NAMI Position (summarized from the NAMI Policy Platform)
Government income-support programs (including SSI and SSDI) and the healthcare programs that accompany them (Medicare and Medicaid) should never force people with disabilities to be trapped in poverty and dependence by preventing even part-time work that promotes dignity and independence. These public disability programs (SSDI, SSI, Medicare, and Medicaid) must start moving toward including a new purpose of supporting individuals with disabilities in the workforce, especially people with serious brain disorders who have never been given the opportunity to move toward work and independence. SSI and SSDI should be transformed from a safety net into a trampoline, not only to catch people with disabilities as they fall out of work, but also to give them a boost back up into work when they are ready; thereby: a) benefiting individuals by enabling them to remain in the workforce as wage earners; b) adding skilled workers to the labor pool; c) allowing employment-service providers to serve many more participants; and c) benefiting taxpayers by assisting workers with disabilities to begin or continue to pay taxes.
In 1999, NAMI strongly supported the Ticket to Work and Work Incentives Improvement Act (P.L. 106-170). This important new law sets the stage for important improvements in disability programs that will enable SSDI and SSI beneficiaries to work to the greatest extent of their abilities. NAMI feels strongly that it is critically important for our nation’s public disability programs (SSI, SSDI, Medicaid and Medicare) to shift from their original purpose as early retirement programs for injured workers, into programs that foster work, independence and self-sufficiency for people with severe mental illnesses who have achieved recovery. People with severe mental illnesses and other disabilities should not be forced into (and stay in) poverty in order access Medicare or Medicaid. At the same time, these programs need to remain in place as federal entitlements in order to ensure that persons whose symptoms or impairments are so severe that they cannot work are not at risk for losing cash benefits or health coverage.
Understanding The Issue
Currently eight million individuals with disabilities are receiving cash payments from the Social Security Administration and receiving health insurance coverage through Medicare or Medicaid. (Twenty-two percent of SSDI beneficiaries and 30 percent of SSI beneficiaries are disabled as a result of a mental illness). Numerous independent studies have documented the rapid growth of these programs over the past decade. As many NAMI members know from experience, once an individual becomes eligible for SSI or SSDI, it is very difficult for consumers who have attained recovery through treatment to transition off of benefits toward employment and greater independence. The principal reason is threat of losing health coverage. This is especially true with part-time employment (an important first step for many consumers) that offers either no health benefits or inadequate or discriminatory coverage. For example, if an individual's income exceeds $700 a month, under the SSDI program, he or she will lose Medicare (after a limited transition period). Consequently, only one percent of the SSDI beneficiaries leave the rolls. Likewise, in the SSI program many beneficiaries who decide to go to work quickly find that they become ineligible for Medicaid coverage. These rules can be doubly frustrating for many adults with severe mental illnesses are who are dually eligible for both SSI and SSDI.
Finally, many consumers and their families have been frustrated by the inability of publicly funded federal-state vocational rehabilitation (VR) to effectively serve the needs of people with severe mental illnesses. Unfortunately, the public VR system is too often geared toward short-term interventions to place individuals with mild or moderate disabilities in jobs they are already trained for. By contrast, many adults with severe mental illnesses need long-term supports and services to keep them in a job after placement and to help them cope with the episodic nature of their illness.
Enactment of the new "ticket to independence" program in the new TWWIIA law offers great promise for allowing consumers to escape the current VR system and access employment and rehabilitation services that meet their real long-term support needs. A similar proposal was included in NAMI's 1997 report on the failure of the public VR system to serve adults with severe mental illnesses. This report, "Legacy of Failure", recommends a series of changes designed to make the VR program more flexible and responsive to the employment and training needs of consumers.
