<DOC>
[106th Congress House Hearings]
[From the U.S. Government Printing Office via GPO Access]
[DOCID: f:55643.wais]
THE WORK INCENTIVES IMPROVEMENT ACT OF 1999
=======================================================================
HEARING
before the
SUBCOMMITTEE ON
HEALTH AND ENVIRONMENT
of the
COMMITTEE ON COMMERCE
HOUSE OF REPRESENTATIVES
ONE HUNDRED SIXTH CONGRESS
FIRST SESSION
on
H.R. 1180
__________
MARCH 23, 1999
__________
Serial No. 106-15
__________
Printed for the use of the Committee on Commerce
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COMMITTEE ON COMMERCE
TOM BLILEY, Virginia, Chairman
W.J. ``BILLY'' TAUZIN, Louisiana JOHN D. DINGELL, Michigan
MICHAEL G. OXLEY, Ohio HENRY A. WAXMAN, California
MICHAEL BILIRAKIS, Florida EDWARD J. MARKEY, Massachusetts
JOE BARTON, Texas RALPH M. HALL, Texas
FRED UPTON, Michigan RICK BOUCHER, Virginia
CLIFF STEARNS, Florida EDOLPHUS TOWNS, New York
PAUL E. GILLMOR, Ohio FRANK PALLONE, Jr., New Jersey
Vice Chairman SHERROD BROWN, Ohio
JAMES C. GREENWOOD, Pennsylvania BART GORDON, Tennessee
CHRISTOPHER COX, California PETER DEUTSCH, Florida
NATHAN DEAL, Georgia BOBBY L. RUSH, Illinois
STEVE LARGENT, Oklahoma ANNA G. ESHOO, California
RICHARD BURR, North Carolina RON KLINK, Pennsylvania
BRIAN P. BILBRAY, California BART STUPAK, Michigan
ED WHITFIELD, Kentucky ELIOT L. ENGEL, New York
GREG GANSKE, Iowa THOMAS C. SAWYER, Ohio
CHARLIE NORWOOD, Georgia ALBERT R. WYNN, Maryland
TOM A. COBURN, Oklahoma GENE GREEN, Texas
RICK LAZIO, New York KAREN McCARTHY, Missouri
BARBARA CUBIN, Wyoming TED STRICKLAND, Ohio
JAMES E. ROGAN, California DIANA DeGETTE, Colorado
JOHN SHIMKUS, Illinois THOMAS M. BARRETT, Wisconsin
HEATHER WILSON, New Mexico BILL LUTHER, Minnesota
JOHN B. SHADEGG, Arizona LOIS CAPPS, California
CHARLES W. ``CHIP'' PICKERING,
Mississippi
VITO FOSSELLA, New York
ROY BLUNT, Missouri
ED BRYANT, Tennessee
ROBERT L. EHRLICH, Jr., Maryland
James E. Derderian, Chief of Staff
James D. Barnette, General Counsel
Reid P.F. Stuntz, Minority Staff Director and Chief Counsel
______
Subcommittee on Health and Environment
MICHAEL BILIRAKIS, Florida, Chairman
FRED UPTON, Michigan SHERROD BROWN, Ohio
CLIFF STEARNS, Florida HENRY A. WAXMAN, California
JAMES C. GREENWOOD, Pennsylvania FRANK PALLONE, Jr., New Jersey
NATHAN DEAL, Georgia PETER DEUTSCH, Florida
RICHARD BURR, North Carolina BART STUPAK, Michigan
BRIAN P. BILBRAY, California GENE GREEN, Texas
ED WHITFIELD, Kentucky TED STRICKLAND, Ohio
GREG GANSKE, Iowa DIANA DeGETTE, Colorado
CHARLIE NORWOOD, Georgia THOMAS M. BARRETT, Wisconsin
TOM A. COBURN, Oklahoma LOIS CAPPS, California
Vice Chairman RALPH M. HALL, Texas
RICK LAZIO, New York EDOLPHUS TOWNS, New York
BARBARA CUBIN, Wyoming ANNA G. ESHOO, California
JOHN B. SHADEGG, Arizona JOHN D. DINGELL, Michigan,
CHARLES W. ``CHIP'' PICKERING, (Ex Officio)
Mississippi
ED BRYANT, Tennessee
TOM BLILEY, Virginia,
(Ex Officio)
(ii)
C O N T E N T S
__________
Page
Testimony of:
Auerbach, Roger, Administrator, Oregon Seniors and Disabled
Services Division.......................................... 48
Bangsberg, T. Jeff, Interim Public Policy Director, Courage
Center..................................................... 23
Bergman, Allan I., President and CEO, Brain Injury
Association................................................ 37
Cooley, Steven R., Fellow, American Board of Disability
Analysts................................................... 45
Deeley, Harold, father of Tom Deeley......................... 26
Deeley, Tom.................................................. 29
Gennaro, Mary, Director of Federal-State Relations, National
Association of Developmental Disabilities Councils......... 30
Gray, Craig E., Director, Services for Independent Living.... 53
Lazio, Hon. Rick, a Representative in Congress from the State
of New York................................................ 7
Richardson, Sally, Director, Center for Medicaid and State
Operations, Health Care Financing Administration........... 12
Waxman, Hon. Henry A., a Representative in Congress from the
State of California........................................ 9
Williams, Hon. Anthony A., Mayor, District of Columbia....... 19
(iii)
THE WORK INCENTIVES IMPROVEMENT ACT OF 1999
----------
TUESDAY, MARCH 23, 1999
House of Representatives,
Committee on Commerce,
Subcommittee on Health and the Environment,
Washington, DC.
The subcommittee met, pursuant to notice, at 2:42 p.m., in
room 2322, Rayburn House Office Building, Hon. Michael
Bilirakis (chairman) presiding.
Members present: Representatives Bilirakis, Upton, Coburn,
Lazio, Cubin, Bryant, Brown, Waxman, Green, Barrett, Capps, and
Eshoo.
Staff present: Tom Giles, majority counsel; Jason Lee,
majority counsel; John Manthei, majority counsel; Penn
Crawford, legislative clerk; Brigett Taylor, minority counsel;
Karen Folk, minority presidential management intern, and
Brendan Kelsay, minority research assistant.
Mr. Bilirakis. I call this hearing on H.R. 1180, the Work
Incentives Improvement Act of 1999, to order.
The subcommittee's consideration of this legislation today
is an important step in improving the quality of life for
millions of Americans who live with disabilities. H.R. 1180 was
introduced last week by two of our colleagues and members of
this subcommittee, Congressman Rick Lazio and Henry Waxman. I
commend their efforts and I was proud to be an original co-
sponsor of the bill. This proposal has strong bipartisan
support, including our subcommittee's ranking member, Mr.
Brown; the full committee chairman, Mr. Bliley, and the
committee's ranking member, Mr. Dingell.
The Senate companion bill, S. 331, was unanimously approved
by the Finance Committee earlier this month. Working together
on a bipartisan, bicameral basis, I believe that we can enact
this important major legislation into law this year, and
hopefully, earlier in the year.
The need for the bill is clear. A recent survey found that
72 percent of Americans with disabilities want to work, but 75
percent are currently unemployed. The disparity exists because
the current system forces people to choose between work and
health care. Under current law, the Social Security Disability
Insurance, SSDI, and Supplemental Security Income, SSI,
programs provide cash benefits to persons with disabilities. By
qualifying for SSDI and SSI benefits, individuals also become
eligible for health coverage through Medicare and Medicaid.
These two programs provide comprehensive services that persons
with disabilities need, but often cannot obtain through
employer-provided coverage. However, SSDI and SSI benefits are
not available to any person engaged in substantial gainful
activity that results in earnings of $500 or more per month. By
going to work, therefore, individuals with disabilities also
risk losing their health coverage under Medicare and Medicaid.
H.R. 1180 would allow States to expand Medicaid coverage to
persons with disabilities through two optional programs. The
bill creates a 10-year trial program to extend Medicare Part A
benefits to SSDI recipients. In addition, it provides
infrastructure and demonstration grants to assist the States in
developing their capacity to run these expanded programs.
And finally, the bill creates a new payment system for
vocational rehabilitation programs that serve individuals with
disabilities. This change will reward successful efforts to
obtain employment. Similar provisions were included in the
Ticket to Work and Self-Sufficiency Act approved by the House
of Representatives last year. The bill before us removes
barriers for individuals who want to work. By encouraging work
over welfare, it also promotes personal dignity and self-
sufficiency. Simply put, H.R. 1180 will help people help
themselves.
Our witnesses today include two of our subcommittee
colleagues, industry representatives, and Federal, State, and
local government officials. We will also hear from several
Americans who live with disabilities about the challenges that
they have faced. I believe they make the most compelling case
for passage of H.R. 1180, and I hope members will pay
particular attention to their testimony. I want to thank all of
our witnesses for their time and effort in joining us today.
I yield to Mr. Brown for his opening statement.
Mr. Brown. Thank you, Mr. Chairman.
First, I would like to ask unanimous consent to enter into
the record Mr. Dingell's opening statement and opening
statements of anyone on either side.
Mr. Bilirakis. Without object, the opening statements of
all members of the subcommittee on either side can be made a
part of the record.
[The prepared statement of Hon. John D. Dingell follows:]
Prepared Statement of Hon. John D. Dingell, a Representative in
Congress from the State of Michigan
Last week, I joined Congressman Rick Lazio, Congressman Henry
Waxman, Chairman Tom Bliley, Subcommittee Chairman Mike Bilirakis, and
ranking minority member Sherrod Brown in cosponsoring the Work
Incentives Improvement Act of 1999. I am pleased that the Commerce
Committee is holding a hearing on this bill today, and I hope that we
take the additional steps that are necessary to enact this bill into
law.
Over the past few decades, many people with disabilities have
benefitted from tremendous developments in assistive technologies, more
sophisticated medical care, and improved access to public facilities
and public transportation. However, one area of life that has not
improved for many people with disabilities is the opportunity to earn a
living. While nearly 80% of non-disabled adults of working age are
employed full- or part-time, less than 30% of disabled adults of
working age hold full- or part-time jobs. This gap between the disabled
and non-disabled population in the area of employment has not improved
since the passage of the Americans with Disabilities Act earlier in
this decade.
Almost three-quarters of people with disabilities who are not
employed say that they want to work. Yet many adults with disabilities
know that earning a paycheck may disqualify them from receiving
Medicaid or Medicare health benefits, which are absolutely necessary
for keeping them healthy enough so that they are able to work. Many
people with disabilities, quite understandably, choose health benefits
over a job.
This bill would ensure that people with disabilities no longer have
to choose between working and getting health care. States would have
additional options to extend Medicaid coverage to working adults with
disabilities. In addition, the bill would lengthen the current period
of extended eligibility for Medicare for disabled beneficiaries who
return to work.
This bill is sound public policy. It has strong bipartisan support
in both the House and the Senate, and the Administration has included
the bill in its budget proposal. I hope that we in Congress will act
swiftly to pass the Work Incentives Improvement Act, which would
provide people with disabilities with the opportunity they deserve--the
opportunity to earn a living.
Mr. Brown. Mr. Chairman, thank you and thank you especially
to Congressman Waxman and Congressman Lazio for taking the lead
on this very important bill.
In 1990 Congress passed the Americans With Disabilities
Act. The objective behind ADA is to wipe out discriminary
practices, active and passive, that undermine equal opportunity
for disabled individuals. Other major laws, including IDEA, the
1998 Workforce Investment Act, and the newly reauthorized
Rehabilitation Act, also promote full participation of disabled
Americans in the community and in the workforce. Yet, less that
.5 percent of the 7,500,000 Americans receiving Social Security
Disability benefits ever return to jobs that could supplant
those benefits. There is a straightforward reason for this and
it is not the loss of a monthly disability check. SSI and SSDI
provide subsistence level benefits, if that. Full or even part-
time work would be the clear economic choice if not for an
impossible tradeoff, access to health coverage.
For many disabled individuals, the ability to work may
hinge on reliable healthcare for personal attendant services.
Yet, under current law, working means losing access to these
very services. By providing continued access to Medicare and
Medicaid, the Work Incentives Improvement Act eliminates this
Catch-22. In addition, H.R. 1180 provides for enhanced job
training and job placement services. It empowers disabled
individuals to shop for the public and private career services
that best fit their talents and their aspirations.
Finally, H.R. 1180 would bolster outreach and assistance
programs that help disabled individuals negotiate the red tape
associated with reentering the workforce. H.R. 1180 taps into
tremendous human potential and takes us closer to a time when
equal opportunity for disabled individuals is no longer an
objective; it is a fact.
I am proud to be the original co-sponsor and I yield back
my time.
Mr. Bilirakis. And I thank the gentleman. The Chair now
yields to the vice chairman of the subcommittee, Dr. Coburn.
Mr. Coburn. I have no opening statement, Mr. Chairman.
Mr. Bilirakis. Ms. Eshoo, for an opening statement.
Ms. Eshoo. Thank you, Mr. Chairman. I'll try to be as brief
as possible.
First of all, thank you to our two distinguished colleagues
that are here today. It is always a source of pride to me as a
Member of the House when some of the great bills that come
before us are originated and brought to us by members of our
committee and our colleagues. So, thank you for doing this. I
am pleased, and I am proud to be a co-sponsor of the
legislation.
The fact that over 70 percent of Americans with
disabilities want to work, yet three-quarters of them remain
unemployed, I think that we have failed America when we see
these numbers, but, happily, we have the solution before us in
the very fine piece of legislation that Representatives Lazio
and Waxman have placed before the Congress and I think that--I
mean, the idea that we would be forcing Americans with
disabilities to be choosing between working and health benefits
is absolutely absurd. If someone were to come in here and
propose that kind of system, we'd all vote against it, and yet
that is the system that we have right now.
So, I think that we have a great, great opportunity. Not
only to hear from the original sponsors, the carriers, the
introducers of the legislation, but from the noble Americans
that are going add their eloquent voices. And I think that this
is a bill that deserves, not only the support of everyone from
both sides of the aisle, but that it should make its way right
to the rose garden and we will all celebrate when it does.
Thank you, and I yield back.
Mr. Bilirakis. I thank the gentlelady.
Mr. Upton, for an opening statement.
Mr. Upton. Thank you, Mr. Chairman. I'm going to insert my
lengthy opening statement into the record. I just want to
compliment my friends, Mr. Lazio and Mr. Waxman, for this piece
of legislation. I, too, join as a co-sponsor of the
legislation. I know plenty of folks in my district that really
do feel like they are prevented from working and feeling good
about the services that they do because of the lack of adequate
health care, and it is with great joy that I join as a co-
sponsor and look forward to this legislation moving swiftly in
a bipartisan matter to this awesome committee.
I yield back the balance of time.
[The prepared statement of Hon. Fred Upton follows:]
Prepared Statement of Hon. Fred Upton, a Representative in Congress
from the State of Michigan
Mr. Chairman, thank you for holding this hearing today on the Work
Incentives Improvement Act, launching this landmark legislation on its
way through the House legislative process. I want to commend my
colleague and friend Rick Lazio for his leadership in developing this
comprehensive measure. It will benefit not only people with
disabilities, but our nation as a whole by removing the substantial
barriers in the way of persons with disabilities who wish to enter or
re-enter the workforce. We will all benefit from the contributions they
are eager to make to our nation's economy and future.
If I had to make one recommendation for a change in this bill, I'd
recommend changing its title from the Work Incentives Improvement Act
to the Work Empowerment Act. Persons with disabilities don't need
incentives to join the workforce. The vast majority are eager to do so.
As one of our witnesses will testify, a Harris poll found that 72
percent of people with disabilities age 16 to 64 who are not employed
would prefer to be working. They want the chance to share their skills,
talents, and dedication in the workforce.
But they face tremendous barriers. Chief among them is the loss of
Medicare and Medicaid coverage. Another is loss of income. They and
their families are often worse off if persons with disabilities go to
work. They are caught in the proverbial ``catch-22'' situation.
The plight of one of my constituents brought this situation home to
me in a way statistics can't. She is a middle-aged, talented lady who
suffers from post-polio syndrome and has limited mobility. She is
receiving Supplemental Security Income and Medicaid. Because she wants
very much to use her talents and give back to the community, she serves
as a volunteer receptionist for their local Disabilities Resource
Center and provides excellent assistance. As much as she would like to
get a paying job, she cannot, because in all likelihood she would earn
too much to keep her SSI and hence her Medicaid coverage and too little
to pay out of pocket for the housekeeping assistance and medical care
she needs to remain in her own home.
That is why I see this as an empowerment act. It will ensure that
working doesn't cost people with disabilities the very health and
social services that enable them to work. It will empower them to
choose the rehabilitation services, public or private, that best meet
their unique needs and talents.
In enacting the Americans with Disabilities Act a decade ago, we
ensured that persons with disabilities would not experience
discrimination in the workforce. Now, we need to knock down the
barriers keeping them from entering or trying to enter the workforce.
The legislation we are considering today will do that.
Mr. Bilirakis. He knows what to say, doesn't he?
Ms. Capps for an opening statement.
Ms. Capps. Thank you, Mr. Chairman.
Thank you for holding this hearing. I want to welcome----
Mr. Upton. If I could just ask unanimous consent to see if
my friend from Florida might have an extra ticket in St.
Petersburg for the Michigan fans down there?
Monday night.
Mr. Bilirakis. Without objection, you can ask, but the
answer is no.
Ms. Capps. Thank you. I want to add my word of welcome and
admiration for my two colleagues for initiating this
legislation. I am in the process of becoming a co-sponsor. I am
going to submit my full statement for the record, but I want to
just highlight for you and for myself now to recall a high
moment in my short legislative career, but a high moment in my
life.
Last winter I had the privilege of providing a key note
address to a group of about 200 consumers of a regional center
in my State, the Tri-Counties Regional Center. This is an
organization which is serving, but also comprised of, the
disabled community in Santa Barbara. The goal of the group is
to help this population, developmentally and physically
disabled, to become fully participating and productive members
of society. In fact, the title of the event was Leadership and
Community Involvement for the Disabled and they invited their
soon-to-be elected representative to come to share legislative
ideas. It was an amazing inspirational group of people who
refused to let their disabilities keep them from attaining
their goals and held me to a commitment, which I was pleased to
give--the commitment that I would do something about this.
This is a part of my obligation today; to be able to hear
your testimony; to be a part of this hearing; and now to be
able to go back to that same group and say, ``Yes, we are
beginning to work.'' There are a counterpart organization in
San Luis Obispo County. SLO-CO access is also deeply involved
in the challenge of getting disabled clients into the
workforce. The key message in this day-long conference repeated
over and over again to me was ``we want to work. You, in the
government, are preventing us from being able to exercise our
full potential as citizens. We want to work.'' They chanted it
to me. I can't get it out of my mind. So, I'm here today
thanking you for giving me something now to carry back to my
constituents.
I yield back the balance of my time.
Mr. Bilirakis. Thank you, Ms. Capps.
Ms. Cubin for an opening statement.
Mrs. Cubin. Thank you, Mr. Chairman.
It is no secret that the vast majority of Americans with
disabilities would like to work. Congress has an obligation, I
think, to look at the legal barriers that force persons with
disabilities to rely on cash benefits.
I want to thank all of you for coming here today. I
appreciate your time and I look forward to hearing your unique
perspective and insights on this issue. I also want to thank my
little buddy, Congressman Lazio, and my other buddy,
Congressman Waxman, for introducing this legislation.
As with any legislation, there could be some haggling over
the details, but I think the fact that we are discussing this
today is vitally important and will help all of us on the
subcommittee to fully understand this issue. Removing the
barriers to employment is a common goal among all of us, and I
expect that today's hearing will help us accomplish this goal.
So, thank you again.
Mr. Bilirakis. Thank you. I think that completes the
opening statements from up here.
[Additional statements submitted for the record follow:]
Prepared Statement of Hon. Nathan Deal, a Representative in Congress
from the State of Georgia
Thank you, Mr. Chairman, for holding this important hearing today
regarding the Work Incentives Improvement Act. I am supportive of the
intent of this legislation. We must enable people with disabilities to
assume greater control over their lives and allow them to contribute
more fully to society. Rapid advancements in technology continue to
provide important new tools to help individuals with disabilities
become more independent and participate in activities related to home,
school, work, and community. However, current health care programs
create barriers to individuals with disabilities trying to increase
their independence and productivity through work. I thank you and look
forward to hearing the testimony from our witnesses.
______
Prepared Statement of Ed Bryant, a Representative in Congress from the
State of Tennessee
Thank you Mr. Chairman. Good morning.
First of all I would like to thank Chairman Bilirakis for holding
this hearing today.
I believe this legislation is very important in terms of removing
the governmental disincentives that make it very difficult--if not
impossible--for so many individuals with disabilities to return to work
or go to work.
It is troubling that nearly 75 percent of people with disabilities
are unemployed, yet surveys show that the vast majority of these people
want to go to work and be productive members of society. I also find it
troubling that every year only one-half of one percent of individuals
with disabilities successfully make the transition from unemployment to
employment.
I look forward today to examining the current situation and
proposed legislation aimed at breaking the cycle of dependency on
government. I appreciate the time and energy that went into crafting
this bill, and I am eager to work with my colleagues on both sides of
the aisle in taking a closer look at it.
Finally, I would like to thank the witnesses who are with us today
for their time and testimony. I look forward to hearing from each of
you.
Thank you, Mr. Chairman. I yield back the remainder of my time.
______
Prepared Statement of Hon. Gene Green, a Representative in Congress
from the State of Texas
Thank you Mr. Chairman for scheduling this important hearing.
I also want to thank Mr. Waxman and Mr. Lazio for taking the lead
on this issue which I believe will give disabled individuals the chance
to choose work over dependency.
I am a cosponsor of H.R. 1180 because I believe it strikes at the
core of human dignity and represents the proper balance of government
support for independent living.
A recent study showed that nearly three quarters of disabled
individuals want to work. Yet \3/4\ of this same population are
unemployed.
How is this possible and what can Congress do to help?
Well, the answer to the first part of the question is that disabled
individuals have unique health care needs that often times can only be
met by Medicaid or Medicare.
The answer to the second part of the question is pass H.R. 1180.
This bill gives disabled Americans the opportunity to gain
employment and continue to receive the medical care they need and
deserve.
While it is an expensive proposal, I believe it is money well
spent. The cost in dollars will pale in comparison to the sense of
accomplishment and independence thousands of Americans will get from
supporting themselves and their families.
Again, I want to thank Chairman Bilirakis for scheduling this
hearing so quickly. Hopefully, this fast-track process will allow this
bill to become law very soon.
Mr. Bilirakis. The Chair is very proud to introduce our two
colleagues, the writers of this legislation, and I'm going to
start off with the man who was here first. I was going to
extend to you the courtesy.
All right, at his request, we'll introduce Rick Lazio, a
member of this committee. Rick, we appreciate so very much the
job you've done on this. Please tell us more about it.
STATEMENT OF HON. RICK LAZIO, A REPRESENTATIVE IN CONGRESS FROM
THE STATE OF NEW YORK
Mr. Lazio. Thank you very much, Mr. Chairman.
Let me begin by thanking you and the ranking member, Mr.
Brown for the opportunity to appear before the committee. I'd
like to also send a special thanks to both of you for co-
sponsorship of this bill and appearing at the press conference
which sent an enormously strong message to the advocacy
community and to all Americans about the prospect for passage
this year. You are two very important players. I want to thank
the rest of the members here and my friends, and in particular,
Mr. Waxman, who is appropriately on my left, who is my partner
in this, and I am very appreciative of him.
The Work Incentives Improvement Act has one goal and one
goal only: enabling individuals with disabilities to pursue, if
they want, work. Over the past decade, we have made dramatic
improvements in removing many of the barriers that have kept
people with disabilities out of the mainstream of American
life. The Americans With Disabilities Act, for example,
successfully helps people with disabilities lead more active
and integrated lives. But the ADA did not complete the work of
removing all barriers. In fact, it not even remove all Federal
Government barriers. Access to healthcare coverage remains an
enormous hurdle confronting people with disabilities who want
to work.
Let me tell you about a man from my district. He is a Navy
veteran from Bay Shore, New York. Several years ago he worked
on Wall Street with the hopes of becoming a stockbroker.
Unfortunately, an accident left him a quadriplegic and he
relies on a tracheostomy to help him breathe and to speak. He
requires nurses or caregivers to clean his tracheostomy and
requires 24-hour home care to assist him with activities of
daily living.
His physical challenge, however, does not inhibit his
ability to be a stockbroker. Years after his tragic accident,
he successfully passed the Series 7 test, a grueling 6-hour
exam to become a licensed stockbroker. And I would add, Mr.
