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Congressional Testimony
July 13, 2000, Thursday
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TESTIMONY July 13, 2000 TONY YOUNG CO-CHAIR CCD TASK FORCE ON SOCIAL SECURITY
HOUSE WAYS AND MEANS SOCIAL SECURITY IMPROVED PROGRAMS FOR
DISABLED PERSONS
BODY:
July 13, 2000 Testimony of
the Consortium of Citizens with Disabilities (CCD) Presented by Tony Young,
Co-Chair, CCD Task Force on Social Security Before the House Ways and Means
Social Security Subcommittee Chairman Shaw, Mr. Matsui and members of the
subcommittee, thank you for the opportunity to testify today on the Future of
SSA Disability Programs. I am Tony Young, Director of Government Activities for
NISH and Vice Chair of the Consortium for Citizens with Disabilities. CCD is a
coalition of nearly 1 00 national organizations advocating on behalf of people
with all types of physical and mental disabilities. I am testifying today in my
role as a Co-Chair of the CCD Task Force on Social Security. INTRODUCTION We
appreciate having this opportunity to examine the needs of persons with
disabilities who are on, or who will be participants in, the SSA disability
programs - Social Security Disability Insurance SSDI and Supplemental Security
Income SSI . SSDI began in 1956 as an early retirement program for injured
workers who could not struggle through to the regular retirement age of 65. SSI,
created in 1972, was a program intended to supply a minimum level of economic
support to the elderly, blind or persons with disabilities whose work history
was insufficient to qualify them for SSDI. Since their inception, these
disability programs have evolved unevenly whereby individual problems in the
programs were identified and partially solved, not always with a comprehensive
view or purpose. Changes have come only when program parameters have been found
to be grossly out of line with reality. For instance, the substantial gainful
activity SGA level was finally raised in 1999 to $700 per month after having
been set at $500 per month since 1990. Some program criteria, such as the SSI
earned income disregard, has not been changed since the program began in the
early 1970s. Federal disability programs, as originally envisioned, were based
on the assumption that people who became disabled would remain disabled
throughout the rest their lives. This static view of disability meant that
little thought was given to what might happen if people returned to work after
becoming eligible for benefits. However, disability is not static. Disability is
a dynamic condition. Medical advances, new technologies, improvements in
rehabilitation services, and the expectations of people with disabilities have
all conspired to change the meaning of disability, the very definition of
disability. The consequences of this new disability dynamic have rippled through
the federal disability system, revealing a system that has not adapted to meet
the challenges ahead. DEMOGRAPHICS, SOCIETY AND THE ROLE OF PEOPLE WITH
DISABILITIES The changing demographics of individuals who might benefit from the
SSA disability programs - - the nature of their disabilities, the age of onset,
the length of time in the programs, and related factors - has had and will have
a most profound impact on SSDI and SSI. Some brief statistics provide a snapshot
of Americans with disabilities and the circumstances in which they live. In
1996, the Government Accounting Office GAO i reported that, during the period
1985 to 1994, the number of people with disabilities on SSI and SSDI increased
from 4.2 million to 7.2 million. By 1994, 57% of people on SSI aged 18 to 64
were those with mental impairments. For those on SSIDI the percentage was 31 %
of the Di population. The DI and SSI populations became somewhat younger during
that time period: DI beneficiaries in "middle age' 30 to 49 increased from 30%
in 1986 to 40% in 1994; for SSI beneficiaries the increase was from 36% in 1986
to 46% in 1994. The majority of Americans with disabilities are of working age
57.6% . Native Americans have the highest disability rate of all racial groups 1
7.6% ; Asians and Pacific Islanders have the lowest rate 7.2% . For whites and
African Americans, the rates are 15.3 and 15.9 percent respectively but
Hispanics report a disability rate of only 10.5%. Disability rates are highest
in rural areas although most people with disabilities live in metropolitan areas
(74.8%) . Disability rates are 3 times higher among people who did not finish
high school than among those with college degrees. People with disabilities,
according to a 1992 National Health Interview Survey, include 4 million
Americans with heart disease, 3.7 million with arthritis, 1.5 million with
mental disorders, 1.4 million with mental retardation or learning disabilities.