NAMI's Advocacy Goals and Strategies
NAMI strongly supports full implementation of the Ticket to Work and Work Incentives Improvement Act (P.L. 106-170) – both with respect to federal responsibilities for Social Security’s programs and new state coverage options under the Medicaid program. Among the key provisions in the new are:
Extended Medicaid for SSI beneficiaries
The new law adds two new optional eligibility categories for states. They will be able to offer Medicaid coverage to SSI beneficiaries who go to work and allow a Medicaid buy-in for people with disabilities who earn more than 250 percent of the poverty level. (States would have to charge a sliding-scale premium.) Because these are new options for states, NAMI and other disability advocacy organizations will have to work hard to convince state officials to offer these new options. (In the coming weeks, NAMI will be work with affiliates on model state legislation based on this new law.)
New Medicaid demonstration for working people
For adults with severe mental illnesses who are not yet on SSDI or SSI , the new law will allow states—at their option—to cover people with a "medically determinable impairment" that would make it necessary for them to get SSI and SSDI if they did not have adequate healthcare coverage. Lawmakers hope to stop growth in the disability rolls by giving people Medicaid coverage before they have to quit their job to meet the program’s strict eligibility requirements for assets and income. The new law also includes a new state "infrastructure" grant to design, establish, and operate supports for working people with disabilities and enhanced federal matching money for states that offer new buy-in programs.
Extended Medicare for SSDI beneficiaries
For SSDI beneficiaries, the law provides extended Medicare coverage for 4.5 years after a person enters the workforce and has earnings above the current "substantial gainful activity" (SGA) level, which will be $700 in 2000. This means that SSDI beneficiaries who remain disabled will still receive Medicare coverage if they go to work. The extension would give SSDI beneficiaries as much as eight years of Medicare—4.5 years on top of the existing trial work period and extended period of eligibility. (Currently, beneficiaries who return to work must pay Part A premiums after an extended period of eligibility.)
Easier re-entry to cash assistance
The new law calls for an "expedited re-entry" program that will allow people with episodic disabilities (such as severe mental illness) to immediately return to SSI and SSDI cash benefits if a short-term acute break forces them to leave a job. Currently, SSI and SSDI beneficiaries who leave the cash-assistance rolls to go to work must wait as long as two years when a relapse forces them to quit their job.
Continuing disability review protections
The new law protects SSDI beneficiaries who have been in the program two years or more against unscheduled continuing disability reviews (CDRs) that would otherwise be triggered by their working. It will also stop the Social Security Administration from using evidence of medical improvement to do an unscheduled CDR. Regularly scheduled medical CDRs, however, will continue. As it is now, many SSDI beneficiaries with severe mental illnesses fear that any effort to work will trigger a CDR that could cause Social Security to reclaim "overpayment." The CDR protections will take effect in 2002.
"Ticket to independence"
Another new program will give consumers a "ticket to independence" voucher so that they can choose their employment and rehabilitation provider and receive supports and services to keep them working for as long as five years. (The use of a "ticket" would stop unscheduled CDRs). Under this ticket system, which will probably to be up and running in 2001, rehabilitation and employment service providers will be paid only for successful outcomes, and "success" will mean keeping people off of SSI and SSDI and on the job. In contrast, the current vocational rehabilitation program concentrates on pre-employment assessments and services that do not work well for consumers with long-term, episodic mental illnesses.
Work incentive help
The new program will help consumers understand and use the complicated and often conflicting work incentive programs. It will provide accurate information about the consequences of employment for both cash benefits and healthcare coverage. Beginning next year, $23 million will be available to non-profit organizations to help consumers and to Social Security to place work incentive specialists in local offices.
"2 for 1" offset
The new law will require a study to evaluate a sliding-scale cash offset program in which cash benefits would be reduced by $1 for every $2 earned. This study is intended to show that beneficiaries should not abruptly lose all their cash benefits when their earnings rise above the SGA level for more than nine months. NAMI hopes it will be clear that it is only fair to allow beneficiaries to gradually give up cash benefits as their earnings rise.
For more information about NAMI’s activities on this issue, please call Andrew Sperling at 703/516-7222. All media representatives, please call NAMI’s communications staff at 703/516-7963.