Many people who had been disabled by HIV/AIDS are experiencing improved health and now struggle with whether or not to return to work or enter the workforce for the first time. They face a number of concerns including varying health, medication side effects, problems adhering to medication schedules during the workday, job-related stress and day care needs. Additionally, returning to work under the current system may cause them to lose previously gained health care benefits.
If the Work Incentives Improvement Act is signed into law, a lot of work will be necessary on the state level to ensure any new or expanded programs or benefits work for people living with HIV/AIDS. People with HIV/AIDS who are either working already or considering work will need to understand changes regarding health care coverage to make informed decisions about utilizing new programs. People living with HIV and their advocates need to be instrumental in implementing some of the bill's provisions so that support services meet the needs of all people with disabilities.
Several important state provisions are contained in the legislation, including some that individual states can choose to enact or not at their own discretion. Advocates and people living with HIV/AIDS and other disabilities must organize to encourage their states to make the choices that best meet their medical needs. The Work Incentives Improvement Act contains several important provisions as explained below.
Expanded Medicaid buy-in program for people with disabilities: This would allow some people who don't qualify for Medicaid to purchase Medicaid on a sliding scale basis. Monthly cost would depend on a person's income. Medicaid is the government insurance program for low-income individuals who qualify either by their connection to programs such as Supplemental Security Income (SSI) or Temporary Assistance to Needy Families, or by being medically needy, (e.g. very low income and disabled as defined by Social Security). Medicaid serves over 50% of people living with AIDS and 90% of children living with AIDS. The program differs from state to state, but in general it maintains strict criteria around how much money an individual can make and can save.
Under this bill, states would have the option to create a Medicaid buy-in program for working people with disabilities who do not normally qualify for Medicaid due to income and resources. Revising income and resource qualifications would allow many disabled people to earn a higher income and accumulate savings while still qualifying for Medicaid.
People who qualify for the buy-in program would be required to pay a monthly fee (called a premium -- a payment to keep insurance intact) to receive services. Monthly fees would be set on a sliding scale; the more an individual earns, the higher the monthly rate. A cap or maximum monthly fee amount comparable to other insurance rates would be established. People currently employed because their disability has improved enough for them to work would be able to buy into the program as well.
This buy-in program could give many people living with HIV the fallback and flexibility they need to determine if they should work and at what type of job. Some people would like to work but, for a number of reasons, may not be able to commit to high-paying, high-stress or full-time jobs. Often part-time work does not provide the medical benefits that people must have to maintain their health. A buy-in program with a sliding scale could reassure many that they could work at a job that accommodates their health condition.
Extension of Medicare benefits for working individuals: This would extend the length of time an individual can access Medicare after re-entry into the workforce. Medicare offers insurance to older Americans and disabled people who have worked in the past and have completed the Medicare waiting period. Medicare delivers over $1.4 billion in AIDS care. Part A of the Medicare program covers hospitalization and Part B covers doctor's visits and routine health care.
Under this legislation, Medicare benefits would be extended for ten years for disabled people who return to work. Currently, people returning to work can continue receiving their Medicare benefits for a much shorter period of time (usually about three to four years). People could continue their Medicare benefits without paying a monthly fee for Part A coverage. They would likely pick up the monthly cost for Part B. Part B premiums would probably be comparable to the fee paid by people covered under a group insurance plan, about $150 per month.
Programs supporting working people with disabilities: Under this provision, the Department of Health and Human Services would create grants for eligible states to help establish programs that support working disabled people. There are often barriers for disabled people trying to return to work. In the case of people with HIV/AIDS, it may be difficult to adhere to a complex medical regimen, negotiate an appropriate amount of sick days with a prospective employer or have access to facilities to rest during the day. As support programs develop, it will be important for people to clarify their needs so that appropriate support services are designed and implemented. These grants could also fund outreach campaigns informing people about work incentive programs.
Demonstration projects for individuals with "potentially severe disabilities": This proposal could be a very important tenet for people living with HIV. It allows states to provide Medicaid to workers who do not qualify as disabled, under the social security definition, but who are at high risk of becoming disabled if appropriate health care is not available to them. A potentially severe disability is defined as a condition that, without appropriate treatment, could be reasonably expected to lead to disability under the Medicaid definition.
People living with HIV could definitely be served under this type of program. Currently people living with HIV must progress to the Social Security definition of disability to qualify for Medicaid. In other words, people must wait until they become sick to access services under Medicaid. Under this type of program, eligible people could have access to health care services through Medicaid without progressing to disability.