There are over half a million Americans with spinal cord injuries or dysfunction
and 654,000 with hearing impairments. Another 1.4 million individuals have
visual impairments. Only 3 in 1 0 working-age adults with disabilities are
employed full or part time, compared with 8 in 1 0 non-disabled adults. This low
rate of employment has led to an income gap not reduced since 1986. One in 3
disabled adults, compared to 1 in 8 non- disabled adults, live in households
with incomes below $15 '000.4 Any examination of federal disability programs
must be viewed in light of the evolving societal factors surrounding people with
disabilities - such as the Individuals with Disabilities Education
Act IDEA and Americans with Disabilities Act ADA -- and the shifting
expectations of the role that individuals with even the most severe disabilities
can play in the lives of our communities and economy. Among the most exciting
advances have been our expectations for individuals with the most significant
support needs. For example, over the past twenty years we have moved from
building institutions to creating individualized living arrangements in the
community for individuals who have been labeled with a significant cognitive
disability. Well over 200,000 individuals who once were never expected to spend
their days beyond the protective walls of congregate settings such as sheltered
workshops or adult day activity centers are now working in the community in
real, competitively paid jobs through supported employment. They now do what the
rest of us do: go to a wide array of jobs, collect their paychecks, and go home,
many with supports, some with none. The nation will celebrate the tenth
anniversary of the Americans with Disabilities Act later this month. That Act
recognized what the disability community has known for years, that "disability
is a natural part of the human experience." The protections afforded by the ADA
have opened the windows on the disability experience and revealed a myriad of
individual skills and capacities that very closely parallel those of people
without disabilities. This exposure, along with an explosive growth of
technology, research and training, best practice services and supports,
individual awareness and self-determination have changed forever the way that we
approach disability in this country from public policy to practice. NEW
TECHNOLOGIES, MEDICAL ADVANCES AND IMPROVEMENTS IN SUPPORTS AND SERVICES Much of
the changing attitudes toward people with disabilities and their capabilities
have been driven by the transformation of the workplace and the environment
through technology, breakthroughs in medical science, and innovations in
supports and services used to enhance the independence of individuals with
disabilities. Four years ago, the GAO noted that, despite poor return-to-work
outcomes under SSI and SSDI, "many technological and medical advances have
created more opportunities for some individuals with disabilities to engage in
work. Electronic communications and assistive technologies--such as scanners,
synthetic voice systems, standing wheelchairs and modified autos and vans-have
given greater independence to some people with disabilities, allowing them to
tap their work potential. Advances in the management of disability--like
medication to control mental illness or computer-aided prosthetic devices--have
helped reduce the functional limitations associated with some disabilities.
These advances may have opened new opportunities, particularly for some people
with physical impairments, in the growing service sector of the economy.
Finally, the development and replication of new supports and services has made
it possible for many more people with disabilities to receive the rehabilitation
and on-going supports they need to work. Psychosocial rehabilitation,
occupational therapy, and job coaching are just some of the services now
available to people with severe mental and physical disabilities. These services
help people assume and maintain work and also include services to develop or
enhance self-care skills so that the individual can function in society. Many
people with significant disabilities are surviving injuries at birth, disabling
diseases, or traumatic accidents. Some of these survivors are living longer,
more healthy lives. Some, however, are not. Some of these survivors have access
to the latest technological aides that make them productive and independent.
Many other survivors do not have access to this technology. Some individuals
have access to the latest prescription medications, surgical techniques,
intervention therapies, and other modern disability management procedures. Most
people with severe disabilities do not. The future holds potential for
remarkable advances in gene therapy and similar genetic treatments that some
will have access to, but many still will not. This opportunity gap will widen
the discrepancy in work opportunities for those who might qualify for SSA
disability programs. Different types of supports and expectations are needed and
appropriate for people of different ages and with different types of
disabilities. Disability is as individual as the person who experiences it. Each
disability has its own personality, with strengths, weaknesses, and even quirks.