Chairman, with the diversity of technology that is now
available, the folks who are challenged with disabilities have
even more employment opportunities. He would like to open up
his own firm and hire people with disabilities. Nothing is
stopping him in pursuing his American dream except us, the
Federal Government.
His predicament is replicated all across this country by
the millions. According to the report of the National
Organization on Disability, 72 percent of Americans with
disabilities want to work. Yet, less than .5 percent of
disabled Americans are able to move from disability benefits to
employment and self-sufficiency. What is the problem? The
problem is that Federal benefit programs, such as SSDI and SSI,
provide benefits, including healthcare coverage through
Medicare and Medicaid. Services that many disabled workers
require are often not covered by employer healthcare. So, when
a disabled American secures a modest job and earns income, he
or she risks losing their Government benefits, including health
coverage.
Mr. Chairman, this is very important and not hard to
understand. Disabled Americans must choose between working and
surviving. The sad reality is that access to healthcare makes
all the difference when it comes to people with disabilities
moving from the Government roles into the workplace.
This is why together we have introduced the Work Incentives
Improvement Act. The Federal Government should remove existing
barriers and allow these individuals to work. Like all other
Americans, disabled Americans deserve economic opportunity.
They deserve the satisfaction that only a paycheck can bring.
They deserve to be in control of their lives and have the peace
of mind of independence and personal security. They deserve to
follow their own American dream.
The Work Incentives Improvement Act takes significant steps
toward reforming Federal disability programs, improving access
to needed services, and releasing the shackles of dependency.
We, in Congress, have an obligation to help people with
disabilities make this leap and become more productive
citizens.
I know that some members of this committee might have some
reservations about the Medicaid and Medicare provisions in the
bill, especially at a time when these programs face a looming
crisis as the baby-boom generation ages, but we all must keep
in mind that these Medicaid expansions are options for the
States, not mandates. Our bill will give States maximum
flexibility in designing initiatives to promote work for people
with disabilities. And more importantly, these options under
Medicaid are not freebies. States can require people with
disabilities, depending on their income levels, to pay up to
100 percent of premium costs. Likewise the 10-year Medicare
demonstration for SSDI recipients would be available only to
people who would otherwise be eligible for the program. Why not
allow them to get the coverage they need and work at the same
time?
Last week at our press conference, Angelo Bianco, an Air
Force veteran from Jackson Heights, New York, who fought in
Operation Desert Storm, spoke for a few minutes. Angelo has a
spinal cord injury he suffered during his service in the
Persian Gulf. Angelo spoke about how the two most miserable
years of his life were the time he spent at home after the war.
Fortunately, he is now working for the Eastern Paralyzed
Veterans Association and is a productive member of society. I
know, Mr. Chairman, how dedicated you are to the veterans
community, so I know you can relate to this. We need to pass
this bill to enable many more Americans with severe
disabilities to follow Angelo's lead and to move into the
workforce and the mainstream of American life.
I want to thank you again, Mr. Chairman, and the ranking
member, Mr. Brown, and all the members for their supportive
comments and for working in the bipartisan fashion for helping
to move us one major stride forward to ensuring that we have
financial independence for those who have disabilities.
Thank you.
Mr. Bilirakis. Thank you, Rick.
The Chair now calls upon our colleague, Mr. Waxman. First,
I would say that the mayor of the District of Columbia, Mr.
Williams, is scheduled to be here. We are, of course, very
pleased to have him testify at his request, but he hasn't
arrived yet. So, Henry, take your time.
STATEMENT OF HON. HENRY A. WAXMAN, A REPRESENTATIVE IN CONGRESS
FROM THE STATE OF CALIFORNIA
Mr. Waxman. Mr. Chairman, and my colleagues, I thank you
very much for this chance to speak with you and to join with
Congressman Lazio in supporting this legislation. It is clear
that, from the opening comments, all the members of this
subcommittee understand the importance of this bill, and if not
all of you, certainly most of you, are already on as co-
sponsors.
This is an important proposal and it is an unusual one.
It's unusual because of the extraordinary degree of bipartisan
support the bill has. It is, of course, supported by the
chairman, the ranking member of the subcommittee, the chairman
and ranking member of the full committee. It has the
endorsement of the administration. Indeed, it was singled out
by the by the President in his State of the Union Address.
It already has passed the Senate Finance Committee, again,
with the sponsorship of the chairman and the ranking member of
that committee. It has support at the State level, as well as
here in Washington. This bill has this degree of support, I
believe, because it is such a common-sense piece of
legislation. It is moderate in costs. It offers benefits in
terms of productiveness and self-respect for people who are
determined to work and become taxpaying, contributing members
of society.
I want to make just two points about his bill, and if the
mayor doesn't come, I'll soon make three or four additional
ones.
First, it provide States with options to allow them to use
their Medicaid programs to cover people with severe
disabilities who can work if their healthcare coverage is
continued. I, myself, would have preferred a mandate, but if
we----
I only said that to see your reaction.
But I think it is important, at least, to have options
available to the State and I expect the States will respond
favorably to that. And the bill provides options and allows
States to use their Medicaid program to cover people with
severe disabilities who can work if their healthcare coverage
is continued. And it authorizes an extremely important
demonstration program to allow States to provide Medicaid
coverage at a stage that will prevent people from having their
disability become so severe that they end up on SSI. Truly,
that is one of the most sensible things we can do.
This bill also lets people with disabilities who have been
covered by Medicare keep that coverage if they are able to
return to work. Again, this is absolutely critical. This
provision allows people to work. It makes a great deal of
common sense. No one benefits if we bar the door to returning
to work by taking away the healthcare support necessary for a
person with a disability to be able to work. When you look at
how much sense this bill makes, the only real question is, why
haven't we done this sooner?
Let's remedy the fact that this is not yet law. Let's move
as quickly as possible. Let's do it in a bipartisan way. Let's
have an initiative to improve healthcare coverage for
Americans. May this be the first of many bills that this
committee will author and move forward with bipartisan,
overwhelming support, so that we can show the American people
that we are willing to, and actively anxious to, address
problems that really mean something to them in their lives.
Thank you.
Mr. Bilirakis. Well, thank you, Henry. Very well put in
most respects.
We have a history over the last few years of working out
some pretty tough issues on a bipartisan basis, and I am very
hopeful that this is going to continue as far as this
legislation is concerned.
And you and I very briefly chatted about managed care,
sitting down and try and work that out. I don't know why in the
world we can't do that. Of course, it has all come about
because everybody has been willing to give and take a little
bit because we know that is what it is all about, and because
of the great cooperation on the part of my ranking member, Mr.
Brown.
Mr. Brown, do you have any questions of this panel? Any
questions from any member of the panel?
Ms. Eshoo. I just have a curiosity question. I just can't
see how anyone would not support this. There are those that you
might not get to co-sponsor, but I can't help but think that
this really should go to the House on the suspension calendar.
How many co-sponsors are there so far?
Do we know? Forty, and we've just introduced it.
Mr. Bilirakis. Yes, we just introduced it.
Ms. Eshoo. I really think this should be our collective
goal, and that you turn this subcommittee, since we have the
original jurisdiction on this as the whips from both sides of
the aisle to go out and get our colleagues. An eloquent
statement would be made by the House of Representatives if we
could bring this to the floor, and I think that we can on the
suspension calendar.
For those of you that don't know what the term means, it
means that there are 218 people that have signed on and that
there isn't any controversy. So, that is the majority of the
House.
Mr. Waxman. This bill is in our committee, but it is also
in the Ways and Means Committee, and to give credit where it is
due, the Ways and Means Committee did some of the pioneering
work on this legislation.
Ms. Eshoo. That is great. So we shouldn't be too self-
congratulatory here?
Mr. Waxman. No, but I think we need to compliment them for
their initiatives and to impress upon them that we have now
added on some very important features. The healthcare features
are essential, not just the financial assistance to people, but
healthcare and Medicaid is in our jurisdiction as well as
Medicare, which they share with us. So, I hope that----
Ms. Eshoo. We'll join with them?
Mr. Waxman. We will not only work on a bipartisan basis,
but that our two committees will move together.
Mr. Bilirakis. Sometimes it is more difficult to work with
the other committee than it is on a bipartisan basis.
Ms. Eshoo. Not on this one, though. Not on this one. Right.
Mr. Waxman. I never experienced that, Mr. Chairman.
Mr. Bilirakis. You have never?
All right, Henry.
Barbara, any questions?
The mayor is not here yet. Should he arrive--he was
scheduled to be here about 5 minutes to 3--we'll work him in
somewhere along the line, if he has the time to wait a while.
Mrs. Cubin. Mr. Chairman, I do have a bill in Resources
Committee that I could educate the committee on, if--Never
mind.
Ms. Bilirakis. You mean just to take up the time.
Mrs. Cubin. Sure.
Mr. Waxman. I can tell you about the activities in the
Government Reform Committee, so you don't think everything is
bipartisan or harmonious.
Mr. Brown. Speaking of bipartisanship.
Mr. Waxman. Well, it is appropriate this is the first
hearing post-Hershey.
Mr. Bilirakis. Well, thanks. Thanks guys. We are going to
do this. We are going to do this together.
Mr. Lazio. Thank you very much, Mr. Chairman.
Mr. Bilirakis. The second panel.
I tell you, we don't usually see or hear very much applause
on this committee. The press conference the other day was, I
think, the first that I've experienced in quite a while, and
that was really great. So, we appreciate it again today.
The second panel consists of Ms. Sally Richardson, the
Director--is she here?
Ms. Richardson. Yes, sir.
Mr. Bilirakis. Oh, there she is. Sally, I'm sorry.
Ms. Richardson. That's all right.
Mr. Bilirakis. Director of the Center for Medicaid and
State Operations with HCFA, Ms. Richardson. We're turning the
clock to 10 minutes, but just tell us what it is you want to
tell us.
STATEMENT OF SALLY RICHARDSON, DIRECTOR, CENTER FOR MEDICAID
AND STATE OPERATIONS, HEALTH CARE FINANCING ADMINISTRATION
Ms. Richardson. Well, the first thing I would like to do,
Chairman Bilirakis, and Congressman Brown, and the rest of your
distinguished subcommittee members, is to thank you for asking
me to discuss the very strong----
Mr. Bilirakis. Why don't you pull that closer to you
[referring to microphone], if you will please?
Ms. Richardson. [continuing] oh, I'm sorry--to discuss the
very strong support of the Clinton administration for the Work
Incentives Improvement Act of 1999. We would also like to thank
you, Chairman Bilirakis and Congressman Brown, for your
leadership in building bipartisan support for this important
legislation, along with Chairman Bliley, Congressman Dingell,
Lazio, Waxman, and Senators Roth, Moynihan, Jeffords, and
Kennedy. It is a wonderful, wonderful example of Congress
joining together to fill a real need.
The Health Care Financing Administration and the Clinton
administration have been working diligently to improve the
lives of people with disabilities. We recognize that they
deserve to be treated with dignity. They deserve to be able to
contribute their talents and skills to our communities in our
society, and they deserve to have broad options for obtaining
the care and the services that they need.
The threat of not having health coverage should never allow
them or us to be able to discourage capable individuals from
returning to work. We believe it is both prudent and fair to
extend Medicare and Medicaid benefits to disabled individuals,
as you have proposed in the Work Incentives Improvement Act, in
order to remove this threat.
The Work Incentives Improvement Act will help people with
disabilities take fuller advantage of the technological
advances that have opened doors for them to the workplace.
Under current law, a person as you know with a disability who
takes a job can become ineligible for Medicare and Medicaid
because of their income or their ability to work. The private-
sector coverage that is available to many employees of private
companies is very often unavailable or unaffordable for
disabled people, specifically because of their disability. The
Work Incentives Improvement Act will help States do something
about that. It allows States to lift or relax current
eligibility limits on assets and income for this population,
building on the provision that you passed in the Balance Budget
Act of 1997. It allows States to charge premiums on a sliding
scale. It allows States to let the working disabled buy
Medicaid coverage when they would otherwise lose eligibility
due to medical improvement. It gives States $150 million for
infrastructure grants to help develop programs and systems that
can support the working disabled moving into work and also
provide assistance supporting home and community-based services
for people who are served currently in institutions.
It provides Medicare Part A coverage during the 10 years
following the enactment of this bill for those disabled
individuals who lose Social Security due to their ability to
earn a living. This is a provision that will provide relief for
individuals in those States that may not choose the Medicaid
expansions in the bill.
And it authorizes a demonstration, a test, so that we can
measure the value of providing Medicaid to individuals with
conditions like diabetes and HIV that, left untreated, can lead
to disability. The bill is included in the President's fiscal
year 2000 budget, and it is part of a broader administration
agenda for helping disabled individuals return to the
workforce.
We are really proud to be among a wide bipartisan array of
supporters for this legislation. We look forward to working
with you to help pass this bill and to help bring disabled
individuals into the workforce. I especially appreciate, as I
said when I began, your holding this hearing and your asking us
to be part of it. And I am very happy to answer questions that
you have.
[The prepared statement of Sally Richardson follows:]
Prepared Statement of Sally Richardson, Director, Center for State and
Medicaid Operations, Health Care Financing Administration
Chairman Bilirakis, Congressman Brown, distinguished subcommittee
members, thank you for inviting me to discuss the strong support of the
Clinton Administration for the Work Incentives Improvement Act of 1999.
We would like to thank Chairmen Bilirakis and Bliley, Congressmen
Dingell and Waxman, and Senators Roth, Moynihan, Jeffords and Kennedy
for their leadership in building bipartisan support for this prudent,
fair, and necessary legislation.
The Health Care Financing Administration is working diligently, in
concert with the President's goals, to improve the lives of people with
disabilities. These individuals deserve to be treated with dignity, to
be able to contribute their talents and skills to society, and to have
broad options for obtaining the care and services they need. Now, more
than ever, given innovations in technology and the historic strength of
the economy, people with disabilities can and should be able to work
and pay taxes.
One way we are working to meet these goals is by encouraging States
to offer more Medicaid home and community-based services. This involves
allowing funds for care and services to ``follow the person,'' instead
of dictating that services will be funded only in specific settings
like nursing homes. And, based on results of a University of California
San Francisco study we commissioned, we are changing Medicaid rules to
encourage care in home and community-based settings.
However, some policy changes needed to improve the lives of people
with disabilities require legislation. The Work Incentives Improvement
Act is one such piece of needed legislation.
We need this legislation so people with disabilities can take
fuller advantage of technology advances that have opened doors to the
workplace for them. We must ensure that people with disabilities can
engage in gainful employment without losing public health care coverage
that they often cannot replace in the private sector. We must also give
young people with disabilities the opportunity to go from education to
employment without ever receiving cash assistance in order to gain
health care coverage. This bill will do so.
The President, HCFA and a wide, bipartisan array of Congressional
leaders strongly support this bill. It is included in the President's
fiscal 2000 budget, and is part of a broader Administration agenda for
helping disabled individuals return to the workforce.
Currently three out of four people with disabilities are not
working. The unemployment rate among disabled people is exacerbated by
existing law, which can make a person with a disability who takes a job
ineligible for Medicare and Medicaid because of their income or ability
to work. Private sector coverage is often unavailable or unaffordable
for disabled people specifically because of their disability.
The Balanced Budget Act enables States to provide Medicaid coverage
to the working disabled with incomes up to 250 percent of the federal
poverty level if they meet the unearned income eligibility criteria and
definition of disability for the Supplemental Security Income program.
We have encouraged States to take advantage of this opportunity, and
have approved Oregon's plan to do so. Several other States have
proposals under consideration, but too few States have taken advantage
of this BBA provision.
The Work Incentives Improvement Act will improve upon the Balanced
Budget Act in a number of ways. It expands State options for providing
Medicaid coverage to the working disabled. It allows States to lift or
relax current eligibility limits on assets and income for this
population. States would be able to set limits on assets and income,
and they would be able to charge premiums on a sliding scale. States
could also allow the working disabled to continue to buy Medicaid
coverage when they would otherwise lose eligibility due to medical
improvement.
The Work Incentives Improvement Act will provide $150 million over
five years in grants to participating States to help them develop
programs and systems that support working individuals with
disabilities, build the capacity to provide home and community-based
services, and conduct outreach campaigns to connect individuals with
services. This money should help States facilitate coverage for
optional eligibility groups and increase the likelihood that they will
choose to provide this coverage.
The Act will also provide Medicare Part A coverage (for inpatient
hospital and related acute care needs) to any individual who remains
disabled but loses Social Security during the 10 years following
enactment of this bill due to their ability to earn a living. This will
provide important relief for the working disabled in States that do not
choose the Medicaid expansions.
And it provides for a $300 million demonstration program over five
years that would allow participating States to provide Medicaid to
individuals with health conditions that have not yet rendered them
disabled, but that can be expected to cause the level of disability
required to qualify for disability income. This demonstration would
test the cost effectiveness of providing coverage and consequent care
needed to prevent disability and related costs. And it will provide
important data that private insurers can use in crafting new coverage
policies for disabled workers.
The bill also includes a series of non-health provisions that
target individuals receiving Social Security disability benefits,
including:
<bullet> a ``Ticket to Work'' public-private partnership program that
would allow beneficiaries to go to either a public or private
participating provider for employment-related services, with
payment to providers based on employment outcomes;
<bullet> restrictions on employment as the sole basis for continuing
disability reviews;
<bullet> expedited eligibility determinations for beneficiaries who
have left disability rolls to return to work but then must
reduce or stop work due to their impairments; and
<bullet> outreach and assistance programs to provide information on
work incentives.
The President has proposed to broaden the outreach and assistance
grant programs in the bill to include ``one-stop shopping'' assistance
for people who need help navigating the bureaucracies involved in
returning to work. The proposal would provide grants to ensure that
one-stop centers, established by the Workforce Investment Act of 1998,
are focused on integrating services that are essential for people with
disabilities. We hope that you will consider this broader grant program
in this bill or other legislative proposals.
The threat of no health coverage should not be allowed to
discourage capable individuals from returning to work. It is both
prudent and fair to extend Medicare and Medicaid benefits to disabled
individuals under the Work Incentives Improvement Act in order to
remove this threat.
administration support for the working disabled
As mentioned above, support for the Work Incentives Improvement Act
is part of broad Clinton Administration support for efforts to improve
the lives of people with disabilities and facilitate their employment.
President Clinton established the President's Task Force on Employment
of Adults with Disabilities by executive order on March 13, 1998. This
task force is working to coordinate national policy to bring adults
with disabilities into the workforce at a rate that is closer to the
general population.
The President's fiscal 2000 budget includes a three-part initiative
that will invest more than $2 billion over five years to encourage
employment among disabled individuals. The first part of that
initiative is enactment of the Work Incentives Improvement Act. On
January 13, 1999, the President announced his support for this
legislation as part of his larger initiative to improve economic
opportunities for Americans with disabilities.
The President's fiscal 2000 budget's working disabled initiative
also includes a proposed $1,000 annual tax credit for workers with
disabilities to help defray the costs of transportation, adaptive
equipment or other job assistance. It also includes a $15 million or 50
percent increase for assistive technology activities authorized under
the Assistive Technology Act of 1998, and expanded access to
information and communication technological advances that help disabled
individuals function on the job. Workers with disabilities also will
benefit from the President's multi-faceted long-term care initiative
that includes a number of provisions targeted toward adults with
disabilities.
Also, to further provide States flexibility to offer more home and
community-based services, the Vice President recently unveiled a new
proposal to allow States to expand home and community-based care to
individuals with incomes up to 300 percent of the Social Security
Income limit. That is the same income limit for providing care in
nursing homes. This would provide another State option to enable
families with long term care needs to stay in the community. The
initiative would cost $110 million over five years, and is paid for in
the Administration's balanced budget.
conclusion
The Work Incentives Improvement Act is prudent, fair, and necessary
to ensure that disabled individuals can participate fully in the job
market without fear of losing health care coverage. We are proud to be
among a wide, bipartisan array of supporters for this legislation. We
look forward to working with you to secure passage of this bill and
other Administration proposals to help bring disabled individuals into
the workforce and to increase the availability of Medicaid services in
home and community-based settings. I thank you for holding this
hearing, and I am happy to answer your questions.
Mr. Bilirakis. Thank you very much, Ms. Richardson, and we
are very pleased that you were willing to come here because,
again, when we talk bipartisanship, we should mean including
the other portions of government in the process.
Let me ask you, and I guess this is more curiosity on my
part, but I think it is also pretty significant. BBA 1997
allowed States to increase the Medicaid buy-in for workers with
disabilities up to 250 percent of the poverty level. Yet, as I
understand it, only one State, Oregon, has exercised this
option. Why do think this is?
Ms. Richardson. With all due respect, Mr. Chairman, BBA
gave the States a good deal to think about and to work for that
they hadn't expected, so to speak. And I think the Children's
Health Insurance Program which expanded healthcare coverage to
5 million additional children in this country, changes in the
Medicaid Managed Care Program which, obviously, concerns all
the States since most of them have some form of managed care
now operating in their State--I think these were all things
that they felt had to be addressed. I think that these were
more immediate concerns, as you know. CHIP was initiated or had
to be implemented by the first of the fiscal year, and Medicaid
Managed Care, as I said, has been very much on their plates. We
now have another 11 States that are talking to us about the
provision in BBA 1997----
Mr. Bilirakis. Good.
Ms. Richardson. [continuing] and looking toward submitting
plans to us to be able to implement it. Sometimes because this
is a very complex area and this is a very complex policy for
States, it takes longer to put it together than States might
imagine at the beginning.
And you're going to hear from Mr. Auerbach today, who has
implemented this provision or is implementing this provision in
the State of Oregon, and he will be able to either confirm or
expand on what I think are the reasons why States have not
immediately taken this up.
Mr. Bilirakis. Right, well, let me ask you, then, a thought
in that same vein. I was very curious why more States hadn't
taken advantage of it and your answers are very good. I just
wonder, though, is the language in BBA 1997 a problem in terms
of interpretations, definitions? Since I think we all intended
to give the States this authority and we all think it was a
good idea, is there something that we can do regarding the
language of BBA 1997 to maybe spur this on somewhat?
Ms. Richardson. Well, I think----
Mr. Bilirakis. In your opinion?
Ms. Richardson. I think that you have done that in this
legislation by lifting the 250-percent cap and also by giving
States the explicit authority to set income and assets levels,
also to set premium levels on sliding scales. We have had some
concerns, and I think Mr. Auerbach will talk to you about
those, about the fact that there are concerns about
statewideness. There are some of the concerns that States have
about the definition of working in this population.
Mr. Bilirakis. Good. Well, we need to know more about that
because we might be able to be very helpful, and should be able
to be very helpful in that regard.
Thank you very much.
Mr. Brown.
Mr. Brown. Thank you, Mr. Chairman.
Ms. Richardson, welcome back to our subcommittee.
Understanding your expertise is specifically--``especially,'' I
should say, rather than specifically--Medicaid, I wanted to ask
you a couple of questions. You've always been able to go
further than that in answering questions. I wanted to ask you a
couple of questions about Part A Medicare.
As you know, we've talked during the meetings of the
Medicare Commission, and much of that is centered around
solvency, the Part A trust fund, and we got good news last week
when CBO extended the period to 2010, two more years, rather
than 2008. Critics of the bill argue, however, that we should
not be extending or this whole idea, critics say, we should not
be extending Medicare coverage to anyone. What is your response
to people who say that doing this and extending Medicare to
more people will unduly drain the trust fund?
Ms. Richardson. I think that the estimates are, for this
particular bill, that it would have negligible impact on the
trust fund. It is something we could do now. It is in the
President's 2000 budget, and as I said, it is an insignificant,
very negligible----
Mr. Brown. Negligible means how much?
Ms. Richardson. I think it's less than a percent, maybe
two. They told me to give you a graphic example and I forgot.
It is basically less--certainly way less than a month's
expenditures in the trust fund is what it would have on the
solvency of the trust fund over the long run.
Mr. Brown. So, if the solvency is 2010, then this would be
2009 and 11-plus months. It is that insignificant in terms of
solvency of the trust fund?
Ms. Richardson. Yes, that's right.
Mr. Bilirakis. Okay. The bill makes SSDI recipients who
return to work permanently eligible for Medicare Part A without
having to pay Part A premiums. My understanding is, under
present law, there is some trial period that people in SSDI may
receive Medicare for up to, I believe, 4 years----
Ms. Richardson. It is 4 years.
Mr. Brown. [continuing] if they sort of pass the hurdles,
without paying Part A premiums. Why do we need this then? What
is the real difference?
Ms. Richardson. Most people who enter into that program,
basically, don't ever finish it. Our figures show that only
about 7,500 a year actually successfully complete that extended
period of eligibility, and our figures also show that we have
only about 170 people who have actually bought into Medicare
following their extended period of eligibility.
