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Frequently Asked Questions: Rehabilitation and Employment Services for PLWHA

March/April 2004

Isn't it just a few people living with HIV/AIDS that are able or want to transition to work?

No. First, it is important to recognize that the vast majority of PLWHA are in their prime work-potential years. Second, increasing numbers of PLWHA are living longer lives and experiencing longer periods of time with minimal or manageable symptoms. All of these individuals could benefit from rehabilitation-oriented services that are designed to support the restoration of adult functioning.

Furthermore, hundreds of thousands of PLWHA in the United States are already in the workforce. Dramatic new efforts to reinforce the importance of HIV testing are intended to inform hundreds of thousands more that they are infected. As HIV is understood more as an episodic -- perhaps lifelong -- disability, many HIV-positive workers are likely to need work-related services that support them in their efforts to remain self-sufficient whenever possible.

Studies in Los Angeles and San Francisco suggest that many PLWHA have a very strong interest in employment. A 1999 needs assessment conducted by the San Francisco Department of Public Health suggested that as many as one out of three unemployed/disabled PLWHA had an intention or desire to enter/re-enter employment within the following 6 to 18 months.

There is an urgent need for current national data on these issues. However, all trends point towards the increased need for employment-related services.

Why would a person with HIV/AIDS receiving disability and medical benefits under Social Security, Medicare or Medicaid want to work?

Permanent reliance on state disability benefits creates a status quo in which poverty is normative, stigma is inevitable, and PLWHA are marginalized as disabled dependents.

Work confers meaning, purpose, and identity. Work is the single most normative experience for adults in our society, containing profound economic, social, and even spiritual dimensions. Even unpaid work can play a vital role in creating a sense of worth and self-esteem and diminishing stigma. Many long-term benefits recipients seek to become engaged in productive activity to combat boredom and isolation.

Benefits recipients may be interested in supplementing their income by working part-time, and can be helped to do so without disrupting the necessary medical benefits upon which they rely. For those who transition to work full-time, it's possible that their activities will improve the benefits they'll be eligible for, should they need them in the future.

Aren't there already agencies that provide rehabilitation services for individuals with disabilities? Why should they be HIV-specific?

PLWHA and their advocates have only recently begun to engage vocational rehabilitation (VR) service systems. These systems are in the earliest stages of identifying and addressing our specific needs. Among other things, there are fundamental issues of cultural competence that still need to be addressed, and decades of stigma yet to be unlearned. VR service providers frequently have a limited understanding of the ways HIV disease impacts vocational development and the trajectory of rehabilitation. Moreover, VR systems are not designed to well serve individuals with any sort of episodic disabilities, having been designed originally to support the needs of injured combat veterans.

Vocational services that are HIV-specific can provide a substantial bridge to these other service systems, and empower PLWHA to use them effectively. They can play a powerful role in assisting rehabilitation efforts, which by their nature are often marked by great uncertainty, anxiety and self-consciousness, and complicated by medical needs and side effects. It is common to hear PLWHA state that they're much more comfortable taking the initial steps toward rehabilitation in an environment where they're confidant that their needs are understood, where they can be less conscious about visible and hidden manifestations of HIV disease, among people who have many of the same issues.

Doesn't the Social Security Administration provide guidance for persons on disability and wanting to transition to work?

The complexity of SSA rules and regulations can not be overstated. While recent legislation created meaningful incentives that make it safer for recipients to explore working, this legislation also made SSA rules and procedures yet more complicated and difficult to understand. The incentives impact differently on two wholly separate (though occasionally overlapping) income programs (SSI and SSDI), and two wholly unique health insurance programs (one of which, Medicaid, is administered differently in each of the 50 states). Even SSA leadership acknowledges that local representatives are often poorly informed about existing work incentives. Recipients of disability income frequently need specialized intermediaries that can interpret SSA guidance, and advocate for individuals with atypical needs. As it stands, current HRSA guidance doesn't really limit the ability of client advocates to assist their clients in understanding the impact of work on benefits, though some EMAs may fail to realize their need and capacity to do so.

Isn't it a simple process for people to transition to work after being disabled?

No. The process of entering or re-entering the work world is a complex process of rehabilitation influenced by many factors including: the episodic nature of the disease process; periodic changes to medical regimens; unresolved mental health issues and/or problems associated with substance abuse; education and training prior to onset of disability; work history, or lack thereof; awareness of and access to vocational counseling and training opportunities; and the willingness of employers to comply with the ADA in the provision of workplace accommodations.

For many people, HIV-related illness causes an interruption in work history or training, or delayed entry into the workforce. Furthermore, the nature of HIV disease itself and its physical changes may require a person to pursue entirely new career directions. Many PLWHA seeking rehabilitation services have limited and/or outdated job skills, especially in fields where there is rapid technological change.

Regardless of work history, learning how to integrate self-care, disability management, and adherence with the demands of work life can be challenging. These activities are further complicated by real and perceived issues of stigma and discrimination, along with difficult decisions related to workplace disclosure. All of these challenges can be met more successfully with quality HIV-specific support services.