Each must be treated appropriate to its own personality in order for the
individual with the disability to be successful at whatever they might attempt
to do. Clearly, age and disability are interrelated when it comes to work
aspirations. A young adult who has never worked will have greatly different
aspirations than an individual in mid-work life with several years of work
experience, and that individual will have different aspirations than an older
individual who has many decades of work experience. Their needs for income and
supports will vary greatly as well. To treat everyone equally is to mistreat the
majority of those on the program. Individualized assessments of needs and
services are essential to successfully assisting people with disabilities to
work. There must be incentives for people to encourage them to risk leaving the
benefit program, and there must be an easy transition from benefit support to
personal support. It is essential that all persons be allowed to seamlessly
reenter the benefit program should they fail in the effort to work. It is
possible to identify common concerns for all as well as particular concerns of
subgroups. Common concerns include: 1) an easy transition from benefits to
personal support rather than a sudden cutoff of benefits; 2) easy reentry to
benefits if work is not successful; 3) no total cutoff of benefits until one
reaches a living wage with comparable health coverage; and 4) a flexible benefit
for individuals who can only work episodically, such as those with mental
illness. WEAKNESSES OF FEDERAL DISABILITY POLICY Definition of Disability - In a
1996 report, the GAO identified at least "fourteen different definitions of
disability used by federal programs alone, and many of these definitions
provided considerable agency and state discretion in eligibility determination
... For example, programs administered through the Department of Education, such
as VR, defined eligibility in terms of physical or mental impairments, whereas
the programs administered through SSA defined disability in terms of the
inability to work. ,6 One of the most serious problems with current disability
program design and policy derives from the fact that Social Security's
definition of disability continues to focus on near-complete inability to work.
Furthermore, the measure for ability to work is set at a level of income that
does not provide even a base of support necessary for most people to live. Many
of the policies that penalized people with disabilities for working have been
addressed through last year's Ticket to Work and Work Incentives Improvement
Act. Yet, the retention of the unrealistically low substantial gainful activity
SGA level continues to punish rather than reward people who attempt to leave
entitlement programs through work. We recognize that considerable debate has
already occurred on this subject. However, we reiterate once again our firm
belief that federal disability programs must respond to modern reality rather
than remain mired in the mind- set of the last century. In the past, CCD has
recommended changes in the definition of disability that would: retain the
criterion of mental or physical impairment or combination of both verifiable by
accepted clinical methods; replace the concept of SGA with an assessment of
functional limitations in all areas of life activities; and consider vocational,
medical and other factors in an overall assessment of an individual's
functioning in areas of major life activity. Furthermore, attention must be paid
to how temporary, recurring/intermittent, or partial disability is addressed by
federal disability programs. Whatever future steps Congress may take in this
regard, CCD urges you to proceed with caution. Any proposals to revise the
definition of disability, whether through statute or regulation, should be
subjected to careful analysis of the effects on people with disabilities and a
realistic assessment of the true meaning of disability, including for those who
are able to work with necessary, on-going supports. Multiplicity of Federal
Disability Programs - In 1996, the GAO found that federal assistance to millions
of people with disabilities was provided through 130 programs in 19 federal
agencies.7 Very often, service delivery is performed through numerous public and
private agencies at the state and local level. In the fiscal year studied 11 994
, GAO revealed that the federal government spent over $60 billion on 69 programs
targeted exclusively to people with disabilities. In addition, people with
disabilities benefited from between $81 billion and $184 billion in spending
through 61 partially targeted programs. This list of programs did NOT include
AFDC, the forerunner of Temporary Assistance to Needy Families TANF -- as GAO
eliminated programs not specifically intended to address disability. How well
these programs coordinate with one another and how well they serve the people
they were created to help are questions worth considering. Interaction with
Other Governmental Programs - As noted above, SSA disability programs do not
exist in a vacuum. There are over 100 federal programs that affect people with
disabilities. It is imperative to examine how the SSA disability programs
interact with other poverty programs, e.g., job training, Food Stamps, housing
subsidies, transportation supports, long-term supports, and similar programs. A
major issue for individuals with severe disabilities concerns the need to stitch