The thought for most people of losing their Medicaid
eligibility even at the end of 4 years is, particularly,
because it takes so long for them to get back into Medicaid--
I'm talking Medicaid; I should be saying Medicare--because it
takes them so long to get back into Medicare. Basically, it is
an enormous threat after what, basically, is their physical
liability.
Mr. Brown. So making that permanent would sort of change--
it would mean those people, rather than falling short on 4
years, might be able to with some permanence, without having to
pay Part A premiums, with some permanence, would be able to
stay with it and keep getting the benefit?
Ms. Richardson. To stay with it, and to not have the fear
that they are going to at any point have to sit out 2 years
without any Medicare insurance.
Mr. Brown. Okay, thank you, Ms. Richardson. Thank you, Mr.
Chairman.
Mr. Bilirakis. I thank the gentleman. Mr. Lazio.
Mr. Lazio. Thank you very much. I appreciate very much your
supportive comments on behalf of the administration.
I have two questions I want to ask. First of all, some
people who have disabilities do go back to work. They may have
employer-paid healthcare, but there is a concern that many of
those benefit options, that coverage, does not provide the type
of coverage that folks need who have disabilities.
Could you speak to that issue and why is it that it is just
not good enough to rely on employer-paid healthcare premiums
for folks that have disabilities?
Ms. Richardson. With the new assistive technologies that
are available to individuals, a much broader array of
individuals are able to go back to work if they would have the
kind of coverage that could pay for things that they
particularly need. I think probably the most frequent need that
they have that Medicaid covers, but that private insurance
doesn't, is personal-assistant services. There are a number of
services of that same nature that, basically, private insurance
doesn't cover. In addition to that, many of the assistive
devices that they actually need to be able to work are not
covered by private insurance, but are covered by the Medicaid
program.
Mr. Lazio. And so on top of the actual coverage, this bill
does include infrastructure money, $150 million?
Ms. Richardson. It includes infrastructure, $150 million,
and then an increasing amount in the out 5 years based on the
CPI.
Mr. Lazio. Let me ask you in terms of scoring because we
are so cost-sensitive: You were involved, as I understand it,
in working with CBO to come up with a score on this and--am I
right?
Ms. Richardson. Well, our agency was.
Mr. Lazio. We can change that. One of the concerns that I
have, though, in achieving this scoring or the estimate of
costs for this bill, is that it appears as though the costs
associated with staying on a public subsidy, on SSI or SSDI,
indefinitely, including reliance on perhaps housing assistance,
section 8 housing assistance or food stamps or other issues,
was not really taken into account in terms of developing a cost
estimate. Nor, I might add, was the sort of sense of what type
of Federal dollars would be created by people going back to
work and paying taxes and contributing to the economy. I know
some of this is very difficult to calculate, but even on the
example that I used with a stockbroker that technology is now
opening up huge vistas to people with disabilities that even a
few years ago would not have been possible. And I can't help
but thinking about people like Steven Hawking and others with
enormous genius and brilliance who are challenged with
disabilities, but their potential for income is enormous.
Could you speak to why you think that came out that way,
and do you think that those ailments need to be included in an
understanding of what the costs might be?
Ms. Richardson. Basically, I think it has not been the
practice at the Federal level to estimate costs in relationship
across components and across programs. It is a very, as you
said, quite difficult thing to do, and I think it just has not
been the practice to do. We certainly have discussed it within
our own agency in talking about programs for the duly eligible,
for instance. But it has not been something that anyone has
been willing to take on as a new concept for consideration.
Mr. Lazio. In your experience, though, would you say that
common sense would dictate that there would be a savings as
people with disabilities go back to work.
Ms. Richardson. Well, there certainly are going to be
additional costs, and there are going to be additional savings
that would be put into the successful, particularly if you
really want to reach out and enable all of the people who could
go to work through the Work Improvement Act. There will be
other costs----
Mr. Bilirakis. The gentleman's time has expired. I also
want to announce--what is our yearly budget here in the United
States of America and in the Congress? But this machine is not
working and the clock is not working.
So I am going to have to just estimate.
Ms. Richardson. Are you Y2K compliant?
Mr. Bilirakis. I did want to announce that his honor the
mayor is here. I understand there will be a series of votes
when they finally finish up with the suspension that is on the
floor right now. I would ask for brevity from the committee in
terms of questioning Mrs. Richardson, because I think it would
be a good idea if we could hear the mayor's testimony before we
break for the series of votes; otherwise, he is going to be
cooling his heels for quite some time.
Ms. Eshoo. Mr. Chairman, can I just make a suggestion that,
if any of us do have questions, that we have unanimous consent
to submit them to Ms. Richardson?
Mr. Bilirakis. Well, I like that suggestion. Is there any
objection to that?
Ms. Eshoo. Well, I'm asking for unanimous consent for that.
Mr. Upton. May I get my tickets?
Mr. Bilirakis. Unanimous consent has been asked that all of
the questions be forwarded to Mrs. Richardson in writing, and,
of course, there will be other questions that may arise or we
would ask at this point in time. The questions asked by Mr.
Lazio are obviously very pertinent and very significant, and
there will be others. Basically, what we are saying is, help us
to be able to get this bill through as quickly as we can.
Ms. Richardson. We are really--at HCFA, we are really, and
the administration--really committed to getting this bill done.
As much help as we can give you, we will.
Mr. Bilirakis. Great. Well, we are all looking forward to
it. Thanks again so very much, Ms. Richardson, for being here
today.
The Chair now will call upon Mayor Anthony Williams to come
forward.
Mayor Williams served as the Chief Financial Officer for
the District of Columbia from October 1995 to June 1998. He was
appointed by former Mayor Marion Barry to assist the agencies
and balance the city's budget. This put the District on a track
for the return to self-government 2 years earlier than
projected, and delivered a surplus of $185 million in fiscal
year 1997. Having stabilized the city's financial management,
Mr. Williams resigned as CFO in June to run for mayor. As we
know, he was most successful.
Mr. Williams brought extensive experience in management and
strategic planning to his role as the District's independent
CFO, and, of course, to his work now as mayor. Under his
leadership, the District achieved significant improvement in
case management, budget execution, and revenue collections.
He has a very impressive resume. He served in the United
States Air Force. I, too, an am alumnus of the Air Force, sir.
He holds a bachelor of arts degree in political science from
Yale, where he graduated magna cum laude, a juris doctorate
from Harvard Law School, and a master's degree in public policy
from the Kennedy School of Government.
Mayor Williams, thank you so much for gracing this
subcommittee with your presence. Please proceed to talk about
the need for this legislation in your own words.
STATEMENT OF HON. ANTHONY A. WILLIAMS, MAYOR, DISTRICT OF
COLUMBIA
Mr. Williams. Well, Mr. Chairman, and I also thank Chairman
Bliley, and thank the members of the committee for allowing me
to come up to the Hill and testify in support of H.R. 1180. I
believe that this bill very much complements what we are trying
to do in our city, which is to promote work and preserve the
family, to build community, and to show that by building
community and supporting all in our city, and giving them a
hand-up into fulfillment, we show that democracy can work in
our city. And I do believe that the Work Incentives Improvement
Act will serve as a major step forward for those members of our
society and city who want to participate fully in the
workforce, but simply need support to do so.
We face a challenge not like that of other jurisdictions.
Although we've entered into a period of economic and financial
recovery, too many of our citizens are being left behind. We
believe that we will not have true economic recovery until we
have extended the benefits of economic prosperity to all of our
citizens, black and white, rich and poor, young and old, sick
and healthy. One group that has fared worse than others are our
disabled citizens, the overwhelming majority of whom want to
join the workforce, but have, until this point, been faced with
many disincentives. We have to do better by these citizens.
I believe that this legislation is in keeping with what we
are trying to do here in the District, our Nation's capital. I
want to get this city moving again, and to do that, we need to
have all of our citizens onboard. As I have said many times, to
really get our city moving, everyone has to be at work, out of
the stands, doing color commentary, and down on the field. I
think this legislation helps get everyone on the field, and
helps everyone become a vital and active part of our economy. I
also believe that it promotes work and helps people realize
their true potential. It is about not giving up on people just
because they have a disability. It is recognizing the
contributions that every citizen can make.
I believe that it complements an initiative that we are
undertaking in our city to provide healthcare insurance to
39,000 of our citizens who currently go without coverage. Much
like those who will be positively affected by this act, these
individuals, members of the working poor, are struggling to
survive under difficult economic circumstances. They are
working; they are often supporting families, but if they get
sick, they face personal and financial ruin. By providing
insurance and, very importantly, giving our citizens a choice
of where they get their healthcare, we help them to attain
financial security and personal fulfillment. Most importantly,
we help them find true independence.
The District, like other jurisdictions across the country,
is in the process of moving thousands of people off the welfare
rolls. But simply moving someone off the welfare rolls is not
an accomplishment if we have not put the infrastructure in
place to move these citizens meaningfully and fully into the
world of work. This means investing in job training, child
care, and, yes, healthcare for disabled and working poor.
Now, I have often said that I am the product of the civil
rights movement, the product of activist government, in a
useful way, and the product of loving parents. I have been
fortunate in life, but I would not be here today without the
support of government programs that serve essentially as a
hand-up in our climb toward personal fulfillment. I think this
legislation is legislation that all Members of Congress can and
should support. I thank the chairman for holding these hearings
and taking the first step toward helping a segment of society
that has been, for too long, overlooked, and must not be
ignored. So thank you, Mr. Chairman, and members of the
committee, for offering this testimony to you.
[The prepared statement of Hon. Anthony A. Williams
follows:]
Prepared Statement of Hon. Anthony Williams, Mayor, District of
Columbia
Chairman Bliley, Subcommittee Chairman Bilirakis, Members of the
Committee, thank you for the opportunity to testify before you today in
support of HR 1180--The Work Incentives Improvement Act. This important
legislation will serve as a major step forward for those members of our
society who want to participate fully in the workforce but simply need
support.
The District of Columbia faces a challenge not unlike that of other
jurisdictions: although we have entered into a period of economic and
financial recovery, too many of our citizens are being left behind. We
will not have true economic recovery until we have extended the
benefits of economic prosperity to all of our citizens--black and
white, rich and poor, old and young, sick or healthy.
One group that has fared far worse than others are our disabled
citizens, the overwhelming majority of whom want to join the workforce,
but have until this point been faced with disincentives. We must do
better by these citizens.
This legislation is in keeping with what we are trying to do here
in the District of Columbia, our Nation's capitol. I want to get this
city moving again. To do that, we need to have all of our citizens on
board. We cannot afford to leave anyone on the sidelines.
This legislation promotes work and helps people realize their true
potential. This legislation is about not giving up on people just
because they have a disability. It is about recognizing the
contributions each citizen can make.
This legislation will complement an initiative I am undertaking
here in the District to provide insurance to 39,000 of our citizens who
currently go without coverage. Much like those who will be positively
affected by this act, these individuals, members of the working poor,
are struggling to survive under difficult economic circumstances. They
are working, often supporting families, but if they get sick, they face
personal and financial ruin. By providing insurance, we help them to
attain financial security and personal fulfillment. Most importantly,
we help them find true independence.
The District, like other jurisdictions across the country, is in
the process of moving thousands of people off the welfare rolls. But
simply moving someone off the welfare rolls is not an accomplishment if
we have not put the infrastructure in place to move these citizens into
the world of work. That means investing in job training, child-care,
and yes--health coverage for the disabled and working poor.
I have been fortunate in life, but I would not be where I am today
without the support of government programs, such as this, that serve as
essentially a hand-up in our climb toward personal fulfillment.
I think this is legislation all Members of Congress can support. I
thank the Chairman for holding these hearings, and taking the first
step toward helping a segment of our society that has been too long
overlooked.
Mr. Bilirakis. Well, thank you, thank you so much. Your
honor, I think that you probably have said it better than any
of us could, in terms of proper philosophy--a Republican
philosophy, a Democratic philosophy, really an American
philosophy. We appreciate very much you being here, and it is
going to be a big factor in our moving this legislation forth.
Mr. Williams. And I thank the chairman, and if the chairman
or any members of the committee would like to submit written
questions, or anything you would like to know about what we are
doing in our city and how this legislation would be supported,
we would be more than happy to provide----
Mr. Bilirakis. Well, without objection, questions might be
afforded to you for response, which would be very helpful in
the continuation of this legislation. I don't really want to
cut anyone off, as far as asking any questions at this point in
time.
Ms. Eshoo. You just did.
Mr. Bilirakis. But I did. Do you want to make your comment?
Ms. Eshoo. Just very quickly. Thank you for coming up to
the Hill in support of this. You spoke eloquently to it, and we
appreciate it. I just wanted to say, as a during-the-week
resident in the District, I think you have passed your first
major test. The roads were cleared when the snow fell. Thank
you.
Mr. Williams. Thank you very much. I appreciate that,
Congresswoman.
Mr. Bilirakis. Mayor, I was up here back in the early
1960's, as an engineer before my current life. I remember when
it snowed then, everything froze, everything just died. I'm not
sure that has changed very much. But I think there has been
some improvement over the last couple years.
Mr. Williams. Thank you very much. Thank you all very much.
Mr. Bilirakis. Thank you very much for coming. Well, I
guess I will introduce the next panel. It might be a good idea
in the interest of time, and then we'll break. We have, as far
as I know, three votes coming up; there may be four. So, you
know, we're probably talking a good 40-45 minutes before all of
those are disposed of. But, I'm going to introduce the next
panel, although they are free, of course, after we recess, to
walk around.
The next panel will consist of Mr. Jeff Bangsberg, Interim
Public Policy Director for the Courage Center. Jeff is here
from Minnesota. We heard him speak the other day, he is very
eloquent, and we look forward to hearing from you again, Jeff.
Mr. Tom Deeley, the CEO of Mark Hall, Vice President of
Business Development, Fairfax Opportunities Unlimited,
accompanied by Harold Deeley. Mary Gennaro, Director of
Federal-State Relations, National Association of Developmental
Disabilities Councils here in DC; Alan Bergman, President and
CEO of the Brain Injury Association, here from Alexandria;
Steven R. Cooley, Fellow with the American Board of Disability
Analysts, from my area of Clearwater, Florida; Roger Auerbach,
Administrator, Oregon Senior and Disabled Services Division. I
know Roger is expecting us to inquire a little more in terms of
why Oregon is the only State that seems to have taken advantage
of the BBA 1997 language. And Mr. Craig Gray, Director of
Services for Independent Living, UNUM Life Insurance, from
Portland, Maine.
Ladies and gentleman, I would ask you--you now are
officially the third panel, but we are going to recess until we
finish up with those three, possibly four votes. Well, 4:15 or
earlier, I'm going to ask members to get here right after those
four votes. They're not voting until 4:15? See how things
change up here?
I would ask the third panel to come forward at this time.
Mr. Bryant. Mr. Chairman?
Mr. Bilirakis. Yes?
Mr. Bryant. Do we have unanimous consent to submit----
Mr. Bilirakis. Yes, we've already done that, by all means.
Mr. Bryant. Thank you.
Mr. Lazio [presiding]. Again, good afternoon. Let me again
thank the third panel for coming forward and for submitting and
preparing testimony. All of that testimony will be included in
the record by unanimous consent requested. Without objection,
that is so ordered.
We're going to move first to hearing the testimony of Jeff
Bangsberg. I want to welcome you, Jeff, and thank you again for
your appearance and your eloquence at the press announcement.
Without further delay, let me recognize you for your statement.
You can summarize it, because, as I say, the rest of the
written comments will be included in the record.
STATEMENTS OF T. JEFF BANGSBERG, INTERIM PUBLIC POLICY
DIRECTOR, COURAGE CENTER; TOM DEELEY; HAROLD DEELEY, FATHER OF
TOM DEELEY; MARY GENNARO, DIRECTOR OF FEDERAL-STATE RELATIONS,
NATIONAL ASSOCIATION OF DEVELOPMENTAL DISABILITIES COUNCILS;
ALLAN I. BERGMAN, PRESIDENT AND CEO, BRAIN INJURY ASSOCIATION;
STEVEN R. COOLEY, FELLOW, AMERICAN BOARD OF DISABILITY
ANALYSTS; ROGER AUERBACH, ADMINISTRATOR, OREGON SENIORS AND
DISABLED SERVICES DIVISION; AND CRAIG E. GRAY, DIRECTOR,
SERVICES FOR INDEPENDENT LIVING
Mr. Bangsberg. Thank you, Mr. Chairman. It is my honor to
be here today, and thank you for heading up this effort. Mr.
Chairman, and members of the committee, my name is Jeff
Bangsberg, and I am here on behalf of Minnesotans with
disabilities, which includes the great Governor, Jesse Ventura.
It is no exaggeration that the Work Incentive Improvement
Act of 1999 is as significant as the Americans with
Disabilities Act. Thanks to the ADA, many people with
disabilities are being offered jobs, but they cannot take
advantage of those jobs, because barriers remain in the way.
First and foremost is the loss of health coverage. Although
employer-based insurance pays for acute and primary care, it
generally does not cover specialized medications, personal
assistant services, and other long-term care health needs.
Last spring, we conducted a survey on healthcare barriers
to employment for people with disabilities in Minnesota. Almost
1,200 persons with disabilities completed this survey, and this
survey is attached in the testimony that I have before you. The
majority of the respondents indicated that they would go to
work or increase their employment if their healthcare benefits
were not affected.
Mr. Lazio. Could you suspend for a minute? May I have some
order, please, for Mr. Bangsberg? Thank you. You can continue.
Mr. Bangsberg. In addition to worrying about healthcare,
people with disabilities often face the prospect of losing cash
assistance before they can earn enough to make up for the
benefits they lose. In particular, the SSDI program's all-or-
nothing approach leaves many people who go to work with less
money than when they were unemployed.
Now let's talk about the complexity of the system as it
exists today. People with disabilities who want to work are
faced with a maze of complex, complicated government rules and
regulations. Many people have college degrees, some of them are
even rocket scientists, but nothing can prepare them to find
their way through this particular bureaucracy. The beauty of
the Work Incentives Act is that it takes a comprehensive
approach in addressing all of these programs.
I would like to tell you about a few people in Minnesota
who are being helped by this legislation. Tom is a young man in
his early 30's who is paralyzed from the chest down, like I am.
Tom was a pipefitter prior to his accident, and his employer is
willing to re-train him. Tom cannot accept this offer because
he needs costly personal care services that are available
through the Medicaid program. Current regulations require him
to impoverish himself to retain Medicaid. Tom lives in an
apartment with the elderly, and hates being on public
assistance, but he has no choice under the current system.
According to Tom, being able to go back to work and make a
living, as he was before his injury, would be the best medicine
ever out there.
A woman named Deb is faced with some of the similar issues.
Deb works and has been offered raises, but has been unable to
take them. If her wages increased, her Medicaid would increase.
Her rent, which is based on gross income, would also increase.
After taxes, she ends up with less to live on than before her
raise. She lives in subsidized housing because she can't afford
market rate rent. She drives a 1979 van and cannot afford to
replace it. Because of her Medicaid and the $3,000 asset limit,
she cannot participate in the matched savings retirement plan
available through her employer.
Then there is Charles, a man with severe cerebral palsy,
who developed an accounting partnership with another disabled
individual. He would be more than happy to pay his fair share,
if it was affordable to him, or as long as it is affordable to
him.
On a personal level, I was only able to work my way off of
Medicaid because I married a woman who was able to provide the
personal care assistance that I need. Not everybody is that
fortunate. Paying out of pocket for caregiving would cost me
over $30,000 a year. If my wife hurts her back doing transfers,
or becomes ill, we would have to divorce, and I would once
again have to impoverish myself to qualify for Medicaid.
Passage of the Work Incentives Act is both the right thing
to do, and the fiscally responsible thing to do. It is
important to remember that most people with severe disabilities
who want to work already receive Medicare and Medicaid, so
these costs are already incurred today.
There are a few other examples to the government if more
people with disabilities are able to work. Acute and primary
costs would be reduced for individuals on Medicaid and Medicare
who get employer-based insurance. Social Security cash payments
to people with disabilities would also decrease as they work
their way off the benefits. Other programs, such as HUD and
food stamps, would be reduced as well. Everybody benefits from
removing policy barriers to employment. Employers also benefit
from an extended pool of employees in a shrinking labor market.
And under the Work Incentives Improvement Act, employers would
not be expected to pick up more healthcare costs than they do
for non-disabled employees.
Finally, taxpayers benefit as people with disabilities
reduce their dependence on government programs. More people
with disabilities will become taxpayers themselves. People with
disabilities across the country are anxiously awaiting passage
of the Work Incentives Act of 1999, so they can go back to
work. Thank you very much.
[The prepared statement of T. Jeff Bangsberg follows:]
Prepared Statement of T. Jeff Bangsberg, Minnesota
My name is Jeff Bangsberg and I'm here on behalf of Minnesotans
with disabilities. I represent Courage Center, a rehabilitation center
headquartered in Minneapolis. I also serve as co-chair of the Work
Incentives Committee of the Minnesota Consortium for Citizens with
Disabilities (known as Minnesota CCD).
It is no exaggeration to say that the Work Incentives Improvement
Act of 1999 is as significant as the Americans with Disabilities Act
(ADA). Thanks to the ADA, many people with disabilities are being
offered jobs, but they cannot take advantage of those jobs because
barriers remain in their way.
First and foremost is the loss of health coverage. For some,
employer-based coverage is unavailable because they are self-employed
or because their disabilities prevent them from working full-time. For
others, coverage may be unaffordable due to co-pays or co-insurance for
repeated, ongoing treatments. For those who have affordable employer
insurance, coverage is often inadequate. Although employer-based
insurance pays for acute and primary care, it generally does not cover
specialized medications, equipment and supplies, personal assistance
services and other long term health needs.
Last spring, Minnesota CCD and the Minnesota Work Incentives
Coalition conducted a survey on health care barriers to employment of
people with disabilities. Almost twelve hundred persons with
disabilities completed the survey. The majority of respondents
indicated they would go to work or increase their employment if their
health care benefits would not be affected.
In addition to worrying about health care, people with disabilities
often face the prospect of losing cash assistance before they can earn
enough to make up for the benefits they lose. In particular, the SSDI
program's ``all or nothing'' approach leaves many people who go to work
with less money than when they were unemployed. After a nine-month
trial work period, someone who has an $800 SSDI check will lose their
whole check as soon as they earn $501 dollars per month. The ability to
deduct work-related expenses may cushion the blow, but for many, the
figures simply don't compute.
Now let's talk about the complexity of the system as it exists
today. People with disabilities who want to work are faced with a maze
of complicated, government rules and regulations, as well as a barrage
of acronyms and incomprehensible terms. You've got your TWP, your EPE,
your SGA, your FBR and your IRWE's. Then, you've got your MA
spenddowns, your 1619(b) thresholds, your Pickles and your Iamarino's.
Many people with disabilities have college degrees--some of them are
even rocket scientists--but nothing can prepare them for trying to find
their way through the bureaucracy.
The beauty of the Work Incentives Improvement Act is that it takes
a comprehensive approach in addressing all of these problems. I'd like
to tell you about a few of the people in Minnesota who would be helped
by this legislation:
Tom is a young man in his early thirties who is paralyzed from the
chest down like I am. Tom was a pipefitter prior to his accident. His
employer is willing to re-train him to do computer-aided drafting or
dispatching. Tom cannot accept this offer because he needs costly
personal assistance services that are only available through the
Medicaid program. Current regulations require him to impoverish himself
to retain Medicaid. The more he earns, the more he has to give back to
the government.Tom lives in an apartment building for the elderly and
hates being on public assistance, but he has no choice under the
current system. According to Tom: ``Being able to go back to work and
make a living as I was before my injury would be the best medicine ever
out there.''
A woman named Deb is faced with the same issues. Deb works and has
been offered raises, but is unable to accept them. In Deb's words: ``If
my wages increased, my Medicaid spenddown, which is based on gross
income, would increase. My rent which is also based on gross income,
would increase. After taxes, you end up with less to live on than
before your raise . . . I had been taught growing up that the American
Dream was to work hard, get ahead, and make a better life for yourself.
But the financial disincentives for working people with disabilities
make that impossible. I cannot strive for what everyone else wants out
of life. I cannot afford to have a house of my own. I live in
subsidized housing because I cannot afford market rate rent. I drive a
1979 van that I cannot afford to replace. I couldn't afford car
payments or an increase in automobile insurance. Because of my Medicaid
spenddown and the $3000 asset limit, I cannot participate in the
matched savings retirement plan available through my employer. I want
financial security for my retirement years.''
Then, there's Charles, a man with severe cerebral palsy who
developed an accounting partnership with another disabled individual.