What are the potential pitfalls for people living with HIV in attempting to transition to work?

Issues related to a non-static health status, psychosocial pressures to work and not work, unresolved challenges related to mental health and substance use need to be considered alongside the questions of vocational exploration and training. Fear, anxiety, and depression are common obstacles in this process. Issues of bad credit, debt and back taxes may be resolved in a less burdensome manner prior to employment than afterwards. Careful consideration needs to be made to the impact of work on health, as well as on various health and financial benefits. It can be quite challenging to maintain efforts at medical monitoring, adherence, exercise, and nutrition while working or training for work, and individuals may need assistance in assessing their capacities for such activities, and the best pace at which to do so.

Some PLWHA will need assistance in identifying and requesting reasonable accommodations from their employers, so that they can succeed in jobs for which they're qualified. Others will need assistance transitioning into the job, along with ongoing support for some period of time (and/or periodically) in adjusting to the balance of maintaining work and health, and responding to problems as they arise.

Is there enough information available for people with HIV/AIDS wanting to transition to work to be able to effectively negotiate the process without specialized assistance?

No. Current systems of governmental and non-governmental workforce development and rehabilitation are rarely client-centered, frequently complicated, often perceived as inaccessible to people with disabilities in general, and communities impacted by HIV/AIDS in particular. Without very effective self-advocacy, PLWHA often have great difficulty realizing the benefits of these programs. The need for specialized assistance in leveraging these services is the fundamental motivation for advocates who seek some limited capacity for CARE-funded rehabilitation and employment services.

Don't the "Ticket to Work" and "Work Incentives Improvement Act" programs under the Social Security Administration provide sufficient assistance?

No. The Ticket to Work and Work Incentives Improvement Act of 1999 (TWWIIA) provides important reforms to work incentives available to Social Security recipients, including "easy-back-on" provisions, an elimination of work-related Continuing Disability Reviews (CDR), extended Medicare coverage, and a provision allowing states to create "working while disabled" Medicaid buy-ins. These improved work incentives create the context in which many PLWHA are willing to take the risks associated with seeking employment.

The "Ticket to Work" program offers the possibility of greater consumer choice in identifying rehabilitation service providers. However, there are no guarantees that these providers will know anything about HIV or the work-related needs of PLWHA. Moreover, the program assumes that providers, called Employment Networks (EN), will have the wherewithal to wait the years it might take for reimbursement under a highly problematic formula. For many AIDS service organizations interested in providing work-related services, this reimbursement formula makes the program an irrelevant source of potential revenue.

Furthermore, "Ticket to Work" reimbursement relies on the achievement of employment that leads to suspension of benefits -- leaving out those who need access to vocational services which might yield unpaid work and/or limited employment intended to subsidize financial benefits. As of spring 2003, less than 1 percent of disabled beneficiaries who had been mailed their Tickets actually assigned their Tickets to an EN.

Why should we add Transition to Work as a permissible service under the Ryan White CARE Act?

Services rendered under the CARE Act were originally designed within a context of crisis -- one that held little hope for stabilization or improvement of health. We had little expectation that a majority of those PLWHA needing services would have the potential to live for decades after diagnosis.

Now that we recognize that the HIV disease process is neither stagnant nor one of inevitable decline, HIV services need to be re-engineered to reflect the new realities of the illness. Rather than anticipating (and at times creating) increased services dependency over time, the system needs to be changed to optimize autonomy and self-sufficiency whenever possible. Those who are wholly dependent on services may need support in recognizing their capacity for achieving greater autonomy, and assistance in developing necessary strategies and skills.

Services must always be delivered within a context of consumer control and consumer choice, one which recognizes a full spectrum of desirable outcomes including paid and unpaid work, full- and part-time work, work that includes benefits and work that is done while receiving Social Security benefits. Engagement in productive activity has been demonstrated time and time again to carry many and substantial benefits to people living with a wide variety of disabling conditions, including social integration, diminished isolation, improved sense of purpose and identity, improved mental health and quality of life, routine and structure to one's time, etc. In addition, targeted research efforts may demonstrate that structured engagement in vocational and employment activities positively impact health outcomes.

Finally, it needs to be stated that a growing population of PLWHA relies on the CARE Act for a broad range of health and social services. "Transition to work" services provide an avenue for compassionately reducing CARE Act caseloads by supporting improved autonomy for those individuals who want to and are able to make such changes. This can redirect diminishing resources towards those whose medical status makes them least able or least likely to care for themselves. Just as expenditures for benefits counseling and advocacy services have ensured that the CARE Act is the payer of last resort, local communities who choose to leverage CARE Act funds for transitional services may discover that they are better able to serve those most in need.

Eric Ciasullo and Karen Escovitz are with the National Working Positive Coalition (NWPC).

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This article was provided by Gay Men's Health Crisis. It is a part of the publication GMHC Treatment Issues. Visit GMHC's website to find out more about their activities, publications and services.