EMPLOYMENT AND VOCATIONAL REHABILITATION ISSUES FOR PEOPLE LIVING WITH HIV/AIDS. A Report to the Obama-Biden Presidential Transition Team

Transcription

1 EMPLOYMENT AND VOCATIONAL REHABILITATION ISSUES FOR PEOPLE LIVING WITH HIV/AIDS A Report to the Obama-Biden Presidential Transition Team

2 EMPLOYMENT AND VOCATIONAL REHABILITATION ISSUES FOR PEOPLE LIVING WITH HIV/AIDS A Report to the Presidential Transition Team January 2009 INTRODUCTION People in the United States living with HIV/AIDS (PLWHA) often have improved health that allows engagement in employment, but have little or no access to vocational rehabilitation services. AIDS service organizations (ASOs) are restricted from using federal Ryan White HIV/AIDS program funds for providing employment counseling. Existing federal-state vocational rehabilitation agencies serving the general disability population are unconnected to the AIDS community, are often underfunded and uneducated about the needs of this population. ASOs and vocational service providers working in isolation need centralized access to the existing knowledge of best practices. According to the Health Resources and Services Administration people living with HIV disease are, on average, poorer than the general population. Today too many people in the United States living with HIV/AIDS (PLWHA) are consigned to lives of poverty and are obstructed from successfully engaging in employment. Financial and health insurance work disincentives combine with an underdeveloped service system to deny the tools and support structures needed by PLWHA considering and pursuing transitions to work In addition to these critical economic and quality of life issues, some preliminary evidence indicates that employment may be an important component of HIV prevention and increased health outcomes for many. In a recent study, 59% of employed respondents indicated that being employed reduced their engagement in risky health behaviors and 88% reported that employment improved their health and outlook on the future (Conyers, 2006). Although more research is needed to better understand these findings, employment status is not currently tracked by the Centers of Disease Control and Prevention as a potential structural issue associated with HIV prevention. BACKGROUND Individuals with HIV/AIDS, despite the overall improvement in their health, face a critical challenge from public health and economic policies: the vast majority of PLWHA do not have access to quality vocational rehabilitation/ employment services. This is due, in part, to the history of HIV as an emergent disability that initially resulted in rapid declines of health and

3 death, leading to a service system response that does not include planning for one's future. PLWHA have relied, as a result, on default services from an already overburdened and underfunded federal-state vocational rehabilitation (VR) system to respond to this need. To add to this issue, virtually no training has been provided to federal-state VR counselors to work with PLWHA. The vast majority of PLWHA do not know that federal-state vocational rehabilitation services exist. AIDS service providers are not trained to facilitate a connection to VR resources and many vocational rehabilitation employment related programs are prohibited from being funded through the Ryan White HIV/AIDS program, the largest concentration of financial and human resources responding to the epidemic in the U.S. Many states are now placing consumers onto waiting lists for VR services, which makes these non-resources. Often people who are HIV positive may be determined ineligible for state VR services although the combination of physical and psychological problems from HIV and related diagnoses creates disabilities. This leaves them with few other vocational service options, such as the WIA One Stop Career Centers; however, this resource faces the same challenges as the federal-state VR system with respect to serving people with HIV/AIDS. A body of research knowledge that identifies these concerns and best practices exists but is not yet widely disseminated and thus has not been incorporated into service provider practices or policy development. This scholarship reveals that there is a need for diverse forms of vocational service intervention for PLWHA. Although there is a demand for more information and resources emerging around the country, many agencies are struggling in isolation trying to figure out how to address this challenge. There is a need for a centralized source of information and structured networking opportunities to facilitate this process and use time and resources in program development more efficiently. The National Working Positive Coalition (NWPC) is the leading resource for this information and has established a structure for achieving this goal based upon grassroots efforts. It is essential that this centralized resource become further developed and more fully integrated into the overall AIDS services system. The broader issues of vocational rehabilitation and employment for individuals with HIV/AIDS need attention. Specifically: There is a strong correlation between poverty and HIV. Poverty can lead to unsafe sexual practices and exposure to HIV. By ameliorating poverty, vocational rehabilitation programs can help address issues of social isolation and self-esteem which are often associated with unsafe sexual and drug use practices. As an AIDS prevention measure, it is essential to develop vocational programs that help PLWHA, particularly poor women, have the economic resources through employment to care for themselves and their family, and to make choices that will limit exposure to HIV/AIDS. In poor and rural areas of the country where the HIV/AIDS rates match those in parts of Africa, new approaches can help create jobs, including economic development (microfinancing) initiatives that have been successful in other poor and rural communities to help to address the underlying poverty associated with HIV/AIDS.