They landed a significant contract with a local school district, but
can't keep much of what they earn. Charles asks: ``I was under the
impression that the state wanted everyone to work their way off of
assistance. But, how can one do so, when the laws are this way, and by
the time all of the bills are paid, we are so broke we barely have
enough to buy groceries? I would be more than happy to pay my share as
long as it remains a reasonable and livable amount a month.''
On a personal level, I was only able to work my way off of Medicaid
because I married a woman who is able to provide most of the personal
care assistance I need. Not everybody is that fortunate. Paying out of
pocket for my caregiving would cost over $30,000 per year. If my wife
hurts her back or becomes ill, we would have to divorce and I would
once again have to impoverish myself to qualify for Medicaid.
Passage of the Work Incentives Improvement Act is both the right
thing to do and the fiscally responsible thing to do. It is important
to remember that most people with severe disabilities who want to
return to work already receive Medicaid and Medicare, so these costs
are already being incurred.
Here are a few examples of potential savings to the government if
more people with disabilities are able to work:
<bullet> Acute and primary care costs will be reduced for every
individual on Medicaid or Medicare who gains employer-based
insurance.
<bullet> Social Security cash payments to persons with disabilities
will also decrease, as individuals work their way off those
benefits.
<bullet> Other federal expenditures will decline as people with
disabilities move off of programs such as Food Stamps and HUD-
subsidized housing.
Everyone benefits from removing policy barriers to employment.
People with disabilities will no longer be forced into poverty to
secure the long term health coverage they need. Employers also benefit
from an expanded pool of employees in a shrinking labor market. Under
the Work Incentives Improvement Act, employers would not be expected to
pick up more health care costs than they do for non-disabled employees.
Finally, taxpayers benefit as people with disabilities reduce their
dependence on government programs. More people with disabilities will
become taxpayers themselves.
People with disabilities across the country are anxiously awaiting
the passage of the Work Incentives Improvement Act of 1999 so they can
go to work. Congress can't afford not to pass the Work Incentives
Improvement Act this year. Thank you.
Mr. Lazio. Thank you very much, Jeff. And a special thanks
also to your Congressman, Jeff Ramstad, for his hard work in
moving this bill forward.
Mr. Brown. Mr, Chairman, for a moment?
Mr. Lazio. Yes?
Mr. Brown. Can I ask unanimous consent for--because these
two panels were combined--that we would get two rounds of
questions if we break for a vote? So people know when they come
back, that we would, if there was unanimous consent, that we
would get a second round of questions?
Mr. Lazio. Yes, I think, without objection, as long as
members wish to ask additional questions, and unless anybody's
got a particular time problem, we will try to accommodate
that--if one of the witnesses' have a time problem--but barring
that, that is so ordered.
Let me now turn to Tom Deeley, who is accompanied by his
father, Harold Deeley, and thank them very much for their
commitment in being here. Without any further delay, let me
recognize both Mr. Deeleys.
STATEMENT OF HAROLD DEELEY
Mr. Harold Deeley. Thank you, Mr. Chairman, and the other
members of the committee. My name is Hal Deeley. I am 73 years
old, and I am a former United States naval officer and a former
government patent attorney. I live in Annandale, Virginia, with
my wife, Sally, and our two sons, Tom, age 39, who is seated
here besides me, and Joe, age 34. Tom and I are here today as a
team, to express our support for H.R. 1180, the Work Incentives
Improvement Act, that is now being considered by this
committee. Our goal is to briefly tell you that, based on our
own life experience, working within the Social Security
Disability Income, SSDI, system, we believe that this Act
contains many needed improvements and deserves passage in the
106th Congress.
We are here today to urge you to support this legislation,
which will enable individuals with disabilities to improve
their employment status while maintaining needed healthcare
benefits that are not otherwise available. How will Tom be
impacted by the passage of the Work Incentives Act? First, Tom
is developmentally disabled, which is a more appropriate term
for those who, in the past, have been characterized as mentally
retarded. Today, if an individual with a developmental
disability works and earns enough to reach the ``gainful
employment'' income level, that worker will lose eligibility
for SSDI health benefits. That level is now set at only $500
per month. Because of the low income restrictions that are now
in place, most recipients of SSDI benefits are forced to work
part-time and remain underemployed. This is certainly true for
my son. Under the current SSDI system, the benefits of working
full-time, earning full-time wages, and becoming fully
productive members of society are lost to many with
developmental disabilities, because of the potential to lose
needed healthcare benefits.
The country also loses the benefit of including many
individuals into the full-time workforce that could become
productive taxpayers as well. Loss of healthcare benefits could
cause catastrophic consequences for many individuals with
developmental disabilities, and their families across America.
This is the case with my son. Tom now holds a part-time job
working at a Javits-Wagner-O'Day program performing custodial
services at the Defense Logistics Agency at Fort Belvoir,
Virginia. Tom is limited to working 2 days a week because of
the income limitations under SSDI, that, if violated, will have
an adverse impact on his health benefits. While working at the
DLA, Tom is fortunate to receive job supports from Fairfax
Opportunities Unlimited, a community rehabilitation service
provider, headquartered in Alexandria. I am also affiliated
with Fairfax Opportunities as a volunteer member of the
company's board of directors.
Many who know Tom will tell you that he is a hard worker
who is very eager to work full-time. Tom has been the recipient
of his company's employee of the year award for his work at the
DLA. When Tom was recently offered a cash award of $200 for his
work performance, he was forced to consider an alternative
award because of the impact of additional earnings. Of course,
Tom cannot accept a pay raise, because it would place him over
the income threshold to retain his current health benefits. I
hope that you will agree with me that this would be a
tremendous disincentive for any American in similar
circumstances who wants to work to better himself. I think it
is also important to note that his supervisor at the Defense
Logistics Agency is also very eager for Tom to come to work
full-time, and is disappointed that he can't because of the
limitations of the current system.
As a family, we are concerned that if Tom lost his SSDI
benefits, and then were to face a job reduction or loss, he
would face great difficulty in recovering the needed long-term
healthcare benefits that can be provided through Medicare,
supplemental income, and necessary job supports.
A developmental disability is a life-long condition. A
person does not recover, get better, or get over it.
Unfortunately, the SSDI system often assumes that they will.
The threat of the loss in healthcare benefits is a major risk
that we cannot ignore. Over the long-term, our family cannot
afford to place Tom's employment needs at a higher premium than
his healthcare needs.
Earlier I mentioned my age, because, like me, many parents
of the developmentally disabled are senior citizens, and their
adult children are often heavily dependent on their parents for
assistance and support. Most, if not all of us, continue to
worry about the long-term outcomes for our children as long as
we live. The provisions for Medicare coverage that are included
in this legislation will help provide my wife and me with an
improved peace of mind, and Tom with the benefits of increased
work incentives, and the opportunity for improving his
employment status.
Finally, in my role as a board member of Fairfax
Opportunities Unlimited, I am aware of a recent survey that FOU
conducted of 79 individuals who receive similar benefits to my
son, and are employed by the company part-time. Of that group,
63 percent expressed interest in working full-time if their
eligibility for healthcare and job support benefits could be
maintained. I think that this sample does help to illustrate
that this bill, which is now under your consideration, will
positively impact many that want to work, and want to work
full-time.
Now, as the second part of our team presentation, I would
like to ask Tom to say just a few words about what it means to
him to work as a productive American citizen.
[The prepared statement of Harold Deeley follows:]
Prepared Statement of Harold and Tom Deeley
Thank you Mr. Chairman and the other members of the Committee.
My name is Hal Deeley. I am 73 years old and I am a former United
States Navy officer and retired federal government patent attorney. I
live in Annandale, Virginia, with my wife, Sally, and our two sons--
Tom, age 39, who is seated beside me, and Joe, age 34.
Tom and I are here today as a team to express our support for H.R.
1180, the Work Incentives Improvement Act that is now being considered
by this Committee. Our goal is to briefly tell you that based on our
own life experience working within the Social Security Disability
Income (SSDI) system, we believe that this Act contains many needed
improvements and deserves passage in the 106th Congress. We are here
today to urge you to support this legislation which will enable
individuals with disabilities to improve their employment status while
maintaining needed health care benefits that are not otherwise
available.
How will Tom be impacted by the passage of the Work Incentives Act?
First, Tom is developmentally disabled, which is a more appropriate
term for those who in the past have been categorized as mentally
retarded. Today, if an individual with a developmental disability works
and earns enough to reach the ``gainful employment'' income level, that
worker will lose eligibility for SSDI health benefits. That level is
now set at only $500 per month.
Because of the low-income restrictions that are now in place, most
recipients of SSDI benefits are forced to work part-time and remain
under-employed. This is certainly true for my son. Under the current
SSDI system, the benefits of working full-time, earning full-time wages
and becoming fully productive members of society are lost to many with
developmental disabilities because of the potential to lose needed
health care benefits. The country also loses the benefit of including
many individuals into the full-time work force that could become
productive taxpayers as well. Loss of health care benefits could cause
catastrophic consequences for many individuals with developmental
disabilities and their families across America.
This is the case with my son. Tom now holds a part-time job working
on a Javits-Wagner-O'Day program performing custodial services at the
Defense Logistics Agency at Fort Belvoir, Virginia. Tom is limited to
working two days a week because of the income limitations under SSDI
that if violated, will have an adverse impact on his health benefits.
While working at the DLA, Tom is fortunate to receive job supports from
Fairfax Opportunities Unlimited, a community rehabilitation service
provider headquartered in Alexandria. I am also affiliated with Fairfax
Opportunities as a volunteer member of the company's Board of
Directors.
Many who know Tom will tell you that he is a hard worker who is
very eager to work full-time. Tom has been the recipient of his
company's ``Employee of the Year'' award for his work at the DLA. When
Tom was recently offered a cash award of $200 for his work performance,
he was forced to consider an alternative award because of the impact of
additional earnings. Of course, Tom cannot accept a pay raise because
it would place him over the income threshold to retain his current
health benefits. I hope that you will agree with me that this would be
a tremendous disincentive for any American in similar circumstances
that wants to work to better himself. I think it's also important to
note that his supervisor at the Defense Logistics Agency is also very
eager for Tom to come to work full-time and is disappointed that he
can't because of the limitations in current system.
As a family, we are concerned that if Tom lost his SSDI benefits
and then were to face a job reduction or loss, he would face great
difficulty in recovering the needed long-term health care benefits that
can be provided through Medicare, supplemental income and necessary job
supports. A developmental disability is a life-long condition; a person
does not ``recover,'' ``get better,'' or ``get-over-it.'' Unfortunately
the SSDI system often assumes that they will. The threat of a loss in
health care benefits is a major risk that we cannot ignore. Over the
long-term, our family cannot afford to place Tom's employment needs at
a higher premium than his health care needs.
Earlier, I mentioned my age because like me, many parents of the
developmentally disabled are senior citizens, and their adult children
are often heavily dependent on their parents for assistance and
support. Most, if not all of us, continue to worry about the long-term
outcomes for our children as long as we live. The provisions for
Medicare coverage that are included in this legislation will help
provide my wife and I with an improved peace of mind and Tom with the
benefits of increased work incentives and the opportunity for improving
his employment status.
Finally, in my role as a Board Member of Fairfax Opportunities
Unlimited, I'm aware of a recent survey that FOU conducted of 79
individuals who receive similar benefits to my son and are employed by
the company part-time. Of that group, 63 percent expressed interest in
working full-time if their eligibility for health care and job support
benefits could be maintained. I think that this sample does help to
illustrate that this bill which is now under your consideration will
positively impact many that want to work and want to work full-time.
Now, as the second part of our team presentation, I would like to
ask Tom to say just a few words about what it means to him to work as a
productive American citizen. Thank you.
STATEMENT OF TOM DEELEY
Mr. Tom Deeley. I would like to work 5 days a week.
Mr. Harold Deeley. Short, but sweet.
Mr. Lazio. I want to thank you both very much. Tom, you
must be a terrific employee and a real star.
Mr. Harold Deeley. He is, believe me.
Mr. Lazio. And now I'd like to turn now to Mary Gennaro,
who is the Director of Federal-State Relations at the National
Association of Developmental Disabilities Councils. I want to
thank you for your attendance and your preparation of
testimony, and now I'll turn and recognize you. Good to see
you.
STATEMENT OF MARY GENNARO
Ms. Gennaro. Thank you, Representative Lazio, and members
of the subcommittee, for the opportunity to testify. I have had
cerebral palsy since birth. I once received SSI benefits, and I
am now employed. I am anxious for enactment of the Work
Incentives Improvement Act, because I believe it will help more
people with disabilities to work. With about 75 percent of
people with disabilities not employed, one of the Nation's
largest minorities without jobs, we are needlessly wasting
vital, irreplaceable human potential.
Major barriers stand in the way of people with disabilities
who want to work. Some of these are: lack of access to vocation
and rehabilitation and employment services and supports, and
lack of choice regarding these services and providers; lack of
access to healthcare coverage; financial disincentives, and
complex rules regarding what happens to beneficiaries who work.
By giving people with disabilities choice, the ticket program
included in H.R. 1180 will increase access to VR and employment
services and supports. It will help more people with
disabilities to work. It moves us a step closer, but unless it
removes the fear that people will continue to have regarding
loss of healthcare benefits, it will not do what it promises to
do.
Healthcare coverage is the key. Current policies must
change so that people with disabilities are no longer forced to
choose between healthcare and work. People with developmental
and other disabilities may have part-time work, or low-wage
work, where private insurance is not available. If it is, it
may be too costly given their earnings, or maybe simply
inadequate to meet the needs that they have for healthcare. I
have seen people struggle with the difficult choices in the
current system. I have seen people held back, unable to fulfill
their potential. Government policies intended to help people
have too often served as traps, rather than tools, for
empowerment, and we are anxious to see that change.
The Work Incentives Improvement Act would address that in a
variety of ways. It provides for continued Medicare coverage
for DI beneficiaries who work, and this is not a matter of
adding new people to the program, which has been already
pointed out, but of continuing benefits, continuing coverage
for people who have been able to work their way off of cash
benefits. It allows people to make the choice for work. By
giving States the option to offer Medicaid buy-ins to people
with disabilities who earn over 250 percent of poverty, and
allowing States to increase the assets and resource limits,
H.R. 1180 will help people to work to their potential. People
with disabilities need to be assured that they will not lose
access to the critical therapies they need, personal care,
prescription drugs, and other supports and services that are
often vital to their ability to work in the first place. The
State options contained in the bill will assist and encourage
States to address this need. States will be able to help people
with disabilities who are employed to stay employed. And the
State and infrastructure grants will be able to assist and
encourage States to offer personal assistant services. Lack of
these services is often the major barrier to employment for
people with disabilities, particularly people with
developmental disabilities.
As you know, the bill also provides important beneficiary
protections, work incentives, planning and assistance in
outreach provisions, and demonstration projects that will
address other major barriers to work. It does not address all
the issues, no bill could, but it addresses the critical,
essential elements necessary to bring us a step closer in
positively changing the current environment. It is an important
step in removing barriers to work for people with disabilities.
And what it can do is help to erase prejudice and shatter myth
about our abilities to contribute in the workplace, and in
every area of life. People with disabilities are encouraged by
your support and are looking forward to swift, bipartisan
passage of this bill.
[The prepared statement of Mary Gennaro follows:]
Prepared Statement of Mary Gennaro, Director of Federal-State
Relations, National Association of Developmental Disabilities Councils
Chairman Bilirakis, Members of the Subcommittee on Health and
Environment, thank you for the opportunity to testify on the Work
Incentives Improvement Act of 1999. I am Mary Gennaro, Director of
Federal-State Relations of the National Association of Developmental
Disabilities Councils. I am also a person with a disability, namely
cerebral palsy, which limits my mobility and therefore, my employment
options.
NADDC is a national organization representing Developmental
Disabilities Councils that work for change on behalf of people with
developmental disabilities and their families. It promotes a national
policy to enhance the quality of life for all people with developmental
disabilities. A developmental disability is generally, defined as a
severe, chronic disability which occurs in an individual before the age
of 22 and results in substantial functional limitation in three or more
of the following areas of major life activity: self-care; receptive and
expressive language; learning; mobility; self-direction; capacity for
independent living; and economic self-sufficiency.
Developmental Disabilities Councils exist in every State as well as
in the District of Columbia, and the territories of America Samoa, the
Commonwealth of the Northern Mariana Islands, Guam and Puerto Rico.
Councils have been established pursuant to ``The Developmental
Disabilities Assistance and Bill of Rights Act.'' The purpose of the
Councils in each State is ``to promote, through systemic change,
capacity building, and advocacy activities--the development of a
consumer and family-centered, comprehensive system and a coordinated
array of culturally competent services, supports and other assistance
designed to achieve independence, productivity, and integration and
inclusion into the community for individuals with developmental
disabilities.'' In recognition of a great need for improvement and
change the only federal priority area ``The Developmental Disabilities
Assistance and Bill of Rights Act'' requires the Councils must focus
their work on is employment.
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\ The time to
take action to address this problem is now. When our nation's economy
is flourishing and unemployment rates are at all time lows we must take
serious steps to begin to break down the barriers preventing people
with disabilities from working. This would save taxpayers money, but
more importantly it would begin to allow people with disabilities to
more fully contribute their talents to the community.
---------------------------------------------------------------------------
\1\ Re-Charting the Course--A Report of the Presidential Task Force
on Employment of Adults with Disabilities, November 15, 1998.
---------------------------------------------------------------------------
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\ Disability
benefits provide a critical safety net to millions of people with
disabilities. The latest figures from SSA indicate there are 4.7
million individuals receiving Social Security disability benefits as
disabled workers, 700,000 as disabled adult children, 200,000 as
disabled widows and widowers; and there are 3.7 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. Other people receiving benefits have work potential and want
to work to the maximum extent of their abilities, but barriers prevent
all but a few from working. If enacted the ``Work Incentives
Improvement Act of 1999'' will take a significant step forward in
removing some of these barriers.
---------------------------------------------------------------------------
\2\ National Organization on Disability/Louis Harris Survey,
conducted April and May of 1998.
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Barriers to Employment for People with Disabilities
Some of the barriers that keep SSDI/SSI beneficiaries from working
are:
<bullet> Lack of access to vocational rehabilitation and employment
services and lack of choice in vocational rehabilitation and
employment services;
<bullet> Lack of access to health care coverage
<bullet> Financial Disincentives
<bullet> Work Incentives are Complex and Can Hinder Work Attempts
Removing these barriers will assist many people with disabilities
who can work to work. Some will be able to achieve economic self-
sufficiency; others will earn enough to move off of benefits, but will
require some ongoing support such as health care, personal assistance,
and housing subsidies. Still others will work to their maximum
potential and continue to need both some cash assistance as well as
other supports. For instance, over 150,000 people with very significant
disabilities have gone to work since supported employment was added to
the Rehabilitation Act in 1986, those with the most significant
disabilities are unable to move completely off benefits, but they are
given a chance to work to their potential. Many other people with
disabilities would benefit from removal of barriers to employment.
Barrier: Lack of Consumer Access to and Choice of Vocational
Rehabilitation and Employment Services and Providers
The ``Work Incentives Improvement Act of 1999'' recognizes the need
to improve access to vocational rehabilitation and employment services
and to allow consumers to choose their own providers and services as
they attempt to return to work or work for the first time. 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.
Providing beneficiaries with a ``ticket'' and allowing them to choose
their own provider and services will enable more people to get the
services and supports they need to work.
Establishment of a ``Ticket'' Program
NADDC believes that by establishing a Ticket to Work and Self-
Sufficiency Program the ``Work Incentives Improvement Act of 1999''
will improve access to services, improve the services and supports
people with disabilities receive and improve the results of those
services and supports--helping more people with disabilities to work.
In overwhelmingly passing H.R. 3433, the ``Ticket to Work and Self-
Sufficiency Act,'' by a vote of 410 to 1 in the 105th Congress, members
of the House have shown they understand the need for and benefits of
expanded access to and choice of services and providers. Giving
beneficiaries control over the rehabilitation process will assist them
in their efforts to succeed and will spur providers to improve
services. Beneficiaries must have the choice to obtain the services
they need whether provided by VR, private providers, or a combination
of both. Choice is important for all people with disabilities, some may
need assistance in exercising choice and such assistance must be easily
available through out the rehabilitation process.
H.R. 1180 will improve outcomes. Inclusion of milestone payments as
well as outcome payments is critical. Milestone payments will allow
more qualified providers to participate in the ticket program and
assist providers in providing services to people who may be harder to
serve. Extending payments over a 60-month period will also allow
providers to offer continued supports and services beyond initial
employment. People with disabilities often need vocational and
employment services and supports to assist them in maintaining
employment and dealing with changed circumstances on the job or related
to their disability. The ticket 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. Finally, an Advisory Commission will be important to the
success of the ``ticket'' program as well as the other work incentive
provisions of the ``Work Incentives Improvement Act of 1999.''
Barrier: Access to Health Care CoverageBarrier: 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
``ticket'' program will fail. Until they can be assured that working
will not threaten their ability to receive necessary health care
services, SSDI/SSI beneficiaries will not be able to take advantage of
what a ``ticket'' program could offer. Without provisions that will
allow sufficient access to health coverage, a ticket program will only
create the illusion of adequately addressing barriers to employment for
people with disabilities.
Medicare--SSDI beneficiaries who become employed need to know that
in doing do they will not lose Medicare coverage. 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. The average monthly cash benefit is $733. Many people with
developmental disabilities receive Social Security benefits as adult
dependents of their parents, who have retired, become disabled, or
died. To qualify based upon a parent's work history, the adult
``child'' must have become disabled prior to the age of 22. In
addition, many people with developmental disabilities have, through
years of sheltered, supported, or competitive work, earn their own
disabled worker's insurance coverage. (Note: Since the eligibility
criteria and work incentive provisions of the disability insurance
program are applied to all of these categories of adults, the term SSDI
(Social Security Disability Insurance) is often used, and is used here,
to encompass all of the Title II disability programs, even though it is
technically incorrect to use it as a term encompassing all categories
of adults who may be receiving disability insurance benefits.)
After an SSDI beneficiary has completed a nine month trial work
period and a 3-month grace period, over the next 36 month extended
period of eligibility cash benefits are suspended for any month in
which the individual earns $500 or more in income. (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 during the 36-month extended period of eligibility. 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, only 170 people
nationwide were enrolled under this buy-in program. We believe that the
premium cost is prohibitive for many people with disabilities.
People with developmental and other disabilities lose Medicare when
they may be earning as little as $500 a month. Yet their need for
health care coverage continues unchanged. People may be working to
their fullest potential at a part-time job, or at a full-time job with
limited earnings in which health care coverage is not offer or if
offered is too costly given their income. Or private insurance is not
available or adequate. These circumstances force beneficiaries to
choose between critical health care and a job. Only one choice is
possible and they, by consequence, remain trapped on benefits.
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. The personal care received
by a person with severe cerebral palsy, enabling them to bathe, eat,
dress and accomplish other activities of daily living can be the very
thing which makes employment possible. Medicaid covers personal care
services, which is not available through Medicare or private insurance,
but needing to meet the income and asset limits of Medicaid buy-ins
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 ends, 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, and 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 and individualized thresholds can also be applied. 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 developmental and other 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.\3\
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\3\ National Organization on Disability/Louis Harris Survey,
conducted April and May of 1998.
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Private insurance also does not offer personal assistance services,
a critical need for many people with developmental and other
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.
Providing Access to Health Care Coverage
H.R. 1180 addresses the very real concerns SSDI beneficiaries have
regarding loss of Medicare coverage when they work. For a ten-year
trial period it would allow SSDI beneficiaries who work to continue to
receive Part A coverage. It recognizes that 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 continuation of Medicare does not add new people
to the program; rather it maintains benefits for beneficiaries who have
been able to move off cash benefits. It saves the government money, and
frees people with disabilities to work secure in the knowledge that
doing so will not jeopardizing their life or health.
By giving states the option to offer a Medicaid buy-in to people
with disabilities who earn above 250 percent of poverty and allowing
states to increase the assets and resource limits under which people
can receive Medicaid, H.R. 1180 will remove a significant barrier to
employment. People with developmental and other disabilities will not
have to worry that increased earnings will mean the loss of health
care, personal care, prescription drugs or other necessary items or
services covered by Medicaid.
The ``Work Incentives Improvement Act of 1999'' will help people
with disabilities who are employed to stay employed by giving states
the option to continue Medicaid coverage for individuals whom SSA has
found to have medically improved. This would allow people who continue
to have a disability and are employed and have lost benefits due to
medical improvement, to continue to receive coverage. Critical health
care, such as prescription drugs, personal care, and other supports and
services that enabled their medical improvement and thus their
employment could continue. If these individuals are not able to obtain
coverage for these services and supports they will not be able to work
and therefore, need cash assistance as well as Medicaid. H.R. 1180 also
includes an important demonstration program which would allow states to
provide medical assistance 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. This will help
prevent the need for cash assistance.
