
summer we received a GAO report on the horror of malnutrition
and death by starvation in some nursing homes, due to a lack of
staffing to take the time to help patients who have trouble
eating and swallowing and who take a long, long time to eat
(e.g., many stroke patients). A coordinated effort by the
nursing home industry and ESRD centers to fill this minimum
wage type position would help nursing home patients while
starting many long-out-of-work ESRD patients back on the road
to work.
Mr. Chairman, these are just a few, quick ideas. I am sure
that experts in this field could suggest other steps to ensure
that the ESRD program not only saves lives, but helps people
have a good and productive life. Thank you for your
consideration.
[Attachments are being retained in the Committee files.]