Mark Misrok is proof of the promise of vocational rehabilitation for people living with HIV in the U.S. He started out as a client and volunteer at the Positive Resource Center in San Francisco in 1992 -- and three years later became its program director.
Today, as president of the National Working Positive Coalition board of directors, Misrok believes that "we cannot bring an end to AIDS without understanding and addressing the total person. We can't avoid responding to the social and economic determinants that powerfully influence health and prevention outcomes. And that includes addressing poverty, social marginalization, unemployment and underemployment."
Misrok spoke with TheBody.com about the realities and resources for people with HIV considering the worlds of work and benefits.
There's More Out There Than Many Service Providers Know
Perhaps the biggest barrier to employment for people living with HIV is a lack of knowledge (including among HIV service providers) about the resources that are available to help people prepare for, obtain and keep a good job.
"There are elements of existing programs that many people don't know about or misunderstand and there's a lot of misinformation around how it may work for people," says Misrok. "One of the critical pieces that's needed is for everybody to have access to information that's accessibly presented and easily understandable about how it would work to pursue and obtain employment for people who participate in these programs."
He goes on to note that the current lack of factual, consistent information can lead to service providers not encouraging their clients to seek work, or even actively discouraging them from seeking work, which leaves "too many of us sitting on the couch, stuck in poverty." Research has long shown poverty as a major threat to health and prevention outcomes, as well as undermining the ability of medical interventions to work.
The loss of good workers is a troubling side effect of having benefits tied to employment. There are many creative, efficient people with unrealized potential who have HIV or other disabilities and would love to work -- if only they could do so without losing all their disability benefits.
Options for People on Disability Benefits
Those who receive Social Security Disability Insurance (SSDI) benefits may be eligible for a Trial Work Period (TWP). TWP was developed many years ago to encourage recipients to work when they can. It allows SSDI recipients a total of nine months (not necessarily consecutive) over a 60-month period in which they can earn an unlimited amount of income without lowering their monthly SSDI benefit -- but there are some stipulations, so SSDI recipients considering TWP should consult with a benefits counselor.
According to Misrok, if it passes, the Supplemental Security Income Restoration Act (SSIRA) would help those on Supplemental Security Income (SSI) benefits. Because the amount of income a person is allowed to earn and still be eligible for SSI has not kept up with inflation, the amount an SSI beneficiary can earn should be 5.5 times greater than it is now. The legislation would increase allowable income and resource levels to their intended values and index them to inflation, thus pulling millions out of poverty and encouraging employment.
The SSIRA was originally introduced in 2013 by Arizona Democrat Raul Grijalva in the House, and in the Senate this year by Democrats Sherrod Brown of Ohio and Elizabeth Warren of Massachusetts.
"Getting to Work" Initiative
One encouraging effort is the development of an online curriculum specifically to educate HIV service providers so that they have access to information with which to help their clients. This initiative was created by the Department of Labor in collaboration with the Department of Housing & Urban Development (HUD) and the National Working Positive Coalition, including Misrok.
"There's a tremendous potential for it being an improvement in the access to really strong introductory-level information," he says enthusiastically. "It was designed for HIV service providers, but I think many people living with HIV would find it helpful and interesting."
Disclosing ADA Accommodation Needs Doesn't Require Disclosing Your HIV Status
The Americans With Disabilities Act (ADA) clearly includes HIV as a covered and protected disability. It grants those living with HIV the protections and rights of the ADA, including "reasonable accommodation," but employers are not bound by law to provide reasonable accommodations unless the employee has informed them that he or she has an ADA-covered disability and needs accommodations.
"Many people living with HIV may not need accommodations in order to pursue and obtain employment, but some of us would be able to be employed if we could get accommodations that we need," Misrok explains. "It's true that in order to get those protections, you have to disclose that you have a covered disability under the ADA. It may not be necessary to disclose your HIV status. Some people may be able to ask for and receive an accommodation by disclosing that they have a managed health condition, for example, that requires time off for medical appointments or breaks to deal with medication needs."
The Job Accommodation Network, a service provided by Department of Labor, offers consultations about the law and accommodations in the workplace.
"It should be possible for all people living with HIV, other disabilities, and chronic health conditions to easily find information and consulting on how to stay at work or go to work in a way that matches their needs, well-being, and personal choices," says Misrok. Below are some resources that may help.
- National Working Positive Coalition (NWPC)
- Department of Labor's Office of Disability Employment Policy (ODEP)
- Job Accommodation Network
- Getting to Work
- Work Incentives Planning & Assistance (WIPA)
- State Vocational Rehabilitation Agencies (VR)
- American Job Centers (AJC)
- Ticket to Work
Educational resources are also available for those who think they need additional education or training. These require a bit more time and effort to find and tend not to offer large amounts of money, but can help with certifications in some instances. To find more than those listed below, search for "HIV Scholarships" online.
Sue Saltmarsh has worked in the HIV/AIDS field for over 20 years, the first 10 as an herbalist and energy therapist at Project Vida, the last six as a writer and copy editor for Positively Aware magazine. She is now a freelance writer and editor and is also able to devote more time to her passion as founder and director of the Drive for Universal Healthcare (DUH).