Congress Set To Tackle SSI-SSDI Reforms / Action Needed (fwd)

Anitra Again (
Sat, 13 Dec 1997 00:19:40 -0800 (PST)

Please forgive the weird-ass characters (=96, =20) -- they were in the
original posta nd my current emailer doesn't do search-and-replace.
---------- Forwarded message ----------
December 9, 1997

Congress Set To Tackle SSI-SSDI Reforms

Congress has adjourned for 1997, without acting on legislation to
fundamentally reform the adult Social Security Disability Insurance
(SSDI) and Supplemental Security Income (SSI) programs in order to
promote work and independence.  Nevertheless, eliminating the pervasive
work disincentives in the SSDI and SSI programs remains a high priority
for members of both parties and the Clinton Administration.  A number of
key members of Congress, including Representatives Jim Bunning (R-KY)
and Barbara Kennelly (D-CT) and Senators James Jeffords (R-VT) and
Edward M. Kennedy (D-MA), are planning to introduce legislation in early
1998 that would allow more beneficiaries to protect more of their cash
benefits as they move toward work and to extend eligibility for Medicare
and Medicaid for former beneficiaries in the workforce.

Since many of these legislative proposals are still in draft form, NAMI
is yet to endorse any specific proposal.  Nevertheless, NAMI is actively
working to educate members of Congress and their staffs on how the SSI
and SSDI work disincentives impact people with severe mental illnesses
and their families.


People with serious brain disorders and their families have long
criticized the SSDI and SSI programs as hostile to work.  At the outset,
one must prove that their brain disorder is of such severity that it
results in a disability that leaves them unable to work.  Once eligible
for cash assistance, many beneficiaries find that the cost of work is
too high, not only in terms of lost cash assistance, but also in terms
of cut-off of Medicare and Medicaid eligibility.

In the SSDI program, the Substantial Gainful Activity (SGA) earnings
"cliff" forces people to remain on the SSDI rolls once their outside
income rises above a certain level, i.e. the substantial drop off in
cash benefits actually rewards those who quit working.  Despite the fact
that work incentives exist in the SSI program that allow Medicaid
eligibility to be extended and limited cash benefits to be protected,
few beneficiaries utilize them and, studies have found, few local Social
Security offices promote them.  Finally, the complexity of these
programs often leave both beneficiaries and employers unable to figure
how to make the system work to promote employment among people whose
disabilities are severe and intermittent.

The most common feature of the various proposals now in Congress is the
health care issue.  Nearly every proposal would allow beneficiaries
leaving the cash assistance rolls to keep Medicare or Medicaid benefits
after entering the workforce.  A number of the proposals also seek to
open up the current monopoly system of publicly funded rehabilitation
services in order to promote greater consumer choice and more
flexibility to extend supportive services into the workplace.  Finally,
Congress is also likely to take up a proposal to replace the current
SSDI income "cliff" with sliding scale cash benefits that decrease
gradually as earned income climbs.

Not only are Congress and the Clinton Administration anxious to see the
SSDI and SSI programs changed to promote work and independence, they are
also motivated out of concern about the about the impact growth in the
rolls could have on the Social Security Trust Fund.  Currently, the SSDI
and SSI rolls are growing at a rate that is likely to create a financial
drain on the trust fund early in the next decade.  Individuals with
mental illnesses represent the fastest growing population in both
programs.  Only 1 in 500 SSDI beneficiaries overall voluntarily leave
the rolls.  Thus, Congress will likely be forced to make certain changes
in the next few years in order to cope with a looming financial and
demographic crisis.

This presents a serious danger to people with serious brain disorders
and their families.  If Congress fails to reform these programs in a way
that promotes work and independence for people who want to work, but are
trapped in these programs as a result of work disincentives, then more
drastic measures may be necessary in the coming years.  If the SSI and
SSDI rolls continue to grow, and the drain on the larger Social Security
Trust Fund increases, Congress could be forced to take drastic and
unfair measures.  These could include imposing time limited benefits for
certain disabilities deemed "non-permanent."  Under such a scheme,
serious brain disorders could be vulnerable given recent advances in
treatment.  Congress could also choose to simply rewrite the medical
listings in the Social Security law that form the basis for eligibility.

This process would involve simply declaring that certain conditions and
diagnoses are no longer deemed automatically eligible for cash
assistance.  Mental illnesses in the medical listings could be
vulnerable in such a process since they have experienced the largest
growth in recent years.  Recent experiences with congressionally
mandated changes in eligibility for children with mental disorders and
persons with a co-occurring substance abuse disorder offer telling
examples of the impact such incremental changes can have on individuals
and their families.

Perhaps the most important barrier to action on any legislative proposal
designed to head off a crisis and promote work among beneficiaries who
want into the workforce is the requirement that any change to the SSDI
and SSI programs be "revenue neutral," i.e. that any change in program
structure be either cost neutral to the trust fund, or offset by savings
in other Social Security programs.  Because of this requirement, the
agency conducting cost estimates of these proposals (the Congressional
Budget Office, CBO) become critical to the policymaking process.  Thus
far, estimates for fixing just the SSDI income "cliff" have been as high
as $2 billion over five years.

Action Requested

The need to address the long-term financial consequences of growth in
the SSI and SSDI rolls, coupled with demand for cost neutrality, make it
difficult to accurately predict an outcome.  It is therefore critically
important for consumers, family members and other concerned NAMI members
to meet with members of Congress directly during the current recess to
discuss the importance of reforming the SSI and SSDI programs to make
them easier for people with severe mental illnesses to move toward work
and independence.  The current congressional "district work period" runs
through January 24, 1998 and most members are accessible in their
state/district offices during this period.  NAMI staff are recommending
the following "talking points."  For more information, please contact
Andrew Sperling at

Talking Points SSI-SSDI Reforms

1.  Tell your personal experiences in coping with SSI and SSDI work
disincentives.  Personal stories that demonstrate the unfairness of the
current programs (including discrimination on the part of the public
vocational rehabilitation system) are more compelling than any policy
paper.  Stress how the episodic nature of severe mental illness makes it
necessary to have greater flexibility in the SSI and SSDI programs.

2.  Urge that Congress pass legislation that reforms the SSI and SSDI
programs to make work pay.  Such legislation must include:

 a) extended health coverage -- the threat of losing access to Medicare
(for SSDI beneficiaries) or Medicaid (for SSI beneficiaries) is the
single largest barrier to employment for many beneficiaries, without
access to coverage for medications, many people with severe mental
illnesses run an increased risk of hospitalization,

 b) a "2 for 1 cash offset" =96 this would allow SSDI recipients to extend
eligibility for cash benefits beyond the current "income cliff" that
severely penalizes certain DI beneficiaries once their earned income
exceeds $500 per month (addressing this income cliff will also give DI
beneficiaries the same incentives as in the SSI program),

c)  consumer choice -- institute a flexible program that will allow
people with severe mental illnesses to select and buy their own
employment related services; this approach would end the current
monopoly on employment forces for people with disabilities that is held
by public VR agencies,

d)  an "open file" system =96 this would allow beneficiaries who reach SGA
to end cash benefits but keep their file open.  Then if their medical
condition later prevents them from working, they can quickly resume cash
benefits until they can return to work.  Under the current system,
consumers in this situation must begin the 2-year disability
determination process all over again, and

e) tax incentives -- a tax incentive program that encourages businesses
to hire people who elect to leave the SSI and SSDI rolls.

More information on reforming the SSI and SSDI programs to promote
fairness and work incentives can be obtained through the National
Council on Disability at or through Employment
Support Institute at Virginia Commonwealth University at

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