4 No current resources exist to provide support to employed individuals with HIV to respond to work and health challenges, to ensure maximum adherence to HIV medications, and to help maintain and extend employment. Even when loss of employment is necessary, support for recovery and re-engagement can alleviate the economic and societal losses. A central repository of best practices for supporting work accommodations for disabled workers with HIV/AIDS could be a low-cost yet essential resource. With the economic stimulus plan, it is critical to reserve a percentage of jobs for individuals with disabilities (or to have some mechanism to make sure that individuals with disabilities have access to employment opportunities), including HIV/AIDS. Many of the challenges being faced by PLWHA mimic the challenges of those in the community mental health system. Great progress has been made in improving community mental health by integrating the Recovery Model and increasing expectations for hope and self-determination. This can be a critical resource of information to help lead policy and program planning for people with HIV/AIDS. RECOMMENDATIONS 1. Address the work disincentives in the SSDI, SSI, Medicare, and Medicaid programs. The National Working Positive Coalition fully supports the OBAMA-BIDEN PLAN TO EMPOWER AMERICANS WITH DISABILITIES. Most specifically, we support that document s fifth objective to establish a National Commission on People with Disabilities, Employment, and Social Security that will include presidential appointees, congressional appointees and the Commissioner of the Social Security Administration and the Secretaries of Labor and Health & Human Services as ex officio members with a charge to the commission that will include: Examining and proposing solutions to work disincentives in the SSDI, SSI, Medicare, and Medicaid programs. Revisiting the Ticket to Work Act to assess how it can better provide SSDI and SSI beneficiaries with the supports they need to transition into work. Considering opportunities to improve the results produced through the relationships between the SSDI and SSI programs and the workforce investment and vocational rehabilitation systems. Examining the sufficiency of SSDI and SSI benefit levels in light of available work opportunities for working-age people with disabilities.

5 Determining the sufficiency of the substantial gainful activity level in the SSDI program and whether it should be indexed to average hourly wages or some other measure. Studying programs that would help young people join the labor force rather than the SSI rolls. 3. The federal workforce development and vocational rehabilitation systems must examine the needs and issues of PLWHA and implement solutions to reduce the barriers and lack of successful utilization of those systems that exist related to stigma, and to address the inadequate training about HIV and its inter-related medical, psychosocial, financial/legal and vocational factors. 4. Establish a central resource for research and best practices for vocational rehabilitation and employment services for people living with HIV/AIDS, which can also work with local communities to establish local networks and apply/adapt models of practice to regional and local contexts. 5. Remove disincentives in federal policies regarding housing subsidies, disability income and health insurance benefits. 6. Strengthen the federal-state vocational rehabilitation agencies abilities to respond to the needs of PLWHA. 7. Support needed research on employment and vocational rehabilitation as an HIV prevention intervention including within the CDC s Prevention with Positives efforts. 8. Lift the restriction on the use of Ryan White funds for programs that link clients in AIDS service organizations with existing vocational rehabilitation and employment services. 9. Focus on poverty within the HIV/AIDS impacted communities including the specific challenges of rural communities, of those transitioning from incarceration, and of women living with HIV/AIDS. 9. Develop policies that recognize that despite medical advances, not all people with HIV/AIDS will be able to work; ensure that the quality of health care and economic supports are available to these individuals to maintain their dignity and perhaps lead to improved health and greater opportunities for community involvement, whether these contributions lead to paid employment or not. 10. Incorporate the principles of hope and self-determination in AIDS service provision that have been integrated into the mental health services system through the Recovery Model. 12. Recognizing that HIV/AIDS is an episodic disability, provide an opportunity for rapid reconnection to essential housing, medical, and other essential services to those who attempt work and are not able to sustain employment due to poor health, insecure job placements or labor

6 market fluctuations. This would be essential incentive for those who would like to work but are afraid of the impact of an uncertain health prognosis and having to risk exposure to greater poverty if their attempts to work fail or are met with intermittent interruptions as they continue to develop work skills and overall career development. CONCLUSION The impact of unemployment and under-employment of PLWHA affects not only those who wish to work, but also our families and communities. We can no longer sustain a model of public response which regards the individual no further than the indications of their progressive laboratory reports. The National Working Positive Coalition stands with great optimism for seizing the important opportunities ahead as we commit to the hard work necessary to move forward through the challenges before us.