Ticket to work and self-sufficiency program: States are mandated to provide work training and placement programs to people with disabilities who wish to enter the work force. Governmental vocational rehabilitation offices generally offer these services.
This ticket-to-work provision would allow disabled people seeking employment support services to present a ticket issued by the Social Security Administration (SSA) and obtain services at any approved employment network. The network could consist of community based organizations as well as government entities, allowing people to better tailor employment services to their individual needs. The tickets would be issued to disabled individuals who qualify to receive SSI or Social Security Disability Insurance (SSDI).
Work activity will no longer be the sole trigger a for disability review for some people: In order to remove barriers to people returning to work or entering the work force for the first time, this bill would change Social Security regulations so that work activity no longer serves as the only basis for review of an individual's disability status. Currently, if a person returns to work and completes a trial work period, it can trigger a continuing disability review (CDR). This could mean that people lose their health care coverage if they no longer qualify as disabled, since disability is a requirement for these healthcare programs. In the statute (the language that would become law) there is no income level attached to this provision. However, the Senate added report language (this is wording that does not carry the weight of law but indicates what Congress would like to see happen) that says that only people who make less than Substantial Gainful Activity (SGA - $700 a month) would be covered by this protection.
This provision would also allow for a quick reinstatement of benefits if a person could not continue to work for a generous time period after their benefits had stopped. Currently, once a person has completed any available trial work period, it can be difficult to reinstate benefits if s/he is forced onto disability again. This provision could be important for people who often fear losing benefits entirely if they enter, or re-enter, the workforce.
Work incentives planning, assistance and outreach: The SSA would establish an outreach program to help disabled people understand and apply their options, rights and responsibilities. It would also provide technical assistance to organizations assisting individuals returning to work.
Grants for advocacy services for people with disabilities who are going back to work: This provision would establish grants to states to provide advocacy services to assist disabled individuals in securing or returning to work.
Demonstration projects and studies: The SSA would be authorized to set up several programs to determine the effectiveness of reducing SSDI payments by one dollar for every two dollars earned over an income level decided by the state for the purposes of the program. Currently, the SSDI program discontinues SSDI payment completely after a person has been back at work for at least nine months and is making more than SGA or $700 per month. For this reason, under current law, an individual is far better off earning $699 than earning $701, because the full SSDI payment can still be collected. In order to avoid falling off this income cliff, people who may be able to earn more may feel it necessary to stay under the $700 limit to avoid losing their SSDI income. This is a clear disincentive for people who want to return to or enter work. This provision would allow a careful evaluation of program that provides more of an incentive to return to work.
In addition, this provision would establish other studies looking broadly at current work incentives and disincentives which may result in recommended changes in the various systems.
The Work Incentives Improvement Act has been hailed by some as the most important measure since The Americans with Disabilities Act. It will be critical for people with disabilities, including people living with HIV/AIDS, who consider working but fear losing their health care benefits.
Benefits counselors have noted that people living with HIV/AIDS who are ready to go to work are unwilling to take the chance that they might lose health care benefits, which -- if they got sick again -- could not be reinstated. Others are concerned that taking a job that allows them to earn slightly more than their current income could disqualify them for health care coverage. Other people are considering work but feel strongly that they need to seek a part-time job. They may also be deterred from working by the fact that part-time jobs often don't offer health care benefits.
The Work Incentives Improvement Act addresses many of these issues and has garnered strong support. It has been endorsed by the Senate with a 99-0 vote. It should soon pass the House of Representatives and the President has indicated that he will sign the bill if presented to him. It will be very important to support this act as it continues to move toward law. For more information on how you can support the legislation, contact Project Inform's Treatment Action Network at 415- 558-8669 x224 or email@example.com. Once the bill is passed and signed, advocates are needed to work at the state level to ensure that states implement the provisions and enact some of the options, including the Medicaid expansion demonstration projects that could serve low income people with HIV.
You can play a role in this by educating yourself about the details of the law. You might want to identify HIV/AIDS and other disability advocates in your state you can work with to educate your legislators and administrative officials. Several organizations have followed this legislation closely and can be contacted for more information. They include AIDS Legal Referral Panel in San Francisco, CA; National Council on Independent Living in Oakland, CA; and AIDS Action Council and National Association of People With AIDS in Washington, DC.
Project Inform can help with this research and provide tips on state advocacy. For more information, contact the Public Policy Department at 415-558-8669 or firstname.lastname@example.org