H.R. 1180 will support and encourage states to develop systems to
provide the items, services and supports people with disabilities need
in order to work. Infrastructure grants will assist people with
disabilities to work by encouraging states to cover personal assistance
services under Medicaid. Lack of personal assistance services often is
major barrier to employment for people developmental and other
disabilities. Yet the availability of these services is limited.
Currently, only 31 states offer the more limited personal care option
through Medicaid.
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, 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.
Beginning to Address the Financial Disincentive Faced by SSDI
Beneficiaries
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. The ``Work Incentives Improvement Act
of 1999'' begins to address this by requiring SSA to conduct a
demonstration project under which SSDI benefits would be reduced by $1
for every $2 earned above a certain level. This demonstration would
also allow information to be gathered regarding payment for reduction
of benefits in the ``ticket'' program.
NADDC also supports language in H.R. 1180 calling for the General
Accounting Office to evaluate the coordination of work incentives for
individuals eligible for both SSDI and SSI. Disabled adult children who
receive both SSDI and SSI can experience great difficulties due to the
different work incentives in these programs. When they become eligible
for SSDI due to their parent's retirement, disability or death, this
increase in unearned income can lead to the loss of SSI and Medicaid
and act as a disincentive to work. A person with a severe disability
who needs some level of life-long support can't afford to work or
continue to work unless potential income is high enough to skip over
the ``income cliff'' in the SSDI program.
Barrier: Work Incentives are Complex and Can Hinder Work Attempts
Work incentives are often complex and difficult to understand and
it can be very difficult to get dependable, accurate information
regarding them. Given the risks that people with disabilities face
(loss of health benefits, lose of cash assistance, loss of other income
based assistance) when attempting to work, SSDI/SSI beneficiaries often
fear using work incentives. They fear overpayments, knowing that others
with disabilities have been surprised by overpayments of thousands to
tens of thousands of dollars, even when they had reported their
earnings to SSA. They fear that a work attempt will lead to a review of
their disability and put their eligibility for benefits in jeopardy.
They fear that if they fail at their attempt, or if they become unable
to work, but continue to have a disability they won't be able to
reestablish their eligibility for benefits. 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.
Protecting Beneficiaries and Helping Them to Use Work Incentives
It is critical that beneficiaries be able to use work incentives
without fear of loosing necessary support. They must be able to risk
the failure that often occurs before success. They must be able to try
in order to succeed. The ``Work Incentives Improvement Act of 1999''
assures that continuing disability reviews will not be scheduled solely
because of work activity. It also provides that work activity by a
person with a disability will not be used as evidence that he/she no
longer has a disability. Further, it provides for expedited
reinstatement of benefits when a person who continues to meet SSA's
standards for disability, finds him or herself unable to work.
The work incentives planning, assistance and outreach provisions of
H.R. 1180 are necessary elements in a comprehensive plan to remove
barriers to employment for people with disabilities. Community based
outreach will help assure that people with disabilities receive the
information and assistance they need to make the informed choices
necessary to prepare for, secure, maintain and advance in employment,
while at the same time accessing or maintaining access to necessary
health care and other supports and services. Requiring SSA to make a
greater commitment within its own program to have trained,
knowledgeable and accessible work incentive specialists will also help
beneficiaries to successfully use work incentives. It will enable SSDI/
SSI beneficiaries as well as community-based planners to obtain
reliable information and assistance. H.R. 1180 recognizes the
importance of giving SSDI/SSI beneficiaries access to protection and
advocacy services. This will assist people with a variety of issues and
difficulties, which can arise as they navigate through a new way of
assisting people with severe disabilities to work. If such assistance
is not available people with disabilities will not be able to fully
take advantage of the ``ticket'' and work incentives.
An Opportunity for Change
The ``Work Incentives Improvement Act of 1999'' would be a great
step forward in assisting people with disabilities to move into
employment and reduce their dependence on benefits and other
assistance. It does not address all issues, no bill could. It addresses
critical elements necessary to bring positive change, while balancing
the concerns of key stakeholders, taking an important step forward to
remove barriers to employment for people with disabilities.
NADDC believes that as we move forward and break down barriers to
employment for people with disabilities we will also promote the
independence, productivity, and integration and inclusion into the
community of people with developmental disabilities and other
disabilities. Enacting the ``Work Incentives Improvement Act of 1999''
will assist in continuing efforts to erase prejudice and shatter myths
about the ability of people with disabilities to contribute in the
workforce and in every area of life. Thank you for introducing this
important legislation, we encourage it enactment. We must not pass up
the tremendous opportunity we have to begin breaking down barriers and
changing lives for the better.
Mr. Lazio. Thank you very much.
The next individual to testify is Allan Bergman, and I
welcome you to the committee. Mr. Bergman is the President and
CEO of the Brain Injury Association. I now recognize you for
your statement. Thank you for being here.
STATEMENT OF ALLAN I. BERGMAN
Mr. Bergman. Thank you, Mr. Chairman. Members of the
committee, I am Alan Bergman, President and CEO of the Brain
Injury Association. I am also Deanna Bergman's father, a
daughter with disabilities of 34 years, and Mindy Pearlman's
stepdad, a young woman of 27 years with disabilities. So I've
sort of walked all sides of this system, professionally and
personally, for a number of years. In the world of traumatic
brain injury.
I'm sorry to report to you, we are adding to the long-term
disabilities rolls at about 90,000 individuals per year. There
are now about 5.1 million children and adults with long-term
severe disability from traumatic brain injury, and we all are
potentially members of that club at any given moment, as a
newspaper reporter mentioned to me very recently, potentially a
car crash or a banana peel slip away, and many of these folks
do end up on the SSI or the SSDI rolls.
What I'd like to do in the few minutes in the oral
testimony is look globally at what we've been discussing here
today, which is the major disconnect between national
disability civil rights policy, as referred to in the Americans
with Disabilities Act, and our Federal disability employment
policy, which is nested in SSI and SSDI, going back to 1956 and
1972 when people like Jeff and Mary were seen in a very
different light and were, very frankly, looked at by the
Federal Government as eternally dependent.
I think you have a flavor for what is going on here. We
have a revolution in the world of disability in terms of what
the opportunities now really can be, not in theory, but in
practical life. People with disabilities do want to work. They
are capable of working. You've heard about the technology;
there is also job accommodation, job restructuring, job
sharing. We have all kinds of techniques, but the real issue,
as my colleague, Tony Young, said a couple of years ago, is we
need a Federal policy that makes work pay for people with
disabilities and stops punishing people with disabilities for
wanting to contribute to American society.
That is what this piece of legislation begins to do, and we
move from paternalism and maternalism and dependency to a
policy that talks about economics, empowerment, contribution,
and independence. Yet, with the best of intentions, over 8
million working-age adults with severe disabilities are not
benefiting from the booming economy or the lowest unemployment
rates in our history. Something is clearly wrong, and this bill
begins to address it.
You have heard of the Harris Poll, referred to by several
members earlier. Let me give you the healthcare data within
that same Harris Poll. Among those people with disabilities who
are insured, 32 percent say they have special needs because of
their disability, such as therapies, equipment, or prescription
drugs, not covered by the employer-based health insurance.
These are folks who are working, who are paying a price in
order to stay employed. Among adults with disabilities not
covered by health insurance, 18 percent were not able to get
insurance because of a disability or pre-existing health
condition, in spite of the enactment of the Health Insurance
Portability and Accountability Act, another disconnect with a
well-intended policy to break down the barriers. So, we've
still got lots of things to deal with.
Most people with disabilities are not going to be employed
by Fortune 500 companies or the government. They are going to
be employed, as you know, by the engines of this economy, small
business, medium-size business, where most of the jobs are
being created. And in those situations, as you've heard, the
employer doesn't offer a group plan; the premium is very high
in relation to the person's salary; the benefit package is very
restricted or limited, and certainly doesn't offer personal
assistant services, because none of them do, and, in addition,
we often face a rigid definition of medical necessity, having
to do with only restoration and not maintenance of function.
So, those things continue to be barriers in the commercial
market.
So, continuous, affordable access to Medicare or Medicaid
is absolutely essential if we want to assure equal opportunity
for people with disabilities to join the workforce using
Medicaid and/or Medicare as a wrap-around to the benefits, if
they are provided. So, the time is now, and we have to move
from the 1960's when severe disabilities was a synonym for
helpless, hopeless, homebound, and eternally dependent. I think
the moral and economic imperatives of 1999, and the new
millennium we are approaching, demand that we shift our
economic support and health insurance public policies for
people with disabilities to one consistent with the wishes,
needs, and increased expectation of people with disabilities
and the tenets of the ADA.
As a society, we cannot afford to waste a human life and we
can't afford to wait any longer. H.R. 1180 moves us toward a
21st century policy, making severe disability a new synonym
with personal responsibility, choice, empowerment,
interdependence, contribution, and economic self-sufficiency.
With this as a first step, we can begin to reframe disability
policy as a social and economic investment with a valued
performance outcome. Very simply stated, as economic and
productivity and contribution and value, and a better society
for all of us.
[The prepared statement of Allan I. Bergman follows:]
Prepared Statement of Allan I. Bergman, President and CEO, Brain Injury
Association, Inc.
introduction
My name is Allan Bergman. I am the President and Chief Executive
Officer of the Brain Injury Association (BIA). Founded in 1980, BIA is
the only national non-profit association dedicated to the full range of
issues related to traumatic brain injury: from trauma care to community
integration and appropriate supports for persons with brain injury,
their families and caregivers. BIA's mission is to create a better
future through prevention, education, research and advocacy. What began
as a small group of concerned family members and professionals has
grown into a national organization with 43 State Associations, over 800
local support groups and thousands of individual members.
I have been a professional in disability for 31 years and have been
privileged to help create opportunities which have resulted in great
strides in the perception of and actual capacity and contribution of
persons with disabilities--intellectual, cognitive, physical, sensory
and psychiatric. During the past fifteen years, I have devoted a
significant portion of my career to disability and health policy--both
acute care and long term care--as well as the opportunities and
challenges in the use of managed care technology for people with
severe, lifelong disabilities and chronic illnesses. I also bring the
perspective of the father of a young woman with disabilities in the
work force and a step-daughter with severe and multiple disabilities
who is contributing to her community in a very responsible fashion
everyday in return for her public benefits.
On behalf of BIA, we are pleased lend our support to H.R.1180, the
``Work Incentives Improvement Act of 1999,'' and commend its lead
sponsors, particularly Congressman Rick Lazio, Commerce Committee
Chairman Thomas Bliley, Health Subcommittee Chairman Mike Bilirakis and
Ranking Member Sherrod Brown, as well as Congressmen Henry Waxman,
Nancy Johnson, Jim Ramstad, Mark Foley and Bob Matsui. We also
appreciate the many other cosponsors on both sides of the aisle for
this very significant piece of legislation that will enable many
Americans with disabilities who want to work, to be able to do so with
incentives, choice and no risk of losing their vital health insurance
for prescription drugs, therapies, durable medical equipment, mental
health services and personal assistance services. The sponsors and
their staffs have worked very closely with members of the disability
community and other stakeholders, as well as with many members of the
Senate who cosponsored S. 331, to reach the consensus we now have on
this critically needed legislation. We are also pleased to note the
support of President Clinton and the Administration as part of the
President's FY 2000 Budget.
In compliance with Commerce Committee Rules, attached is a copy of
my resume along with a statement regarding BIA's federal funding last
year.
traumatic brain injury
Traumatic brain injury (TBI) is defined as an insult to the brain,
not of a degenerative or congenital nature but caused by an external
physical force, that may produce a diminished or altered state of
consciousness, which results in an impairment of cognitive abilities
and/or physical functioning. TBI can also result in the disturbance of
behavioral or emotional functioning.
TBI is the leading cause of death and disability of young people in
the United States. Almost one half of all TBIs result from
transportation-related incidents. Most of the remainder result from
falls, assaults, sports and recreation and firearm-related injuries.
Each one of us, the members of our families, and our friends are at
risk everyday of joining this population!
Long known as the ``silent epidemic,'' TBI can strike anyone--
infant, youth or elderly person--without warning, and often with
significant and life long consequences. TBI affects the whole family
and often results in huge medical and rehabilitation expenses over a
lifetime. Advances in medical technology and improvements in regional
trauma services have increased the number of survivors of TBI. Thus,
daily a growing pool of persons with disabilities and their families
must deal with the social consequences and medical challenges of the
road to recovery.
An estimated 2 million Americans experience traumatic brain
injuries each year. About half of these cases result in at least short-
term disability, and 51,000 people die as a result of their injuries.
Each year, approximately 260,000 persons require hospitalization for
TBI (30% of which show disabilities a year post injury), and over 1
million people receive emergency medical care for TBI. The Brain Injury
Association estimates the cost of TBI in the United States at more than
$48 billion annually. Every year about 90,000 people sustain severe
brain injuries leading to long term disability. CDC has recently
estimated that there are 5.1 million persons living with long term,
severe disability as a result of brain injury and as many as 6.5
million person living with some form of injury including mild and
moderate brain injuries.
A recent report on TBI Rehabilitation prepared by the Oregon Health
Sciences University for the NIH Consensus Conference on TBI in October
1998, states that ``Class II evidence indicates that supported
employment can improve the vocational outcomes of TBI survivors.
(Studies rated as Class II are randomized controlled trials [RCTs] with
design flaws, well done, prospective, quasi-experimental or
longitudinal studies, and case control studies).
Many persons with long term disability as a result of TBI want to
work and are capable of remunerative employment with appropriate
supports. In order to remain employed, however, persons with TBI, like
most people with disabilities, need consistency and continuity of
health care services and long term supports. The need for these
services is documented in a February 27, 1998, U.S. General Accounting
Office Report to the Honorable Thomas J. Bliley, Jr., Chairman,
Committee on Commerce of the House of Representative and the Honorable
James Greenwood of the House of Representatives (GAO/HEHS-98-55). The
report states that ``both the private and public sectors finance acute
care services to adults with TBI. When the individual progresses past
the acute phase, private health insurance typically limits coverage of
rehabilitation therapies and does not cover long term care or community
based support services. As families exhaust their financial resources,
the public sector pays for a greater share of the services received--
exceptions are those individuals injured on the job and thus covered by
worker's compensation.'' Many individuals with TBI access public
benefits only after their health insurance policy lifetime cap of
$500,000 or $1 million is met within 3-5 years after the injury.
historical policy context
How did we get here and why is this legislation necessary?
A. Social Security Disability Insurance (SSDI)
The SSDI benefit was created as a social insurance program as an
amendment to the Social Security Act in 1956, for workers ages 50-64
who become ``disabled.'' In 1960, it was amended to include workers
under the age of 50 who become ``disabled'' who had paid into the trust
fund for 20 of the previous 40 quarters. In 1956, benefits also were
extended to children with disabilities over the age of 18 (DAC) of
retired, disabled or deceased workers, if the disability of the child
occurred prior to age 18. In 1973, consistent with changes in the
definition of developmental disabilities in the ``Developmental
Disabilities Assistance and Bill of Rights Act,'' the definition of the
child benefit was changed to age of onset prior to 22.
Generally, disability is defined as the inability to engage in
``substantial gainful activity'' (SGA) by reason of a physical or
mental impairment. The impairment must be medically determinable and
expected to last for not less than 12 months, or to result in death.
Applicants my be determined to be disabled only if, due to such an
impairment, they are unable to engage in any kind of substantial
gainful work, considering their age, education, and work experience.
The first step in the disability determination process for a worker
is to determine if the individual is engaging in SGA which for most
people is defined as more than $500 per month--nearly $2,000 per year
less than the federal poverty level. (In February 1999, the Social
Security Administration (SSA) proposed a regulatory change to increase
the SGA level for non-blind individuals from $500 to $700 per month,
the first increase since 1990 and the second since 1980.) The next step
in the process is to determine if the impairment is ``not severe''
(i.e. it does not significantly limit the individual's capacity to
perform work.) If the impairment is ``severe,'' a determination is made
as to whether the impairment ``meets'' or ``equals'' the medical
listings published in regulations by SSA and whether it will last for
12 months. The process continues through numerous steps. SSDI benefits
are not paid until the beginning of the sixth full month of disability.
As of December 1998, there were 4.698 million persons receiving SSDI
with an average monthly benefit of $733. Unfortunately, the number of
SSDI beneficiaries working in September 1997, was only 318,728 (or 6.1%
of the SSDI caseload). The percentage of people with disabilities
earning over $500 per month after trial work period and extended
eligibility is 0.33%.
The age distribution and medical listing categories are depicted in
the charts below from the SSA.
Table 1-31.--Percent Distribution by Age, Sex and Education of Title II Disabled Beneficiaries Granted Benefits In Selected Calendar Years 1970-96,
Compared With Adult U.S. Population in 1990
--------------------------------------------------------------------------------------------------------------------------------------------------------
Year granted benefits
Characteristics -------------------------------------------------------------------------------------------------- Adult U.S.
1970 1975 1979 1982 1985 1988 1989 1990 1991 1992 1993 1994 1995 1996 population \1\
--------------------------------------------------------------------------------------------------------------------------------------------------------
Age
Under 35............................ 9.0 11.0 13.6 14.4 16.8 15.2 16.2 15.7 15.7 16.8 16.2 14.7 13.3 12.3 45.6
35-44............................... 11.0 10.0 11.5 12.3 15.0 16.5 17.9 18.7 19.6 20.4 20.9 20.7 20.4 20.4 24.4
40-54............................... 26.0 26.0 27.2 26.5 25.7 23.3 24.7 24.7 25.1 25.6 26.8 27.7 28.3 29.7 16.3
55-59............................... 24 0 23.0 27.0 27.2 23.9 20.6 20.4 19.9 19.5 18.5 18.6 19.2 19.9 20.0 6.8
60 and over......................... 30.0 30.0 20.6 19.6 18.7 24.4 20.9 21.0 20.1 18.7 17.6 17.8 18.0 17.4 6.9
Median age (years).................. 56.0 55.6 53.4 53.1 51.7 53.3 52.1 51.9 51.4 50.5 50.3 50.8 51.3 51.3 32.9
Sex:
Male................................ 74 68 69 70 67 66 64 64 64 63 62 60 58.4 56.7 49.5
Female.............................. 26 32 31 30 33 34 36 36 36 37 38 40 41.4 43.2 50.5
Education (years of school completed):
No schooling \2\.................... 2 1 1 1 2 1 1 1 1 1 1 1 NA 1 1
Elementary school (1-8)............. 44 37 29 26 23 18 17 16 16 12 11 12 NA 10 9
Some high school.................... 46 52 55 56 59 59 60 62 62 50 45 55 NA 58 45
9-11.............................. 23 24 23 22 22 20 19 19 19 15 14 16 NA 16 11
12................................ 23 28 32 34 37 39 41 43 43 35 31 39 NA 42 34
Some college........................ 9 10 12 14 14 15 17 17 17 14 12 16 NA 3 45
Unknown............................. 0 0 3 3 2 7 5 5 5 23 31 16 NA 28 0
--------------------------------------------------------------------------------------------------------------------------------------------------------
\1\ Derived from 1990 census. Figures for age based on population aged 18-64. Figures for education based on persons aged 25 and over.
\2\ Also includes special schools for handicapped.
NA--Not available.
Source. Office of Disability, Social Security Administration.
Table 1-32.--Percent Distribution by Disabling Condition of Title II Disabled Beneficiaries Granted Benefits In Selected Calendar Years 1970-96
--------------------------------------------------------------------------------------------------------------------------------------------------------
Year granted benefits
Disabling Condition -------------------------------------------------------------------------------------------------
1970 1975 1979 1982 1985 1988 1989 1990 1991 1992 1993 1994 1995 1996
--------------------------------------------------------------------------------------------------------------------------------------------------------
Infective and parasitic diseases \1\.................. 3 1 1 1 1 0 1 6 6 7 7 6 6 5
Neoplasms............................................. 10 10 14 17 15 16 18 17 16 13 15 16 16 17
Allergic, endocrine system, metabolic and nutritional 4 3 3 4 5 3 3 3 4 5 5 5 5 5
diseases.............................................
Mental, psychoneumtic and personality disorders....... 11 11 11 11 18 22 22 23 24 25 26 24 22 22
Diseases of the nervous system and sense organs....... 6 7 8 9 8 8 9 9 8 8 7 8 8 8
Circulatory system.................................... 31 32 28 25 19 18 17 16 15 14 15 14 14 14
Respiratory system.................................... 7 7 6 7 5 5 5 5 5 4 5 5 5 5
Digestive system...................................... 3 3 2 2 2 2 2 2 2 2 2 2 2 2
Musculoskeletal....................................... 15 17 17 16 13 14 11 12 13 13 12 12 12 12
Accidents, poisonings and violence.................... 8 6 6 6 4 5 4 4 4 4 3 3 3 4
Other/unknown......................................... 2 3 3 2 11 7 9 5 5 5 5 6 6 6
Total percent \2\................................... 100 100 100 100 100 100 100 100 100 100 100 100 100 100
--------------------------------------------------------------------------------------------------------------------------------------------------------
\1\ Beginning in 1990, AIDS/HIV cases are included in this category.
\2\ May not add to 100 percent due to rounding.
Source: Office of Disability, Social Security Administration.
B. Medicare Linkage
After a two year waiting period, SSDI also entitles beneficiaries
to Medicare. In 1996, 4.8 million Americans with disabilities had
coverage under Part A and 1 million of them actually received
reimbursed services. Persons receiving SSDI may elect to enroll in Part
B. In 1996, 4.1 million SSDI beneficiaries enrolled in Part B and 3.3
million of them actually received reimbursable services.
If the beneficiary is successful in testing their ability to return
to work (``trial work period'' of up to nine months and a 36 month
``extended period of eligibility''), Medicare coverage continues as
long as the individual remains entitled to disability benefits. When
Medicare entitlement ends because the person is engaging in SGA, but is
still ``medically disabled,'' the person may purchase Medicare
insurance at a current premium of $317 per month for Part A and $43.80
per month for Part B.
Moreover, the Medicare benefit package does not offer prescription
drug coverage nor does it offer non-medical personal care or personal
assistance services; two critical and often costly benefits necessary
either singly or in combination for many people with disabilities to
work and to live in the community. In addition as a result of
amendments included in the Balanced Budget Act of 1997 (BBA), coverage
for therapies (physical occupational and speech/language) is capped at
$1,500 per year, which is detrimental to many persons with
disabilities.
C. Supplemental Security Income (SSI)
The Supplemental Security Income (SSI) program, Title XVI of the
Social Security Act, was enacted in 1972 as a means tested (income and
resource limitations) income assistance program. It replaced the former
Federal-State Programs of Old-Age Assistance and Aid to the Needy Blind
established in 1935 as well as the program of Aid to the Permanently
and Totally Disabled enacted in 1950. All but seven states--Arkansas,
Georgia, Kansas, Mississippi, Tennessee, Texas and West Virginia
provide some form of state optional supplementary payment.
To qualify for SSI payments, a person must satisfy the program
criteria for blindness or disability. Individuals with 20/200 vision or
less with the use of correcting lens in the person's better eye, or
those with tunnel vision of 20 degrees or less are defined as blind.
Disabled individuals are those unable to engage in any substantial
gainful activity by reason of a medically determined physical or mental
impairment expected to result in death or that has lasted, or can be
expected to last, for a continuous period of at least 12 months. The
test of ``substantial gainful activity'' is to earn $500 monthly in
counted income, with impairment-related expenses subtracted from
earnings. (SSA's February 1999 proposed regulatory change in SGA noted
on page 3 would also apply to SSI.)
At the end of 1998 there were 3,518,000 SSI recipients between the
ages of 18 and 64. In addition, there were 885,000 children under the
age 18 receiving SSI. The maximum SSI payment in 1997 was $484 per
month for one person and $726 per month for a couple. Less than two
percent of the 18-64 year old recipients are engaged in the section
1619(a) and 1619 (b) work incentive programs. Approximately 40% of the
SSI recipients between the ages of 18 and 64 also receive social
security benefits.
A breakdown of the SSI population by broad diagnosis is as follows:
TABLE 3-13.--Disability Diagnosis of SSI and Section 1619 Disability
Recipients. December 1996 \1\
[Percentage distribution by diagnostic group]
------------------------------------------------------------------------
Supplemental Security Income (SSI) \1\
---------------------------------------
Diagnostic group All SSI SSI section SSI section
disabled 1619(a) 1619(b)
18-64 yrs participants participants
------------------------------------------------------------------------
Infectious and parasitic 1.7 1.1 1.5
diseases.......................