together a patchwork quilt of income, and in-kind supports in order to live. Too
often, taking a job unravels this quilt in ways that undermine the work effort
and trap them in poverty and government cash assistance. For example, Medicaid
policy allows some states to have stricter Medicaid income levels, asset levels,
income disregards and even medical disability definitions than SSI. This means
that incentives for SSI recipients to return to work are seriously undermined
because the Medicaid needed to support work attempts is not always available if
Medicaid rules are not the same as those of SSI. In addition, continuing
disability reviews CDRs that find people "no longer disabled" not only deprive
them of cash benefits but they cost such persons continued Medicaid and Medicare
which, under current law, are supposed to be available to those who leave the
SSI and SSDI rolls to work. Furthermore, the Medicaid formula for determining
medical expenses used for individualized computations of earnings thresholds in
determining continued eligibility under Section 1619(b) now only recognizes
publicly-provided attendant care costs and fee-for-service per capita Medicaid
expenditures on behalf of that particular patient. Accounting for the true costs
of supports becomes an issue when states' Medicaid reimbursements are only
recorded as capitations to managed care contractors-and do not, therefore, fully
recognize the high costs of services actually rendered to particular disabled
individuals. HUD housing programs do not have earnings disregards. Local public
housing authorities do have authority to institute earnings disregards for
public housing units --- but NOT for Section 8, vouchers, Section 212, Section
81 1 or the special subsidies for people with disabilities established by
Congress in the late 1990s. And even this limited authority has so far been
largely directed at helping TANF mothers in public units return to work. A
growing body of research indicates that a large proportion of parents receiving
TANF or who have left TANF have disabilities or health conditions that may
affect their ability to succeed in the workforce if they are not provided with
the appropriate supports and services to help them succeed. " In addition, many
families who are eligible for Medicaid or other publicly funded health insurance
coverage are not enrolled in those programs, due to the de-linking which has
occurred. These are but a few of the complexities of the social security
disability programs' interactions with other government programs. Integrating
SSI with work programs for older disabled children -- Children in the IDEA era
have, generally speaking, been entitled to a free and appropriate public
education and, theoretically, have had access to an array of services while in
school. However, they lose these supports upon attaining a certain age and often
fail to advance into the world of adult employment as a result.
ChildrenandtheirfamiliesneedtheservicesaccordedbyIDEAinorderforth emto perform
at satisfactory levels to achieve their educational goals. These same or similar
services may be required for them to then meet their vocational goals. In
addition, there is the need to eliminate the penalties built into the current
system for young people who need ongoing supports even while working. Work
Incentives - The Ticket to Work and Work Incentives Improvement Act, in reality
a major achievement in addressing certain deficiencies in federal disability
programs, is placed here to draw attention to remaining hurdles confronting
people on SSI and SSDI. Furthermore, because PL 106-170 has yet to be
implemented, we cannot predict how successful it will be in eradicating barriers
it was created to remove. A major problem with the SSDI program has been its
eligibility determination system that forces applicants to assert that they have
no residual work capacity in order to qualify for benefits. Then, if someone
attempted to work, the system abruptly withdrew all supports that individual
needed to survive. The Ticket to Work and Work Incentives Improvement Act took
significant steps toward eliminating this bias through its provisions assuring
extended Medicare coverage for workers with disabilities and the easier return
to benefits should a work attempt fail. However, SSDI retains the assumption
that work beyond a very modest, less- than-minimum wage level of earnings means
that a person is no longer "disabled". The concept of appropriate supports means
the elimination of all financial and psychological disincentives to work. In the
past, applicants for SSDI had to undergo months of review in which they had to
assert no capacity for work. They waited months for benefits, often after months
of appeals, and waited again to qualify for Medicare coverage. Only recently,
did they have the presumptive eligibility for entrance into the vocational
rehabilitation system and, even if they did receive VIR services, they were
warned not to earn too much, lest they lose all of their benefits. If
implemented properly, the Ticket to Work and Work Incentives Improvement Act
could address many of these disincentives. The extension of Medicare will assure
continued health care coverage for SSDI recipients. Depending on how and whether
they are adopted by states, the Medicaid buy-in provisions have the potential to
provide more complete health care supports to beneficiaries going to work.