Neoplasms....................... 1.4 1.3 1.6
Endocrine, nutritional, and 4.3 2.1 2.7
metabolic disorders............
Mental disorders:
Schizophrenia................. 8.9 9.6 11.6
Other psychiatric............. 21.5 19.3 20.0
Mental retardation............ 28.4 46.6 38.6
Diseases of:
Nervous system and sense 10.1 12.1 13.3
organs \2\.....................
Circulatory system............ 4.9 1.5 2.3
Respiratory system............ 2.7 1.0 1.0
Digestive system.............. 0.7 0.4 0.6
Genito-urinary system......... 0.9 1.1 1.6
Musculoskeletal system and 7.3 3.0 4.4
connective tissues.............
Congenital anomalies............ 1.7 0.9 0.8
Injury and Poisoning............ 2.7 2.2 3.3
Other........................... 2.7 1.3 1.2
---------------------------------------
Total percent............... 100.0 100.0 100.0
=======================================
Total individuals \3\....... 4,375,650 23,101 34,909
------------------------------------------------------------------------
\1\ Information on diagnosis of SSI disabled recipients under age 65 is
from the December 1995 SSI 10 percent disability file. Information on
diagnosis for section 1619 recipients is available from SSI source
files.
\2\ Most of the section 1619(b) participants who are classified as blind
individuals are included in this category. A few section 1619(b) blind
participants have a primary impairment other than diseases of the eye
and are coded in other categories in this table. Also, there are a few
participants classified as having diseases of the eye who are not
blind, whose impairment does not meet the definition of blindness, and
are classified as disabled.
\3\ Includes only recipients whose diagnosis information is specifically
identified on the source files.
Source: Office of Supplemental Security Income, Social Security
Administration.
D. Medicaid
Medicaid, Title XIX of the Social Security Act, was enacted in 1965
as a means tested program (income, assets and resources) of health
insurance and long term care. In all but 11 states (the section 209(b)
states of Connecticut, Hawaii, Illinois, Indiana, Minnesota, Missouri,
New Hampshire, North Dakota, Ohio, Oklahoma and Virginia) a recipient
of SSI is federally entitled to Medicaid. In the 11 states, the state
determines disability eligibility which may be more restrictive than
SSI criteria. Medicaid is a Federal-State matching funds program that
mandates a core set of benefits for all recipients and provides the
states the option of 34 additional benefits, many of which are very
important to persons with disabilities.
The mandated benefits are: Inpatient hospital services; Outpatient
hospital services;Rural health clinic (including federally-qualified
health center) services; Other laboratory and x-ray services; Nurse
Practitioner's services; Nursing facility (NF) services and home health
services for individuals age 21 and older; Early and periodic
screening, diagnosis, and treatment (EPSDT) for individuals under age
21; Family planning services and supplies; Physicians' services and
medical and surgical services of a dentist; and Nurse-Midwife services
The optional benefits are: (*denotes benefits often needed by
persons with disabilities) Podiatrists' services; Optometrists'
services; Chiropractors' services; Psychologists' services*; Medical
Social Workers' services; Nurse Anesthetists' services; Private Duty
Nursing; Clinic services; Dental services; Physical therapy*;
Occupational therapy*; Speech, hearing and language disorders*;
Prescribed drugs*; Dentures; Prosthetic devices*; Eyeglasses*;
Diagnostic services; Screening services; Preventative services;
Rehabilitative services*; Age 65 or older in IMDs; Inpatient
psychiatric services for under age 21; Christian Science nurses;
Christian Science sanatoriums; NF services for under age 21; Emergency
hospital services; Personal care services*; Home and Community-based
waiver services*; Transportation services; Case management services*;
Hospice care services; Respiratory care services*; and TB-related
services.
Today all states offer Medicaid beneficiaries the prescription drug
benefit.
The following states offer a personal care benefit; however, the
states define the amount, duration and scope of the benefit as well as
the provider standards and payment methodology and rates. Alaska,
Arkansas, California, Delaware, District of Columbia, Idaho, Iowa,
Kansas, Maine, Maryland, Massachusetts, Michigan, Minnesota, Missouri,
Montana, Nebraska, Nevada, New Hampshire, New Jersey, New York, North
Carolina, Oklahoma, Oregon, Rhode Island, South Dakota, Texas, Utah,
Vermont, Washington, West Virginia, and Wisconsin.
The passage of the Home and Community Based Services Waiver Option
(H-CB) in 1981, has permitted many persons with disabilities to leave
institutions and live in the community. In 1986, amendments to the H-CB
waiver authority added supported employment as a habilitation service
for persons previously institutionalized. The BBA of 1997 included an
amendment to allow H-CB waiver supported employment services to anyone
receiving H-CB services.
The BBA also included a provision allowing states to expand
eligibility for Medicaid to persons with disabilities who meet the SSI
disability ``test'' and are working, up to 250% of the federal poverty
level and to impose a sliding scale for premiums sharing.
the disability rights movement
The early years of federal disability policy focused almost
exclusively on establishing people with disabilities as citizens with
cash assistance, health insurance and the full protection of the United
States Constitution. As stated earlier, SSDI was enacted in 1956 and
SSI in 1972. It was not until 1973, that Section 504 of the
Rehabilitation Act was enacted to prevent discrimination against
qualified people with disabilities by entities receiving federal funds.
In 1975, this country enacted the Education for All Handicapped
Children's Act. In 1990, this country enacted landmark, internationally
acclaimed civil rights legislation with the Americans with Disabilities
Act (ADA). In the ADA, we declared that disability is a natural part of
the human condition which in no way diminishes the rights of and
opportunities for people with disabilities to participate fully in all
aspects of American life. We also declared that the barriers to
opportunity for persons with disabilities exists outside of the person
in the attitudinal, physical, social and economic environments.
As we approach the 21st century, we have an opportunity to move
toward real implementation of the intent of the ADA by beginning to
remove some of the major barriers to work for this nation's working age
adults with disabilities and the generations to come of children and
adolescents benefiting from their right to an education under the
Individuals with Disabilities Education Act.
People with disabilities want to work. People with disabilities are
capable of remunerative employment. With techniques of job
accommodation, job restructuring, job sharing and the use of assistive
technology and devices, people with the most severe disabilities can
and are working. We need federal policy that MAKES WORK PAY! And it
must re-craft disability from a policy of paternalism and dependency to
one which is based on economics, empowerment, contribution and
independence.
today's context: the need for change
Today, the United States economy is booming. Unemployment rates for
the country are at near all times lows and less than two percent in
many states.
Yet with the best of intentions, nearly 8 million working age
adults with severe disabilities are not benefiting from this prosperity
and seem doomed to a life of dependency and poverty at a cost to the
taxpayer of nearly $74 billion! If they are married and receive SSI
and/or Medicaid, we impose on these couples a spousal penalty that
makes the marriage penalty under the IRS code look like kindergarten.
As a nation we can do better. H.R.1180 affords us the opportunity to
change the disincentives and to disconnect the current link between
income support and health insurance. All of the surveys conducted with
working age adults with disabilities have reported the loss of health
insurance (Medicare and/or Medicaid) as the primary reason why they are
financially unable to return to work. The four other principle barriers
to work identified by the Consortium for Citizens with Disabilities and
the National Council on Disability are: the complexity of existing work
incentives; financial penalties of working; lack of choice in
employment services and providers; and independent work opportunities.
New data from a Louis Harris Survey for the National Organization
on Disability conducted in April and May of 1998, reports a continuing
part-time or full-time employment rate of only 29% for non-
institutionalized working age adults with disabilities compared to 79%
for the population. Yet the same survey indicates that 72% of those
persons who are unemployed state they would prefer to be working!
In the area of health care the Harris Survey reported the following
findings:
<bullet> Among those persons with disabilities who are insured, 32% say
they have special needs because of their disability (such as
particular therapies, equipment, or medicine) that are not
covered by their health insurance;
<bullet> 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 pre-existing health condition (in
spite of the enactment of the Health Insurance Portability and
Accountability in 1996).
These brand new data unfortunately confirm all previous studies and
surveys regarding employment and health care for people with
disabilities.
Through many of the ``Choice'' Employment Projects funded under the
demonstration authority of the Rehabilitation Act Amendments of 1992,
people with the most severe physical and multiple disabilities are
returning to work through an individualized process of personal
profiling and choice. However, we also know that in spite of these
individuals demonstrated ability, most are choosing to work part-time
in order to be sure not to lose their Medicaid. These choices represent
flawed national disability policy that H.R. 1180 begins to address.
common limitations of employer insurance
Most people with disabilities are not likely to end up on the
payroll of the federal or state governments or large Fortune 500
corporations which tend to have more comprehensive health care benefits
and the capacity to spread risk across a very large employee base. Most
people with disabilities are more likely to become employed by small or
medium sized businesses where most new jobs are being created in the
current economy, or because of the nature of their disability, work on
a part-time or intermittent basis.
In small or medium sized businesses, persons with severe
disabilities tend to encounter the following range of barriers to their
health care needs:
<bullet> The employer does not offer a group plan;
<bullet> The cost of the employer's group plan is very high in relation
to the person's income;
<bullet> The limited employer benefit package does not meet the needs
of the person with a severe disability in areas such as
prescription drugs, mental health services, durable medical
equipment/assistive technology, physical, occupational and
speech/language therapies and none offer personal assistance
services; and
<bullet> The health care package is constrained by a rigid definition
of ``medical necessity'' which is limited to services to
``restore'' health rather than to maintain function and/or
prevent deterioration or loss of function which is critical to
persons with disabilities accessing the benefit package.
Therefore, continuous and affordable access to Medicare and/or
Medicaid is absolutely essential if we want to assure equal opportunity
for people with disabilities to join the work force.
We are also beginning to see increased problems in access to health
insurance benefits for people with disabilities as a result of the
rapid expansion of managed care in the commercial, Medicaid and
Medicare markets. Increasing concerns about the impact of managed care
on people with disabilities and chronic health care conditions have
generated great interest by the disability community for Congress to
pass strong, enforceable patient protection legislation this session as
well.
the time is now
The linkage of SGA to access to Medicare and Medicaid represents an
outmoded policy from the 1960's when severe disability was a synonym
for helpless, hopeless, homebound and eternally dependent. The moral
and economic imperatives of 1999 demand that we shift our income
support and health insurance public polices for people with
disabilities to one consistent with the wishes, needs and increased
expectations of people with disabilities and the tenets of the ADA. As
a society we cannot afford to wait for the perfect bill that will solve
all of the barriers to employment for persons with disabilities.
H.R.1180 begins to lay a new foundation for disability employment
policy that provides incentives for people with disabilities to replace
some or all of their federal income assistance with a pay check; to pay
income taxes and FICA; and to maintain their Medicare and/or Medicaid
coverage at an affordable premium based on their earnings. This
foundation along with other provisions of H.R.1180 move us toward a
21st century policy that will begin to make severe disability a synonym
for personal responsibility, choice, empowerment, interdependence,
contribution and economic self sufficiency. With this first step, we
can begin to reframe disability policy as a social and economic
investment with a valued performance outcome and begin to remedy the
9th finding in the ADA:
``(9) the continuing existence of unfair and unnecessary
discrimination and prejudice denies people with disabilities
the opportunity to compete on an equal basis and to pursue
those opportunities for which our free society is justifiably
famous and costs the United States billions of dollars in
unnecessary expenses resulting from dependency and non-
productivity.''
Mr. Bilirakis. Thank you, Mr. Bergman, for your very
powerful statement.
Next, Mr. Steven Cooley. Steve is from my home area of
Clearwater, Florida. He is a Fellow, as I've already indicated,
on the American Board of Disability Analysts. Steve, before you
even start, I want to personally thank you for all the great
work that you are doing for many individuals with disabilities
down there. I know you are really strong in the rehabilitation
area. Please proceed, sir.
STATEMENT OF STEVEN R. COOLEY
Mr. Cooley. Chairman Bilirakis, ranking member Brown, and
members of the subcommittee, thank you for inviting me here
today to testify about the Work Incentives Improvement Act. My
name is Steven Cooley, and I am the legislative section chair
for the Florida chapter of the National Association of
Rehabilitation Providers in the Private Sector, known as
NARPPS. More importantly, I am a vocational rehabilitation
provider with firsthand experience and knowledge of the
barriers that Social Security beneficiaries with disabilities
face in their efforts to secure and maintain suitable gainful
employment.
In my experience, one of the most fundamental barriers is
the loss of access to affordable healthcare coverage. I believe
that this legislation will probably address that issue with the
proposed Medicaid buy-in, and the continuation of Medicare
coverage.
I am not an acadamian. I come before you with firsthand
experience, and not theory. I am out there on the front lines,
in the trenches so to speak, working with persons with
disabilities, assisting in their transition back to gainful
activity, and a productive lifestyle. I go into my clients'
homes, I sit down with them, identify barriers to employment,
and we develop strategies to overcome those barriers. We set up
job-seeking skills counseling, and I develop placement plans,
and actually put clients into my car and transport them to
interviews that I have arranged with prospective employers. It
is this perspective that I bring before you today.
Regardless of the disability status, the nature of their
impairment, or their vocational attributes, one of the most
common and significant barriers that I encounter in vocational
rehabilitation is the concerns of the individuals about he or
she's loss of access to affordable medical care. When
conducting a vocational evaluation, and providing
rehabilitation services to individuals receiving Social
Security disability benefits, whenever vocational alternatives
are discussed, or actually the process of returning to work,
some of the most common questions I am asked are, ``Are medical
benefits provided with this job? If medical benefits are
provided, how much will it cost me? Will I be accepted for
medical benefits with my pre-existing medical condition? If I
am accepted for medical benefits, will my pre-existing medical
condition be covered?''
Surprisingly, these types of questions are often asked
before my client asks about the nature of the employment
opportunity or even the wages for the job. Fear of losing these
benefits represents one of the biggest disincentives against
returning to work encountered in the field of vocational
rehabilitation. Not just for individuals receiving Social
Security, it is a universal concern. Concern regarding
continuity of medical benefits is an extremely difficult
barrier to overcome.
Upon returning to the workforce, many of the Social
Security disability clients that I work with are not likely to
secure high-paying jobs, and most of them know that. Most of
these individuals have ongoing medical concerns, and anticipate
future medical needs. When an individual is earning entry-level
wages, the cost of the very treatment or medication that are
necessary to enable them to return to the world of work are
often financially devastating. Even when employers provide
medical benefits within their setting, the cost to the worker
is often prohibitive. Many individuals in returning to work
actually experience less net income into their home than the
benefits they receive through Social Security disability
income. From the perspective of the SSDI recipient, they have
very little to gain, and much to lose, by returning to work.
The specific impact of healthcare benefits coverage became
very apparent to me in 1994 when I participated in the Social
Security Administration's Project Network, which was a pilot
program that attempted to address some of these barriers we
have discussed. And at least temporarily they helped, as they
allowed access of SSDI recipients to private rehabilitation
providers. I do not know the final statistics of this Project
Network, but I do know that all of the clients I worked with
were highly motivated to return to work, and I think part of
their positive attitude was knowing that their healthcare
coverage was intact for a protected period of time while they
attempted to re-establish themselves in the workforce.
There is an old rehabilitation joke that goes something
like, ``How many rehabilitation providers does is take to
change a light bulb?'' Well, the answer is only one, but the
light must want to change. There is a kernel of truth to the
joke.
Most of the individuals with disabilities that I see are
motivated to return to work, but that light grows dimmer with
every barrier they must face, and it has been my experience
that the fear or concerns about losing healthcare coverage or
access to affordable coverage all but puts that light out.
On behalf of NARPS and all my fellow rehabilitation
professors out there in the trenches working with people with
disabilities and myself, I thank you for the opportunity to
come testify before you and share my feelings regarding this
act, and I will be available to answer questions at the
appropriate time.
[The prepared statement of Steven R. Cooley follows:]
Prepared Statement of Steven R. Cooley, National Association of
Rehabilitation Professionals in the Private Sector
Chairman Bilirakis, Ranking Minority Member Brown and members of
the Subcommittee, thank you for inviting me to testify on the Work
Incentives Improvement Act (H.R. 1180). My name is Steven Cooley, and I
am the legislative section chair of the Florida Chapter of the National
Association of Rehabilitation Professionals in the Private Sector
(NARPPS). More importantly, I am a vocational rehabilitation provider
who has firsthand knowledge of the barriers that Social Security
beneficiaries with disabilities face in their efforts to find and
maintain gainful employment. In my experience, one of the most
fundamental barriers is the loss of access to affordable health care
coverage. I believe that this legislation will properly address that
issue with the proposed Medicaid buy-in and the continuation of
Medicare coverage provisions.
As for my background, I am a Nationally Certified Rehabilitation
Counselor (CRC), Certified Vocational Evaluator (CVE), Certified Case
Manager (CCM), a Fellow of the American Board of Disability Analysts
(F-ABDA) and I am licensed as a primary rehabilitation and vocational
service provider in Florida, Georgia and Tennessee. I have been in
private practice as a rehabilitation provider for approximately fifteen
years. I conduct vocational evaluations, develop and implement
rehabilitation plans, develop and coordinate life care plans and
provide overall case management for individuals who have physical,
economic, educational, emotional, psychological or situational
impairments to help them return to functional and productive
lifestyles.
I am often called upon to provide expert testimony in State and
Federal courts on vocational and rehabilitation issues in workers'
compensation, medical malpractice, divorce, personal injury, wrongful
death and Social Security disability determination cases. I testify on
cases litigated under the Longshoreman Act, the Jones Act, Title 7
(EEO) and the American with Disabilities Act (ADA). In 1994, I
participated in the Social Security Administration's (SSA) ``Project
Network,'' an initiative to assist beneficiaries of Social Security
Disability Income (SSDI) to return to gainful activity. Additionally,
because current Florida workers' compensation law defers to Social
Security guidelines regarding disability determinations, many of the
individuals I work with through the worker's compensation system have
sought and are receiving SSDI benefits.
I am not an academician. I come before you with firsthand
experiences and not theory. I am out there in the trenches. I actually
go into the homes of those I assist in returning to work. I sit down
with them, identify the barriers they face, work with them to develop
strategies to overcome those barriers, provide placement assistance,
interview and job retention skills counseling and actually transport
them to interviews I have set up with an employer. It is this
perspective that I bring before you today.
Regardless of their disability status, nature of impairment, or
vocational attributes, one of the most common and substantial barriers
against returning to work that I encounter is concern by the individual
that he or she will lose access to affordable health care.When
conducting a vocational evaluation and/or providing vocational
rehabilitation services to individuals receiving Social Security
disability benefits, whenever vocational alternatives are discussed,
among the most common questions I have been asked, are:
<bullet> Are medical benefits provided with this job?
<bullet> If medical benefits are provided, how much will it cost me?
<bullet> Will I be accepted for medical benefits with my pre-existing
medical condition?
<bullet> If I am accepted for medical benefits, will my pre-existing
medical condition be covered?
Surprisingly, the above questions are commonly asked before
inquiries regarding wages or the nature of the work to be performed.
However, it does underscore the significance of medical benefits to
Social Security beneficiaries with disabilities. Fear of losing these
benefits represents one of the biggest disincentives against returning
to work encountered in the field of vocational rehabilitation; and not
just for the individuals receiving Social Security disability benefits.
It is a universal concern.
Concern regarding continuity of medical benefits is an extremely
difficult barrier to overcome. Upon return to the workforce, the
majority of the individuals receiving Social Security disability
benefits are not, at least initially, likely to command high wages, and
they are well aware of this fact. The majority of them either have
ongoing medical concerns or fear that they may need future medical
services.
When an individual is earning entry level wages, the cost of the
very medications or treatments which may enable them to return to work
can be financially devastating. Even when medical benefits are
available through an employer, the cost to the worker is frequently
prohibitive. For many individuals, returning to work may actually
result in less net income than they received through Social Security
disability benefits. From the perspective of the Social Security
beneficiary with a disability, it often appears they have much to lose
and little to gain by returning to work.
The specific impact of the loss of health care coverage became very
apparent to me when I participated in ``Project Network.'' This project
was a pilot program that attempted to address, at least temporarily,
the barriers that Social Security beneficiaries face by allowing them
to work with vocational rehabilitation professionals in the private
sector. I do not know the final statistics of the program, but I can
tell you that most of the individuals I assisted through the project
were eager to return to work, and I attribute much of the their
positive attitude to the fact that they felt secure that their medical
benefits would remain intact for a protracted period, while they were
re-establishing themselves in the workforce.
There is an old rehabilitation joke, that goes: How many
rehabilitation providers does it take to change a light bulb. Only one,
but first the light bulb must really want to change. There is a kernel
of truth to this joke. Most of the individuals with disabilities that I
see are motivated to return to work, however, their lights grow dimmer
with each barrier that they must face. My experience leads me to
believe that the concern regarding the loss of medical benefits all but
puts out that light.
On behalf of NARPPS, all of my peers who are out there in the
trenches and myself, thank you for the opportunity to appear before you
today to provide this testimony. I would be happy to answer any
questions at the appropriate time.
Mr. Bilirakis. Thank you, Mr. Cooley. Thank you very much.
You may not have heard the bells, I don't know, but we had
the first bells and now the second bell, which means we have
less than 10 minutes to get to the floor. There are four votes,
and the first one will be 15 minutes, and then the other three
will be 5-minute votes. So I am not sure really what that does
to us, but it probably takes us to about 5. Mr. Auerbach and
Mr. Gray, I apologize, but will you wait a little while, if you
don't mind?
Mr. Brown. You might find it curious that 15 plus 5 plus 5
adds up to 45.
Mr. Bilirakis. Well, I don't know. If we get back by 4:45,
fine; otherwise, it will be about 5. Thank you.
[Brief recess.]
Mr. Bilirakis. Let's go ahead and get started. I apologize
on behalf of all of us for the interruption, but also the fact
that members haven't returned. I mean this is a pretty hectic
place, I think some of you know that, but it is certainly not a
reflection on the issue itself and on this panel.
Mr. Auerbach, why don't we just go ahead and go over to you
now, sir, and your written testimony is a part of the record.
You can complement it as you wish. Please proceed.
STATEMENT OF ROGER AUERBACH
Mr. Auerbach. Thank you so much, Mr. Chairman. I appreciate
the opportunity to appear before you today to give a State
perspective on the health-related concepts embodied in the Work
Incentives Improvement Act of 1999.
First of all, I commend you highly on focusing on this
much-needed piece of legislation. You have heard testimony from
a lot of people about the numbers of people with disabilities
who are unemployed and who want the opportunity to go to work.
The major barrier to employment for disabled individuals,
but not the only barrier, is the fear of losing essential
health and personal assistance benefits. The current work
incentive programs of the Social Security Administration do not
sufficiently address these fears.
Oregon has implemented an employed persons with
disabilities program, pursuant to section 4733 of the Balance
Budget Act of 1997. Our program allows persons with
disabilities to go to work, and to work to their fullest
capacity, without fear of losing health and personal assistance
benefits.
While we impose a cost share on unearned income over $500 a
month and have a sliding fee scale premium payment for income
over 200 percent of the Federal poverty level, we pretty much
are guaranteeing a healthcare safety net for disabled workers
who cannot afford to risk this needed coverage. We are enabling
people to make a dramatic impact on their lives, and we thank
you very much for passing this legislation and giving our State
the opportunity to help the working disabled.
With this comprehensive bill before you, I know we will be
able to do much more for this deserving population to expand
opportunities for independence, increased income, and self-
esteem, to expand opportunities for more disabled persons to
become taxpayers, to expand the labor pool needed in most areas
of the country, and to expand the hopes and dreams of millions
of people who want their chance to make more meaningful,
societal contributions.
If this bill is passed, Oregon would seriously look at
expanding income eligibility above 250 percent of the Federal
poverty level, which we have already done, and expanding
coverage to disabled workers whose conditions have improved,
but still have an impairment.
From the standpoint of humanity and fiscal common sense, we
should enable people to work as long and as much as they can
and not drive them onto higher levels of public assistance.
We would use the grant to States to establish
infrastructures to expand our current efforts to counsel people
on how to best use current work incentive programs along with
these new opportunities to begin outreach to people to let them
know they really can go to work and retain essential health
benefits.
Oregon might also use the infrastructure money to address
other barriers to employment, affordable and accessible
housing, transportation, job readiness skills, and needed
support for job retention.
In the interest of time, and my hope to engage in a little
dialog, let me just state that we are very encouraged in the
legislation by the continuation of Medicare coverage for SSDI-
eligible individuals. We are very enthusiastic about the
proposed demonstrations. We are very supportive of the crucial
provisions allowing expedited reinstatement if employment is
lost, and employment not triggering continuing disability
reviews. These provisions send the positive message that we
want you to join the workforce and we will support your
independence by continuing your essential health and personal
assistance benefits.
I believe many States are interested in providing these new
options for working disabled individuals. However, I do want to
point out two big issues for States. First, most States are
nervous about potential costs to their budgets. Although the
bill defines a working person with a disability in Section
101(a)(2)(b) and 104(b)(1), it does not make that same
definition on 101(a)(1). State officials are nervous that could
allow people who work occasionally or really only enough to
qualify for benefit to be able to qualify for this program.
We believe that States should be allowed to have a less
restrictive definition of working, but at least be allowed to
define working at 40 hours a month at the Federal minimum wage.
We also believe that the age definition contained in the other
subsections, 16 to 64, should apply unless the State wants a
less restrictive definition.
Second, we believe the State should have the option to
phase in the program and not be required to implement a program
statewide from the first day they start it. As you have
acknowledged in this bill, and we appreciate that
acknowledgment, most States need to build infrastructures to
support the program and need time to develop them. States ought
not to have to ask for a waiver from HCFA in order to launch a
planned phase-in program.
Again, I thank you for this opportunity to bring a State
perspective to this bill, which has a potential to help so many
people in all parts of this country. We believe in what this
bill can do. We applaud you for investing energy in this
proposal, and we in Oregon stand ready to answer your questions
about both the philosophy and the operations of our existing
program. Thank you.
[The prepared statement of Roger Auerbach follows:]
Prepared Statement of Roger Auerbach, Administrator, Oregon Department
of Human Resources, Senior and Disabled Services Division
I am Roger Auerbach, Administrator of the State of Oregon, Senior
and Disabled Services Division. The division arranges and pays for
services for low-income Oregonians who need assistance with activities
of daily living; determines eligibility for Medicaid acute and long
term care services, food stamps and other cash assistance and health
programs; licenses, monitors and provides technical assistance to all
long term care service providers; investigates and acts on incidents of
abuse involving the elderly and disabled; administers the federal Older
Americans Act programs; assists disabled workers to obtain and retain
employment.
I very much appreciate this opportunity to testify on the Work
Incentives Improvement Act of 1999. As members of this committee, you
are to be commended for focusing on this much-needed legislation. This
is extraordinarily important legislation for a number of reasons.
First, it benefits people with disabilities, increasing their
opportunities for independence, increased income, and self-esteem.
Second, it benefits federal and state treasuries by allowing people
with disabilities to earn additional taxable income. Third, at a time
when employers are seeking talented workers, this population has many
to offer. Finally, serious consideration of legislation such as this
delivers new encouragement to millions of people with disabilities who
want their chance to make meaningful societal contributions.
You have asked me to present a state's opinion of the legislation.
Besides having worked in Oregon's state government for eight years, I
am a member of the executive committee of the National Association of
State Medicaid Directors, an affiliate of the American Public Human
Services Association. I also serve on the Board of Directors of the
National Association on State Units on Aging. I understand not only
what we are doing in Oregon, but also the aspirations--and fears--of
many other states.
Oregon's work on helping people with disabilities go to work
without losing Medicaid benefits began in the Summer of 1996. Then, the
director of Oregon's human resources department, Gary K. Weeks, called
for a stepped-up effort to help people with disabilities obtain and
retain employment. Director Weeks called together not only my division,
Senior and Disabled Services, but also the Vocational Rehabilitation
Division, the Adult and Family Services Division, and the Oregon
Employment Department. Subsequently, our Office of Alcohol and Drug
Abuse Programs and the Mental Health and Developmental Disability
Services Division became actively involved, as well. He reminded us of
some bleak statistics, most recently reported last year by the National
Organization on Disability. It reported a Harris Poll showing that 29
percent of people with disabilities ages 18 to 64 are employed compared
with 79 percent of the non-disabled population. Moreover, 70 percent of
unemployed people with disabilities say they want to work.
In planning for this new initiative, we spoke with many consumers
and advocates about why more disabled individuals weren't working. We
encountered a recurring theme: people were not working for fear of
losing health-care benefits; specifically, personal care attendant and
mental health drugs, which are costly and not ordinarily covered by
private insurance plans.
We began working with consumers and advocates to craft a plan that
would assist people with disabilities to retain essential Medicaid
benefits after they went to work. Our initial intent was to seek a
waiver from the U.S. Health Care Financing Administration (HCFA).
However, when Congress approved Section 4733 of the Balanced Budget Act
of 1997, State Option to Permit Workers with Disabilities to Buy-in to
Medicaid, we elected instead to seek an amendment to Oregon's state
Medicaid plan. (See appendices for explanation of Oregon's program).
From the perspective of a state administrator who regularly works with
talented people with disabilities who cannot risk the loss of Medicaid
benefits, this legislation was a breakthrough of breathtaking
proportion.
I also cannot say enough about the high level of cooperation Oregon
received from HCFA. People from HCFA's regional and central office
worked with us every step of the way, so much so that we consider them
as partners in this effort. Not only that, but the people at HCFA
approved our state plan amendment in what must have been record time,
just a few weeks after submission.
Although there is a great deal to address in this bill, I want to
focus on the concepts relating to continuation of health benefits.
Again, we hear over and over again from consumers and advocates that
the loss of health-care coverage is the No. 1 barrier to employment. We
enthusiastically support the concepts in this bill as it gives states
new, voluntary options to provide coverage for the working disabled. I
believe that many states will be interested in these options and
welcome the increased federal focus on this issue.
State Medicaid Options
The bill would allow states to cover people whose income exceeds
250 percent of the federal poverty level and have resources exceeding
$2000. We believe this is an excellent provision. Our current employed
persons with disabilities program takes advantage of the flexibility
afforded by Section 4733 of the Balanced Budget Act of 1997 to cover
people up to 250% of the federal poverty level. If this bill passed, we
would seriously consider raising the maximum income eligibility level.
We also used existing law to allow people with disabilities to retain
coverage and own greater assets. This bill also permits greater assets,
which people with disabilities, like the rest of us, should be able to
accumulate for children's college education or retirement or other
quality-of-life purposes.
We also support the bill's provision to permit states to provide
coverage for individuals aged 16 to 64 who cease to be eligible for
Medicaid owing to improvement of their condition, but who still have an
impairment and are employed. From the standpoint of humanity, and
fiscal common sense, it is only reasonable to enable people to work as
long as they can and not to drive them onto higher levels of public
assistance.
Continuation of Medicare Coverage
We are encouraged that the bill would continue Medicare coverage
for people with disabilities who are eligible for Social Security
Disability Insurance. These are typically people who have an
established work history and, therefore, are often the best candidates
for employment. This clearly sends the positive message that we care
about all people with disabilities, regardless of when their disability
occurred.
Grants to Develop and Establish State Infrastructures
We very much appreciate that this bill offers grants to states to
establish infrastructures to support people with disabilities. This
would allow states to do a better job of implementing policies for
people with disabilities, and then to evaluate what works best. It is
also important to note that this legislation will send a very positive,
but different, message to people with disabilities: we encourage you to
join the workforce and are going to support your independence by
continuing your health and personal assistance benefits; we will not
cut off your benefits and assume you are no longer disabled if you go
to work. It will take resources and varied communication efforts to get
this new message across. In addition, Social Security disability cash
benefits and existing ``work incentive'' programs will still exist and
people with disabilities need to know how this new law affects those
existing programs.
I also ask that you remember that discontinuation of health
benefits for people with disabilities is not their only barrier to
going to work. Other barriers include affordable and accessible
transportation, housing, and the need for job readiness training.
Grants to states will help people closest to those with disabilities
assess what is needed to help this often-overlooked population go to
work, achieve greater independence, and pay taxes.
Additionally, as important as it is to help people with
disabilities go to work, we also recognize that our job shouldn't end
with getting people ready for a job; grant funds could be used to
develop job-retention services which are critical to the success of
these programs. When people get jobs--all people--there can be
problems, whether they be conflict at the worksite, transportation
arrangements falling through, or interrupted child care. Any of these
can lead to a person losing a job. Disabled workers, who often don't
have recent work experiences, face these problems and more.
Medicaid Demonstration Projects for Workers with Potentially Severe
Disabilities
We are also very enthusiastic about the bill's proposed
demonstration projects to provide medical assistance for workers ages
16-64 who have potential disabilities. These are people who, if they
didn't receive Medicaid benefits, would see their health deteriorate
and soon be too disabled to work. We are very interested in helping
this population of working disabled individuals.
Elimination of Work Disincentives
For a large and growing population of Americans, this bill has been
a long time in coming. These people will tell you not only that the
loss of health and personal assistance benefits is the biggest barrier
to going to work, but that they live in fear that, should they go to
work, they will trigger what is called a ``continuing disability
review,'' which means the government will question whether they are
truly disabled. The Work Incentives Improvement Act says that although
the Social Security Administration will continue to perform such
reviews, these reviews will not be triggered by employment. This
provision is very important to the success of this program.
In Oregon, we have struggled with the question of what happens if a
person with a disability has gone to work only to find that his or her
job is lost to an economic downturn or to a worsening of the
disability. As you know, obtaining renewed eligibility for Social
Security disability can take months or years. In contrast, this bill
would entitle the person with the courage to go to work to expedited
reinstatement if employment is lost. This is a welcome safety net that
will show people with disabilities that they can work without totally
risking loss of benefits.
Work Incentives Planning, Assistance and Outreach; Demonstration
Projects
This bill is also helpful because it would direct the Social
Security Administration to set up community-based programs to
distribute work-incentives information to people with disabilities. The
bill also provides for helpful grants to state advocacy programs that
would give advice to those seeking information and assistance, such as
the Oregon Advocacy Center in my state. Further, we support the
provision allowing the Social Security Administration to conduct
demonstration projects under the SSDI program. The bill mandates SSDI
demonstration projects so that instead of a $500 earnings ``cliff,''
people would realize a $1-for-$2 benefit reduction on earnings over a
specified level, similar to the SSI disability program. This specific
demonstration deserves support.
State Concerns
As stated previously, I believe many states are highly interested
in providing these new options for working disabled individuals.
However, as much as we support these concepts, I do want to point out
two big issues for the states.
First, most states are nervous about the potential cost to their
budgets. Although the bill defines a working person with a disability
in Sections 101(a)(2)(B) and Section 104(b)(1), it does not have any
definition of working in 101(a)(1). State officials are nervous that
this could allow people who work occasionally, or only enough to
receive a benefit, to be able to qualify. We believe that states should
be allowed to have a less restrictive definition of working, but at
least be allowed to define working at 40 hours a month at the federal
minimum wage. We also believe that the age definition (16-64) contained
in the other subsections, should apply unless a state opts for a less
restrictive definition.
Second, we believe states should have the option to phase in the
program and not be required to implement a program statewide from the
first day that they start it. As you have acknowledged in this bill,
most states need to build infrastructures to support this program and
need time to develop them. States ought not to have to ask for a waiver
from HCFA in order to launch a planned, phased-in program.
Again, I thank you for this opportunity to bring a state
perspective to this bill, which has potential to help so many people in
every part of this country. We believe in what this bill can do, we
applaud you for investing energy in this proposal, and we in Oregon
stand ready to answer your questions about both the philosophy and
operations of our existing program for the working disabled.
Mr. Bilirakis. Thank you, sir, and Mr. Auerbach, on behalf
of all of us, thanks to the State of Oregon for using the
resource of that BBA 1997 provided. Possibly later on we can
get some of the details as to why you think some States are not
going into it.
Mr. Gray, please proceed, sir.
Mr. Auerbach. Thank you.
STATEMENT OF CRAIG E. GRAY
Mr. Gray. Thank you. Good afternoon, Mr. Chairman, members
of the committee. My name is Craig Gray. I am the Director of
Program Management for the Services for Independent Living
Division of UNUM Life Insurance Company of America, based in
Portland, Maine. I also sit on the Employers Subcommittee of
the President's Committee on Employment of People with
Disabilities.
I have been asked to comment today on behalf of the Health
Insurance Association of America, of which UNUM is one of 269
member companies who provide disability income, long-term care,
supplemental and health coverage to 150 million people.
I am a person with a disability that has made a successful
return to the workforce. Unfortunately, I am an example of the
exception, not the norm.
In my professional capacity and personal life I regularly
communicate in great depth with other people with disabilities
and employers, and while I cannot, nor would ever, profess to
speak for all people with disabilities, I would like to share a
few observations that I believe are generally true.
People are beginning to understand now, much more than even
just 5 years ago, that acquiring a disability doesn't mean that
one's life has come to an end; rather, it has entered a new
phase--a phase that many people find equally productive,
exciting, and fulfilling. In some cases they have an even
higher quality of life than they had before.
The general public is seeing people living successfully
with disabilities in many aspects of society. Advances in
assistive technologies enable people to participate in the
workplace. Advances in recreational programs have people with
disabilities recreating and competing in sports activities
right alongside their able-bodied friends.
They see people like Marilee Maitlin, Thomas Quasthoff,
Michael J. Fox, and Steven Hawking making valuable
contributions to society. They watch the Paralympic Games in
Atlanta. You can even see people with disabilities in TV
commercials and soap operas now.
With the advance in assistive technologies and medical
treatments, it is becoming more evident that disability is a
socially defined concept, that is, once traumatic injuries or
disabling conditions have been stabilized, the issues of
quality of life and productivity are determined by societal
norms and values.
The ADA has done a lot to remove many of the physical
barriers associated with disabilities. It is not the
attitudinal barriers and institutional barriers that we need to
address.
Attitudinal barriers are slowly beginning to change and
have come a long way in the 20 years I have been disabled, but
this will continue to be a long, slow process. Many attitudinal
barriers are the result of institutional barriers that tend to
perpetuate disability stereotypes and actually limit one's
ability to re-enter main stream society. One of the major
institutional barriers is the very real fear of losing your
health insurance when you return to work.
This is real for me. In 1984 I was working as a computer
programmer for an insurance company in Boston. I was recruited
by another insurer here in Washington, DC. I took the job and
the company actually moved me to an apartment in Annandale. I
reported to work, and on my second day I met with the company's
benefit manager who informed me that they would not be able to
provide me with health insurance.
It had not occurred to me to ask about health insurance in
the interview process. It had not been an issue or source of
concern with my previous employer, and I incorrectly assumed
that I would be covered the same as any of their other
employees.
You can imagine my frustration. I had no coverage, and my
new employer was not going to pay to move me back Boston. Had I
not been willing and able to take a huge risk and rely on my
own resources for a short period of time, I would have been
forced to return to the ranks of Social Security. I found
another job just as soon as possible and made sure that health
insurance was part of that package.
Now you have to understand that I am luckier than many
people who need personal assistance services and prescription
drug services to be able to work. Had this been a requirement
for me, I would probably still be out of work.
The Work Incentives Improvement Act of 1999 addresses
several areas that are significant barriers for people with
disabilities to return to work. It will eliminate several of
the disincentives to return to work and will also move us a
step closer to removing the attitudinal barriers that prevent
people with disabilities from making greater contributions to
society.
Of course, there are a number of practical issues that must
be dealt with. We suggest that the following factors be
considered in evaluating any return-to-work proposal: The
proposal should make it easier for employers to hire people
with disabilities and ease the cost and concerns of ADA
compliance. The proposal should be structured so it does not
harm the Social Security safety net provided to seniors.
Similarly, the proposal shouldn't place any additional burden
on the Medicare supplement market that would make coverage more
expensive or less available to seniors. Finally, expanded
definitions of disability and other changes in the Federal
programs should not be applied to private disability programs
where they may not be appropriate.
In general, we believe this proposal does a good job of
addressing the needs and concerns of people with disabilities.
We strongly encourage you to give additional thought to ways in
which employers can be encouraged and supported in their
efforts to hire people with disabilities.
I would like to note that my written testimony contains
detailed technical comments addressing this and other similar
issues. Thank you very much.
[The prepared statement of Craig E. Gray follows:]
Prepared Statement of Craig E. Gray, Director, Services for Independent
Living, UNUM Life Insurance Company of America
Good morning, Mr. Chairman and Members of the Subcommittee. I am
Craig Gray, Director of Program Management for the Services for
Independent Living division of UNUM Life Insurance Company of America,
based in Portland, Maine. While at Unum I have held various positions
including disability consultant in product development, customer
service, marketing, and communications. I currently serve on the
Employer Subcommittee of the President's Committee on Employment of
People with Disabilities. I have been asked to comment today on behalf
of the Health Insurance Association of America (HIAA), of which UNUM is
a member. The HIAA is the nation's most prominent trade association
representing the nation's private health care system. Its 269 members
provide health, disability, long-term care, and supplemental coverage
to more than 115 million Americans. UNUM is the nation's leading
provider of disability income insurance.
I am a person with a disability that has made a successful return
to the workforce. Unfortunately, I am an example of the exception,
rather than the norm.
In my professional capacity and personal life, I regularly
communicate in great depth with other people with disabilities and with
employers. And while I can not, nor would never profess to speak for
all people with disabilities, I would like to share a few observations
that I believe are generally true.
People are beginning to understand now, much more than even just 5
years ago that acquiring a disability does not mean that one's life has
come to an end. Rather, it has entered a new phase--a phase that many
people find equally productive, exciting and fulfilling. In some cases,
they have an even higher quality of life than they had prior to
acquiring a disability.
They see people living successfully with disabilities in many
aspects of society. Advances in assistive technologies enable people to
participate in the workplace. Advances in recreational programs have
people with disabilities recreating and competing in sports activities
right along side their able-bodied friends. They see people like
Marilee Maitlin, Thomas Quasthoff, Michael J. Fox, and Stephen Hawking
making valuable contributions to society. They watch the Paralympic
games in Atlanta. People with disabilities are even seen on television
commercials and soap operas.
Advances in assistive technologies and medical treatments are
helping to demonstrate that ``disability'' is a socially defined
concept. That is, once traumatic injuries or disabling conditions have
been stabilized, the issues of quality of life and productivity are
determined by societal norms and values. The Americans with
Disabilities Act (ADA) has helped to remove many of the physical
barriers associated with disabilities. It is now the attitudinal
barriers and institutional barriers that our society must address.
Attitudinal barriers are slowly beginning to change. In fact, they
have changed a great deal in the 20 years I have been disabled. But,
this change continues to be a long, slow process. Many attitudinal
barriers are the result of institutional barriers that tend to
perpetuate disability stereotypes and actually limit one's ability to
re-enter mainstream society. One of the major institutional barriers is
the very real fear of losing your health insurance when you return to
work.
This is real for me. In 1984, I was working as a computer
programmer for an insurance company in Boston. I was recruited by
another insurer here in Washington DC. I took the job and the company
actually moved me to an apartment in Annandale. I reported to work and
on my second day, I met with the company's benefits manager who
informed me that they would not be able to provide me with health
insurance. It had not occurred to me to ask about health insurance in
the interview process. It had not ever been an issue or source of
concern with my previous employer and I incorrectly assumed that I
would be covered on the same basis as their other employees.
You can imagine my frustration. I had no coverage and my new
employer was not going to pay to move me back to Boston. Had I not been
willing and able to take a huge risk and rely on my own resources for a
short period of time, I would have been forced to return to the ranks
of Social Security. I found another job just as soon as possible and
made sure that health insurance was part of the package.
Now you have to understand that I am luckier than many people who
need personal assistant services and prescription drug coverage to be
able to work. Had this been a requirement for me, I would probably
still be out of work. While the Health Insurance Portability and
Accountability Act of 1996 (HIPAA) helps increase access to coverage in
some specific situations, it is not a complete solution for all
individuals with disabilities.
Efforts to help workers with disabilities return to the labor force
have the potential to improve the lives of beneficiaries and strengthen
the financial position of the Social Security Disability Income (SSDI)
program. We fully support the goal of helping these individuals return
to full participation in the workplace. At the same time, we believe
that legislation designed to enable individuals with disabilities to
return to the labor force, while maintaining their access to important
federal health care benefits, should be carefully crafted to avoid
unintended adverse consequences. We would suggest that the following
general guidelines be considered in evaluating the impact of any
specific return-to-work legislation:
<bullet> The legislation should seek to support employers that hire
workers with disabilities and ease the cost of Americans with
Disabilities Act (ADA) compliance.
<bullet> The legislation should be structured and funded so as to avoid
adversely affecting the financing of the Medicare and Medicaid
programs.
<bullet> The legislation should not place requirements on the private
Medicare-supplement market that would increase the cost of
coverage to seniors.
<bullet> Expanded definitions of disability should not be inadvertently
applied outside the scope of the specific programs under
consideration.
With respect to the ``Work Incentives Improvement Act of 1999,''
H.R. 1180, we have two specific questions regarding its interactions
with other public and private insurance programs. We believe that an
understanding of the issues involved is important to evaluating the
real world impact of such legislation.
<bullet> If an SSDI beneficiary returns to work while continuing
Medicare coverage, what is the role of the employer's health
plan? Does the aforementioned role change if their earnings are
below the level defined for ``substantial gainful employment?''
Can Medicare be made primary to any employer-sponsored coverage
for these individuals?
<bullet> If an SSDI beneficiary returns to work on a trial basis
through the Ticket to Work program, would they be covered by
the employer's short-term or long-term disability plan? If the
beneficiary then proves unable to perform the duties of the
job, does the employer become responsible for disability income
benefits as a result of assisting the individual in returning
to the labor force?
We believe the sponsors should clarify their intent regarding these
issues as the legislation moves forward. We also have several specific
technical comments that we hope you will consider.
<bullet> We would strongly encourage adding a provision amending the
Medicare Secondary Payer rules (42 USC Section 1395y) to make
employer-sponsored coverage secondary to Medicare and Medicaid
coverage for those SSDI beneficiaries who return to the labor
force. This would directly support the goals of the ADA and the
Ticket to Work program by encouraging employers to actively
seek out workers with disabilities. This would not represent a
significant expansion of the Medicare program, because these
individuals, in the absence of a return to work, already would
be receiving Medicare benefits. It would also be consistent
with the current treatment of individuals with end stage renal
disease.
<bullet> The possibility of Medicare Supplement policies being allowed
to suspend premiums and benefits during periods of time in
which the policyholder is covered by an employer-sponsored
program should be considered. This would reduce premium costs
for beneficiaries while allowing them to keep their policies in
force. It would also prevent multiple sources of coverage
resulting in payments to providers that exceed their billed
charges, and would be consistent with the current treatment of
Medicaid coverage (42 U.S.C. Section 1395ss(q)).
<bullet> Title II, Subtitle B, Section 211 amends section 221 of the
Social Security Act (42 USC 421) by adding a new subparagraphs
(m). (B) and (C) of the new paragraph (m)(1) should be
clarified to indicate that they refer only to disability
benefit determinations under sections 202 and 223 of the Social
Security Act, and not to benefit determinations made under
private disability programs.
In addition, we would suggest that the following enhancements be
added to the legislation:
<bullet> The period of time during which expedited eligibility
determinations are made available to applicants who have
previously received SSDI benefits and attempted to return to
the labor force through participation in the Ticket to Work and
Self-Sufficiency Program should parallel the time during which
continued Medicare eligibility is available.
<bullet> An extended trial work period should be established for
participants in the Ticket to Work and Self-Sufficiency
program, during which a return to the SSDI rolls does not
trigger a second qualification period during which benefits are
not available. This should parallel the extension created for
Medicare eligibility.
<bullet> Beneficiaries who return to the SSDI rolls during the extended
trial work period should have their earnings histories
protected. In other words, their SSDI benefits should not be
reduced due to lower earnings during their return to the
workforce.
Again, I appreciate the opportunity to comment on this proposed
legislation on behalf of UNUM and HIAA. We support the concept that the
structure of the SSDI, Medicare and Medicaid programs should encourage
disabled beneficiaries to return to an active role in the work force.
The Work Incentives Improvement Act of 1999 addresses several areas
that are significant barriers for people with disabilities to return to
work. It would eliminate several of the disincentives to return to work
and would also move us a step closer to removing the attitudinal
barriers that prevent people with disabilities from making greater
contributions to society. We would strongly encourage you to give
additional thought to ways in which employers can be encouraged and
supported in their efforts to hire people with disabilities.
This Subcommittee's consideration of efforts to help workers with
disabilities return to the labor force have the potential to improve
the lives of beneficiaries and strengthen the financial position of the
SSDI program is an important step towards fully integrating Americans
with disabilities into the mainstream of our society, and strengthening
our social insurance safety net for all of our citizens.
Thank you Mr. Chairman and Members of the Subcommittee. We look
forward to working with you to ensure that the best possible
legislation becomes law.