Again, depending on how SSA implements the Ticket to Work program, beneficiaries
should have greater choice in provider and type of vocational rehabilitation
services. And, the benefits outreach, counseling and assistance, if done
properly, can offer beneficiaries clearer road maps to navigate the consequences
of going to work. For those with a recently acquired disability, early
intervention of the type envisioned through the counseling and assistance
planners may mean the difference between returning to work and languishing on
the disability rolls for years. Finally, the expedited reentry provisions offer
some measure of reassurance that benefits will not be difficult to obtain should
a work attempt fail. However, while the system manages to make initial
disability determinations, it is totally inadequate at tracking income and
earnings as people take advantage of the aforementioned services. This
inadequacy will become more apparent as people take advantage of the recently
enacted work incentives legislation. For example, while overpayments to
beneficiaries who work have always been problematic, they promise to become
catastrophic if left unchecked. Beneficiaries will more deeply mistrust the
program, providers won't get paid under the Ticket if the benefits continue
unnecessarily, the fiscal strain on the program will continue, and other parts
of the disability program will suffer as SSA struggles to correct the problem
without adequate resources. Congress must address the need for systems
improvement and modernization. CHALLENGE OF THE BABY BOOM It is no secret that
during the next twenty years, there will be a large increase in the number of
people who reach both retirement and early retirement ages. Strategies must be
explored to help individuals reaching early retirement age, who lose their
ability to perform their existing jobs, to remain in the workforce for as long
as possible. Currently, the SSA disability programs only respond once someone's
disability has reached the acute stage in which an individual is driven out of
the workforce entirely. The sheer number of baby boomers will have an enormous
impact on SSA's operations. According to SSA's Office of the Actuary, by 201 0,
SSDI applications will increase by 54% and SSI disability applications by more
than 1 0%.9 Over the same period, the increase in the normal retirement age also
will affect the number of disability applications. In addition, SSA has been
faced with more complex and changing work challenges. The disability
determination process is complicated and lengthy. The SSA customer population
has changing expectations about technology. More claimants are non-English
speaking or limited- English speaking, leading to a need for more bilingual
staff. Recent legislation requires SSA to provide increased rehabilitation and
employment services for people with disabilities, to maintain a schedule of
continuing disability reviews and other eligibility reviews, and to implement
new approaches to prevent fraud and abuse. The problem is aggravated by the fact
that SSA's workforce also is aging and will begin to lose significant numbers of
experienced staff, including senior management and leadership personnel. More
than one-half of SSA's 63,000 employees will be eligible to retire by 2009 or
leave government service after twenty years with pension rights.10 Between 2007
and 2009, about 3,000 employees are expected to retire per year. The service
delivery problems have been exacerbated by SSA's prolonged period of downsizing
- since 1982, SSA's workforce has declined by 27%. At Subcommittee hearings
earlier this year, the Social Security Advisory Board, the Commissioner of
Social Security, and the General Accounting Office raised the issue of how SSA
should plan to retain experienced staff and train new managers to meet these
needs. The CCD Social Security Task Force has voiced concern for some time over
the continued long-term downsizing of the SSA workforce and believes that
failure to conduct appropriate and timely CDRs and other eligibility reviews
could lead to decreased trust in the integrity of the Social Security and SSI
programs. In addition, the new efforts to assist people with disabilities to go
to work, through the Ticket to Work and Work Incentives Improvement Act of 1999,
will require new and expanded approaches for SSA interaction with beneficiaries.