Mr. Bilirakis. Thank you very much, Mr. Craig. We are going
to go through rather than a second round or anything of that
nature, apparently, there's only three of us, so maybe a 10-
minute questioning session here.
Mr. Bangsberg, I understand, has to leave at 5:30. So I
would ask my colleagues, if you have any questions of Mr.
Bangsberg, you might want to--I will yield to you now. Do you
have anything of Jeff?
Jeff, thanks for your testimony. Getting to your personal
situation, let me ask you, do you have private health
insurance?
Mr. Bangsberg. Yes, sir, I do. I do have private insurance
through my wife, and believe it or not, it does pick up most of
the expenses that I do have, including much of my supplies and
equipment that I have as well. However, it does not pick up
personal care assistance services, and I privately pay 2 days
out of the week for that service, and then, fortunately, my
wife cares for me and provides all of the other cares that I
need that a normal personal care assistant would do 7 days a
week, both morning and night, and to assist me with food
preparation as well.
So to answer your question, the insurance that I receive is
for much of my supplies and equipment, and any acute and
primary care costs that I incur, but as far as personal
assistance services, no, they will not pick up for those kinds
of costs.
Mr. Bilirakis. Well, now we heard Mr. Gray share with us a
couple of his personal experiences. I wonder what types of
barriers have you faced regarding your health care. Is there
anything you might want to share with us?
Mr. Bangsberg. Sure. I guess that the barrier that we see
in Minnesota is primarily the prescription drugs that we cannot
get for many people, and I think another magnitude is supplies
and equipment for most people who are trying to get
prescription drugs.
One thing that is very important to note, as I stated
earlier in my testimony, is that many of the people who are
disabled like myself are going to be on Medicaid or Medicare
regardless. In fact, the survey that I alluded to that is in
your packets indicates that 77 percent of those people that
were surveyed are on medical assistance and Medicare, and so
those individuals would not add an additional expense to this
program. In fact, we find that they would probably save
additional dollars to this particular program.
Mr. Bilirakis. Well, there would be additional revenue
coming into the treasury as a result of their working.
Mr. Bangsberg. Precisely. I think there is a few ways to
look at it. One is in the area of secondary disabilities, where
you find a person with a disability who is not working, and
with not being active, they become more sick, if you will, much
quicker, and they are not staying as healthy because they are
not living an active lifestyle and, in addition, depression and
chemical dependency becomes a secondary disability to those
individuals.
In addition to their primary care health insurance that
would be allotted to those individuals, that is another expense
that would be incurred by the medical assistance and the
Medicare system, these people would become sicker and use the
healthcare dollars much more frequently.
Mr. Bilirakis. Thanks, Jeff. Why don't we just go ahead and
excuse you. That way you can leave at your leisure. Thanks so
very much.
Mr. Bangsberg. Thank you very much, Mr. Chairman.
Mr. Bilirakis. I know you were not planning to stay here
for this hearing. You were here last week for the press
conference, and I know you had planned to return.
Mr. Bangsberg. It was my pleasure and I was more than happy
to stick on and stay around. I don't get this chance very often
and I am very thankful.
Mr. Bilirakis. You have honored us. Good luck to you.
Mr. Bangsberg. Thank you very much.
Mr. Bilirakis. Thank you, Mr. Bangsberg.
Mr. Gray, you brought up this point of making it easier for
employers to hire individuals with disabilities, and, of
course, you brought up the point of the Disabilities Act.
Basically, what we are saying is that the Disabilities Act
would require certain improvements on the part of the employer,
which would be costly, and so might deter their thought about
even hiring someone with disabilities; is that right? That is
your point?
Mr. Gray. That is correct.
Mr. Bilirakis. Yes, that is something that maybe we don't
think about. But can you imagine the problem we would run into
with some of the disabled community if we choose to make
exceptions in some cases? I don't know. I guess it is something
to think about.
Mr. Cooley, do you believe that the State of Florida is
likely to pursue the Medicaid optional expansions authorized
under this bill?
Mr. Cooley. I certainly hope that they do. I don't have any
personal insight, as I sit here today, that they will, but it
would certainly be my position to encourage them to do so.
Mr. Bilirakis. All right, you were aware of the provisions
of BBA 1997 I would imagine; right?
Mr. Cooley. Somewhat, yes.
Mr. Bilirakis. And did you inquire of the State why they
were not doing what Oregon is doing in terms of taking
advantage of it?
Mr. Cooley. Mr. Chairman, I actually have not had that
communication with them, as I sit here today. I assure you that
when I return back to Florida that will be one of my very first
initiatives this week.
Mr. Bilirakis. So, in terms of current initiatives at the
State level, what are they basically, and how would they be
enhanced with this legislation being enacted?
Mr. Cooley. I think one of the serious conflicts that
exists in Florida today is that the State Workers Compensation
system uses a Social Security Disability criteria for
determinations of permanent total disability, and for the
injured workers in the State everything is either all or
nothing. I believe that if we can get this legislation through,
passed, people won't be encouraged to seek total disability,
and with the benefits that will be continuing, we will be able
to get many, many more of the disabled population in our State
back to work.
Everybody I see, as I earlier testified, their major
barriers are whether or not they are going to have medical
coverage. I think if we can get the State to buy into this,
participate, it will certainly help us in Florida.
Mr. Bilirakis. Mr. Auerbach, you spoke of certain problems
with the BBA 1997 language that you feel probably has deterred
some States, and, apparently, did not deter Oregon, but you
were able to surmount them. Do you think that this bill would
take care of all of those problems?
Mr. Auerbach. Mr. Chairman, I don't think it will take care
of all of the problems. I wanted to highlight just two points
in my testimony. One was, again, the definition of working and
the fear of State budgets and actually biting off a bigger
chunk than they thought they would.
People want to work with this program. I have talked with
States from around the country. One of the things that happens
when you are one of the first out of the chute, people call
you. So we have spent a lot of time answering phone calls from
around the country.
States were asking, how did you make an estimate about how
much it is going to cost us? We have our State budget office
saying that this is going to be a lot more expensive than you
say it is going to be.
So that really the definition of who actually is qualified
and the definition of who actually is a working disabled
individual is a big question for States, and the other one, as
I said, is the ability to phase in the program, to be able to
build the infrastructure. I know my colleagues in Wisconsin, I
think, wouldn't be reluctant to have me say that has been their
concern; that they think that they are going to have a program
up and ready to go in certain areas of the State, but they
would like to be able to phase the program in across the State.
Mr. Bilirakis. All right; so those two particular areas----
Mr. Auerbach. Those are the two biggest areas.
Mr. Bilirakis. [continuing] you have repeated those areas?
Mr. Auerbach. Yes, sir.
Mr. Bilirakis. I am glad you did. Those would not be taken
care of necessarily by this legislation.
Mr. Auerbach. On this bill, that's correct. That's correct.
Let me just say----
Mr. Bilirakis. You would suggest maybe be a change in the
language of the legislation or changing the BBA language,
right?
Mr. Auerbach. Mr. Chairman, members of the committee, I
certainly would like to see some changes in the language of
this bill. I think this bill is much more comprehensive than
the Balanced Budget Act section was and really, again, affords
States more opportunities, more options. We are appreciative,
and let me speak on behalf of the other States, we are
appreciative of the fact that this is an optional program, that
it is going to be a partnership with the Federal Government,
but I think, again, that there is some hesitation about going
in without knowing exactly what all the ramifications are going
to be, and those are two issues where you can help us with
budget concerns.
Mr. Bilirakis. Well, Mr. Lazio is here and he hears you,
and I think that speaks well for what you said.
Mr. Brown.
Mr. Brown. Thank you, Mr. Chairman.
Mr. Bergman and Ms. Gennaro, your statements I thought--and
your written testimony--were particularly poignant I thought.
Let me cite a couple of things and ask you a question together,
if you would.
Ms. Gennaro, in your statement you wrote that people with
severe disabilities may have difficulties accessing coverage
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.
Mr. Bergman, you wrote that normally, quote ``The limited
employer benefit package does not meet the needs of the person
with a severe disability in areas such as prescription drugs,
mental health services, durable medical equipment, assistive
technology, physical, occupational, and speech language
therapies, and you underline none offer personal assistance
services, and the healthcare package is constrained by rigid
definition of medical necessity which is limited to services to
restore health, rather than to maintain function or prevent
deterioration or loss of function, which is critical to persons
with disabilities accessing the benefit package.''
Talk about this rigid definition of medical necessity
preventing people with disabilities from accessing many
healthcare benefits, since obviously people with disabilities
almost always have conditions that cannot be restored, if you
would both elaborate on that.
Ms. Gennaro. Well, for instance, someone may need physical
therapy that just maintains the functionability at which they
have been able to progress, and it is important to maintain
that, to maintain their mobility or whatever abilities they
have been able to attain. The therapy may not be making them
improved, but it is maintaining motor functions that they have,
and losing certain functions can have a great impact on the
different abilities that they have in other areas of their
lives.
But it is not the way typically that insurers would look at
that in terms of maintaining the abilities that you have and
the necessity of that, and it is not just physical therapy; it
is also work in rehabilitating people and helping them learn
skills and tasks and helping them just maintain safe living in
their communities, and so forth.
Mr. Brown. And in most cases insurance would not cover
that?
Ms. Gennaro. Well, you would have to----
Mr. Brown. Would not consider that a medical necessity?
Ms. Gennaro. Well, you often have to, I think, argue with
them over what is and isn't medically necessary. I think this
comes up often with managed care and trying to get covered what
needs to be covered.
Mr. Brown. Mr. Bergman.
Mr. Bergman. Yes, let me take another shot at it and make
it concrete, if I may. I think traditional health insurance
comes from an accident and health indemnity model, and that is
what most commercial insurance still is framed on, which looks
at restoration.
So, for example, if one of us who is temporarily abled-
bodied breaks an arm or breaks a leg, and you get it casted or
you get it put in a sling or they put a pin in, whatever the
medical end of it is, usually what is going to happen is you
are going to get a prescription for physical therapy for
restoration of function, whether it is your leg or your arm,
and you are going to go see the PT. It is probably a capped
benefit for 15 sessions, at which point you are probably
restored pretty good and the therapist is going to say go home
and squeeze the ball, do some stretching, but you got about 95
percent restoration, go have a nice day, end of benefit, end of
coverage.
For somebody who has a neuromuscular disability, whether it
is cerebral palsy, muscular dystrophy, spinal bifida--we go
down a long list of things--residual from a traumatic brain
injury, in that person's situation at the end of 15 sessions we
are not talking about going home and taking care of it and
everything is back to business, because what we are really
worried about is preventing neuromuscular atrophy, and atrophy
leads to function or loss of function, and that can be an
independent living which then translates to higher costs and
more personal assistance. It could also cause more problems in
the workplace because the person isn't able to use their hands
as well, their arms, their feet, depending on which limb is
involved.
So what happens often with the employer-based insurance is
the person with a long-term disability either is not able to
access the benefit at all because of the definition of medical
necessity or, even if they can access it, it's a capped
benefit. There again, we would suggest that the Medicaid or
Medicare needs to be available as a wraparound, and I know that
Congress is getting ready to address the limitations in
Medicare that were put in in BBA to the $1,500-a-year cap on
therapies.
Mr. Brown. So the wraparound works the wrong way?
Mr. Bergman. Well, the wraparound, at least as I think this
bill would propose it, would work the right way, which is the
commercial insurance would be primary and then the Medicaid
and/or Medicare would be the secondary or in some cases the
alternative payer.
Again, we talked about assistive technology and durable
medical equipment. Jeff pointed out he has very good coverage
there. An awful lot of commercial employer-based insurance
either has a capped coverage, no coverage, one lifetime
coverage--for example, power wheelchairs such as his, you get
one forever. Well, if that is basically his mode of
transportation, we know that is not going to last him forever.
It breaks down just like our cars do. So every often you might
get the one-time-only wheelchair for $12,000 or $15,000, but
repairs are not covered and then the replacement chair 6, 7
years out isn't going to be covered, and then where does the
next $12,000, $15,000, $18,000 come from?
Mr. Brown. Let me shift to Mr. Gray. You are representing
the Health Insurance Association of America. That is the
private for-profit insurance companies; is that correct?
Mr. Gray. That's correct.
Mr. Brown. In your testimony you mentioned the Health
Insurance Portability and Accountability Act of 3 years ago, of
1996, and state that it helps increase access to coverage in
some specific situations, but it is not a complete solution for
all individuals with disabilities. If reversal of the status
quo of Medicare as secondary payer were allowed, would HIAA
lower the premiums charged to employers to reflect the fact
that private insurance is paying only for things that Medicare
doesn't cover?
Mr. Gray. If I understand the question correctly, you are
asking me if the HIAA position is that Medicare should be the
secondary?
Mr. Brown. If you were the secondary, if HIAA were second
or if the health insurance were secondary, would you then lower
your premiums?
Mr. Gray. I would have to take that question back for more
technical consideration by some of the actuaries. I am not
sure. I don't want--I am not sure that I can answer that
question correctly on behalf of HIAA.
Mr. Brown. If it is true that disabled individuals today
who have access to Medicare coverage aren't able to purchase
Medigap insurance to help assist them with their extra costs,
which I understand is true in almost every case, don't you
think that this would improve the situation for the disabled,
and would HIAA support such legislation?
Mr. Gray. The HIAA perspective on this is that it should
be--in some situations there should be no need for Medigap
insurance any more, because we will have a full spectrum of
coverage from what Medicare provides coverage for and then what
the commercial insurer provides coverage for.
Mr. Brown. But in those cases where it is not, would HIAA
support availability of Medigap for Medicare beneficiaries?
Mr. Gray. Yes.
Mr. Brown. Thank you.
Mr. Bilirakis. Mr. Lazio.
Mr. Lazio. Thank you very much, Mr. Chairman. Let me thank
the panel for all of your efforts, and if I can, I want to
start off with some questions of the Deeley partnership at the
end. I just want to get back to two of the experiences that you
have had, which I think in a very concrete, but simple way,
make the case for H.R. 1180. Mr. Deeley, you were talking about
Tom and the fact that he has been such an outstanding employee
that he was offered a bonus and he couldn't take it?
Mr. Harold Deeley. That is correct. We think we finessed
it.
Mr. Lazio. I am happy to hear that.
Mr. Harold Deeley. We changed it from the $200 award, which
was a standard thing for his achievement, to a $200 gift
certificate, and that may be declarable as income, but we think
it got around the type of income that raised his salary or his
income over $500 per month.
Mr. Lazio. And Tom, you would like to work full time and it
appears as though you have the opportunity to work full time
and this is a company that would like to see you work full
time.
Mr. Harold Deeley. Yes, that is exactly correct. Tom was
working full time at the start. He was evaluated and his
performance was good enough to give him a substantial hourly
raise. Once that came into being, we began to tread on thin
ice. Then a second raise was in prospect and we got around that
by reducing the number of hours, and it went from 5 days a week
down to what are now 2 days a week. Tom would love to be a 5-
day-a-week worker.
Mr. Lazio. He says yes.
Mr. Harold Deeley. Show that the plaintiff nods.
His boss would love to have him. I have been told by his
current boss and the previous one that he is by far the best
worker they have down there at the Defense Logistic Agency, and
this is janitorial work, but he does a good job and he is
eager. In fact, he carries it home and he pricks my conscience
that my desk is such a mess. He is a neatnik.
Yes, he would very definitely like to go back to full time.
He enjoys a very good relationship with his co-workers as well
as his boss, and there is at least one or two of them who are
reduced, but not to the degree Tom has been, down to the 2-day-
a-week thing.
Mr. Lazio. So this certainly is a perverse disincentive.
If I can just turn, if I can, to Mr. Gray. You had
suggested earlier that there are attitudinal consequences to
providing some opportunity for folks to feel secure about their
healthcare coverage and the opportunity to go back to work.
Could you expand upon attitudinal institutional barriers to
employment?
Mr. Gray. Thank you, yes.
Mr. Lazio. Because I think that flows well from the
testimony we just heard.
Mr. Gray. I think that there are two areas that I would
like to address. First is the existence of a continued
attitudinal barrier that people with disabilities are less
abled, rather than differently abled, and an extension of that
kind of thinking is that people with disabilities are always
going to require the maximum degree of support, and help, and
cost associated with what we think of in a worse-case scenario.
Now that is absolutely not true. There is more diversity in
the ability of people with disabilities than there would be in
the rest of the general population.
The second area I would like to address is what I consider
an institutional barrier that we don't often talk about, which
is amazing because it has to do with communication, and it is
that we have a lack of an effective dissemination of
information regarding existing programs and services that will
enable people with disabilities to lead a higher quality of
life and be more productive and independent.
That is why we feel that the community outreach portion of
this legislation is so critically important. People need to
know how to weave their way through the complex maze of laws
and details, and quite honestly, most people are not prepared
or have the desire to deal with things at that level of detail.
We need to make sure that the most effective ways of
disseminating information are in fact funded, and that may be
through private means as well as public means.
Mr. Lazio. But let me ask Mr. Auerbach this, if I can.
There are some critics to the approach that we have taken who
suggest that maybe a 1-year extension to the 4 that we
currently have for Medicare coverage or 2 years would be
enough. Why isn't 6 years enough? Why do we need, if you will
agree that we need the 10-year timeframe, why is that important
that is in this bill?
Mr. Auerbach. Mr. Chairman, Representative Lazio, I think
this is a major philosophical shift for the Federal Government
saying to people with disabilities that we are going to support
your independence and the continuity, and I don't know if there
is a magic number. Candidly, I don't know if there is a magic
number, but the longer that people know that they can have that
support and go to work, your SSDI beneficiaries are much more
likely, we think, to be able to make that transition to
employment. Most of them already have work histories of some
sort or another, and they are the most likely, we think, to be
able to go back to work. They have a great chance of being
successful. So I think it is the messaging, candidly.
Mr. Lazio. So does that help us get the information out,
get the word out? Mr. Gray was talking about it, and so many
things, marketing it so that people understand clearly what
their risk is, or how risk is alleviated, and whether this is a
realistic choice for people to dream about it, think about.
Mr. Auerbach. We spend a lot of time--right now we have--we
started our program in February of this year and we have, at
last report, 22 people on the program. It is not, you know, a
situation where people bust down the doors. But this is just
pent-up demand at this point. We haven't gone out and started
marketing, but yet my staff in field offices throughout the
State are saying, when are you going to send us more staff to
be able to handle all the questions? Because there is a complex
set right now, and you heard it from other people testifying,
of work incentives, and to be able to explain to somebody how
they go through and what they are allowed to do, and what they
are not allowed to do, and how potentially these new
opportunities are going to fit in with the existing ones is
going to take a lot of time. The marketing is very important,
and the messaging is very important.
We have told people with disabilities that they had to
prove to us that they are disabled in order to have cash
benefits. For us now to say to them we have changed, we need to
have as many real things to show them that there, in fact, is
going to be a change for them.
Mr. Lazio. So it is attitudinal in that sense as well that
people feel as though this is a realistic opportunity, that
this may even be an expectation for folks to actually pursue or
explore opportunities to the extent that they can.
Mr. Auerbach. This is absolutely what we would like to be
able to do. We would like to be able to, as we sign someone up
for benefits, say as you are signing up for benefits, we want
to help you get your life stabilized so that we can talk with
you about going to work.
So, in fact, we would like to be able to have that message
from the time that people actually come in our doors and have
an expectation that we are going to help them be as independent
as possible, and for most people, as you can tell from the
statistics, most people want that opportunity to work.
Mr. Lazio. It is overwhelming. I know Mr. Bergman is
shaking his head. One of the problems that some folks face is
maybe an episodic disability. Some people go through stages in
which they have problems functioning to full capacity, because
they may be in remission for a while; they may be able to go
back, for example.
How does this bill--does it address that problem?
Mr. Auerbach. That is a very good question, Congressman
Lazio. I think it does, but can I put a parenthetical on the
last one, because it is very important. I think there is such
concern about this bill from some parties opening up the
woodwork effect and the floodgates, and, gosh, we should be so
lucky.
I think there is so much history around the return-to-work
mythology, and bad starts, and false starts, and failures, if
you will, that I think the marketing piece that Roger talked
about needs to really happen. And even with that, to build
confidence and trust is going to take a long time within the
collective disability community before we get any of the kind
of numbers some of us hope we are going to see on this
initiative. It is not going to happen quickly.
On the episodic issue, I think what the bill does is make
it more comfortable for the person to take some risk to go to
work by knowing that disability determination is not going to
be another 2-year process, and if you will, there is re-entry
back to, if you will, the safety net, some sense of security.
You get through that next period of your situation, and then
you go back to work, and obviously, that is going to take some
flexibility with employers and people may end up changing jobs,
but what it does is begin to give confidence to the person with
the intermittent or episodic disability to be able to say,
``Okay, I'm in remission now; I am feeling good. Life is good
right now. Let's go.'' And whether that is something like MS
and a physical disability or somebody with a psychiatric
disability or a traumatic brain injury, that individual has
some sense of security they can go forward, their health
insurance will have some continuity, and they go and feel good,
and they make a contribution, and they pay some taxes, and get
a real paycheck, and 6-8 months later they are back and they
have to stop work for a while.
But, yes, this bill at least begins to put some
underpinnings in there that says, just because you go to work,
you haven't been cured, if you will, to go back to the
healthcare model. You still are a person with a disability, and
that is what we are trying to do here, is change the paradigm.
As I said in my testimony, the old paradigm was disability was
a synonym for incapable of work by definition of SGA, because
if you reach SGA, you are not disabled. And there is a case
going to the Supreme Court that is actually going to test that
out for us very soon. This bill begins to say, no, disability
doesn't have anything to do with employability and the Federal
Government wants to create some real incentives.
Mr. Lazio. Well, that is a great way to end up. I want to
thank you, Mr. Chairman.
Mr. Bilirakis. Thank you, Rick.
Gentlemen and Mary, Mr. Lazio asked the question about some
problem--maybe some people feel that we should really extend
for another 6 years, and maybe another 2 years or something of
that nature is adequate. I would suggest to you--and he already
knows this--that that could be a very critical point with the
progress of this bill, particularly with Ways and Means, and
whatnot.
So, I am not going to take up any more time here. There
will be a number of questions that will be afforded you in
writing by the staff and that is one of them, and I would
suggest, please, if you want to really help us here, give more
thought to it.
Mr. Auerbach responded to it, but, you know, I think that
you can do better, quite frankly. We would like to hear from
all of you in that regard, how critical you think maybe the 6-
year extension is versus anything less than that.
So are you all willing to respond to any written questions?
Okay, that being the case, the Chair yields to Mr. Brown
for his statement.
Mr. Brown. Mr. Chairman, I want to just thank you and thank
Mr. Lazio and Mr. Waxman for bringing this bill here today, and
thank the majority staff for working with us in a bipartisan
fashion to invite appropriate witnesses. I think the hearing
was excellent; the witnesses were terrific.
There were a couple of issues that minority members are
concerned about that are procedural issues. One is that to find
out an hour before the hearing that a new witness has been
added is a bit problematic, and we were not told of the
decision to combine the panels until we showed up today. I
don't certainly blame Mr. Bilirakis personally, because he has
always worked in good faith, but these issues are important to
the minority, just so we can continue to fashion legislation
bipartisanly, as we have today, that we can work as full
partners. I would hope that your staff, the majority staff,
would work a little more closely, and a little more directly,
with the minority staff so we can work bipartisan and continue
that effort. Thank you.
Mr. Bilirakis. Well, I would like to think that they are
already doing that, but apparently they are not. I will tell
you that we found out an hour before the hearing that the mayor
was going to be testifying. That's what they tell me. I don't
know any of the background as to why he decided to testify, but
I think that we all agree that he was a very valuable witness.
As far as combining, that is something that I always
prefer, maybe less than--rather than 4 or 5 panels I like to
see----
Mr. Brown. Mr. Chairman, I can't quite see that far, way
over on the left.
Mr. Bilirakis. But it worked. It worked.
Mr. Brown. It did work. We don't object to the combining,
but just that we are notified of combining a little bit earlier
than when we show up because it does affect--sometimes, not
today, because this was not a contentious hearing and all, not
a partisan hearing or any of that, but sometimes it affects the
way that we might prepare questions.
Mr. Bilirakis. Well, I agree, and I certainly ask the staff
for better cooperation with the minority staff. But I do think
that it is important that we don't get hung up with the size of
the table or the shape of the table here; we have more
important things to be concerned with.
Thank you very much. You were of tremendous assistance to
what we are trying to accomplish here. Stay with us, and again,
please feed any additional information you can think of that
might be helpful to what we are trying to accomplish. Thank
you. God bless you.
The hearing is adjourned.
[Whereupon, at 5:52 p.m. the subcommittee was adjourned.]