Adequate staffing levels are critical for these and other efforts to be
successful, especially given the coming disability and retirement years of baby
boomers. The independent, bipartisan Social Security Advisory Board has
unanimously urged that SSA's "administrative budget, like its program budget, be
explicitly excluded from the statutory cap that imposes an arbitrary limit on
the amount of discretionary government spending." 11 We believe that the entire
Limitation on Administrative Expenses LAE should be removed from under the
domestic discretionary spending caps so that SSA's administrative functions can
continue to operate smoothly for beneficiaries. For background, see CCD
statement for the record, March 16, 2000 ISSUES FOR THE FUTURE No single hearing
can capture the entire range of questions that need to be asked about the future
of federal disability programs. The CCD Social Security Task Force recognizes
that this is just the beginning of an exploration of ways to modernize SSDI and
SSI. We also recognize that some of these questions fall under other committees
jurisdictions. That, however, may indicate a need for greater coordination among
Congressional bodies responsible for programs affecting people with
disabilities. Based on our testimony, we would like to offer several issues that
the committee should examine as it continues its investigations. -Does the
definition of disability under social security adequately capture the spectrum
and continuum of disability today? Does it reflect the interaction of
vocational, environmental, medical and other factors that can affect the ability
of someone on SSI or SSDI to attain a level of independence? -Do current SSA
program policies foster or hinder acquisition of technology that will lead to
greater independence? Are these technologies covered under impairment related
work expenses? Would someone acquiring necessary supports to go to work
encounter problems with asset and resource limits imposed under federal
disability programs. Should tax credits or other incentives be provided for
people to obtain these supports to go to work? -How competent is SSA at
communicating with its SSI and SSDI beneficiaries with visual impairments?
Frequent failure of SSA to produce notices and documents in accessible formats
lead to penalties imposed on such beneficiaries and increased administrative
expenses in dealing with the consequences. -Should CDRs be reevaluated for those
covered under Medicaid Section 1619(b) or individuals still relying on Medicare
to prevent denial of the very health care coverage offered to encourage people
to work? -Can the stricter income, asset levels allowed under Medicaid's 209 b
provisions undermine promotion of Medicaid buy-ins and other initiatives
designed to assure continued health care coverage for individuals on SSI and
SSDI going to work? Testimony of the Honorable Stanford Ross, Chair, Social
Security Advisory Board, before the House Subcommittee on Social Security,
Committee on Ways and Means, February 10, 2000 Are changes needed in the current
Medicaid 1619 b formula for individualized determinations to allow for other
medical costs of working disabled persons met by other programs? e.g. Medicare,
state pharmacy assistance, AIDS Drug Assistance Programs, WIC, public maternal
and child health programs, cash medical purchases and private health insurance.
Why are earnings disregards recognized for SSI, SSDI, Medicaid and Medicare
purposes not so honored by housing subsidy programs as well? Income and assets
excluded by the PASS program are excluded under the housing statutes. The HUD
programs should similarly recognize other disability-related disregards. How
well do veterans' programs interact with and serve veterans with disabilities
who rely on SSDI and/or SSI? Can steps be taken to replicate the earnings
disregards and work incentives of the SSI and SSDI programs in Medicaid and the
AIDS Drug Assistance Programs? This is important for individuals dependent for
drugs on non-SSI-based Medicaid (e.g., TANF-related cases) and the AIDS Drug
Assistance Programs rely for essential pharmacy coverage on programs which
currently have NO meaningful earnings disregards or other work incentives.
Should state standards for exemption from welfare time limits and work/training
requirements make allowances for families in which either a primary or secondary
parent cares for a child with a disability? Studies suggest that at least 20% of
TANF cases have disabled primary caretakers, children or second parents (since
many states can and do now include two parent families). Again, these are but a
few questions that arise when considering the array of federal programs
affecting Social Security beneficiaries with disabilities. We appreciate the
subcommittee's attention to these issues and look forward to continuing to work
with the members in examining the future of the disability programs.
LOAD-DATE: July 25, 2000, Tuesday
