Returning to work after disability; what you should know.

Interview with Eric Ciasullo, manager of the San Francisco Department of Public Health's HIV/AIDS Return to Work Initiative. Ciasullo is currently Chair of the Board of Directors of the National Association of People with AIDS (NAPWA), and was recently appointed to the California State Rehabilitation Council.

Tens of thousands of people with HIV want to return to work at least part time but are afraid of losing medical benefits, or losing disability income and then being unable to work in the future. Recent Federal legislation has reduced this problem, but information, planning, and expert advice are still essential. Many people need retraining or new skills in order to re-enter the workforce successfully; often excellent opportunities are available through state government rehabilitation departments, but the HIV world has not been familiar with these services. Others ran up huge tax, student loan, credit card, or other debts while trying to stay alive; they may be able to renegotiate some of these debts while they are disabled, and should do what they can to clean up these problems before leaving disability and returning to work.

Recently, Governor Gray Davis of California appointed AIDS advocate Eric Ciasullo to the California State Rehabilitation Advisory Council, which oversees the California Department of Rehabilitation. Mr. Ciasullo has long been active in HIV prevention, housing, and other services--most recently in helping people with HIV consider returning to work, and getting any help they need to return to work successfully. He himself has been on AIDS disability and is now working full time for the San Francisco Department of Public Health. AIDS Treatment News interviewed him on October 10, 2003, in San Francisco.

In the interview Mr. Ciasullo suggested a number of resources, most of them available on the Web. They are listed in a separate section below. In some areas it may be difficult to find good advice on benefits and other issues in planning for returning to work. You might start by asking your doctor for a referral, or asking a ease manager or social worker if they could help, or could refer you to an expert. You might check with your local health department, especially if you do not have a case manager already. Some questions could be answered by the National STD/AIDS Hotline, 800-342-2437, 24 hours a day seven days a week. This hotline also has a number for Spanish speakers, and TTY access for the hearing impaired; TTY is 800-243-7889 Monday through Friday 10 a.m. to 10 p.m. Eastern time.

In addition, the Social Security Administration funds organizations in every state to assist beneficiaries in making choices about work (see the Social Security service providers list at the end of this article). The best benefits advisers in an area may work out of other offices as well. Before talking with an expert you might want to read background information--for example, see the Web sites in the Resources section at the end of this article.

ATN: Could you give some examples showing the kinds of issues people face when leaving disability and returning to work?

Eric Ciasullo: Everybody's situation is so different. It is hard to show a few representative examples, so much as dynamics that occur across the board but to different degrees. For instance, in San Francisco we've found that more than half of those interested in work want to do something very different from what they did before disability. Many people want to do work that feels meaningful. Many of us have been recipients of social services and want to give something back. We tend to be less tolerant of activity that is not directed to a human bottom line.

Because HIV disproportionately affects people based on race, education and class, many of us were untrained or under-trained workers. We may never have really been in the workplace, or if we have, only as casual labor. We may have worked in what some folks refer to as the "underground" or unregulated economy. We may need to be trained in work that is not physical labor, or where we will not be on our feet most of the time, because there are still a lot of physical considerations with HIV. We may need reasonable accommodations--like being able to sit down, take frequent breaks, nap in the afternoon if necessary, or take more bathroom breaks than some of our co-workers. The more skilled we become as workers, the more likely we are to work for employers that are able to make these kinds of accommodations.

ATN: What about returning to work at least part time, earning income and being able to keep medical benefits, or to go back on disability if necessary?

Ciasullo: Recent changes in Federal law have made this easier [see discussion in the "Financial and Legal ..." section below]. But still it is very important for people considering work to meet with some kind of benefits counselor or advisor, so that they understand the particularities of their situation, and the impact of work on benefits.

Disabled workers with HIV are usually on SSI or SSDI. These two Federal programs work in completely different ways. The incentives are totally different. The attachment to health care is totally different. State by state access through Medicaid is totally different. Of course, most people with HIV don't have private disability policies, but even those policies are all written differently. Even the earning limits that allow people to access the AIDS Drug Assistance Program (ADAP) are different county by county. That's why it's so important for people to get good information and advice before they make decisions about work.

For many of us who are concerned with helping PLWHA work through their barriers to employment, the Kohlenberg/Goldblum Considering Work Model is helpful in describing four overlapping arenas that need to be addressed: Medical, Financial/Legal, Vocational, and Psychosocial. [See the Considering Work model, in the Resources section below.]

Medical Considerations

In the medical arena it's typical for folks to be asking, "am I really well enough to work? What if I have to change meds, or the reeds stop working? How will the stress of working affect my health? Will my adherence be compromised--will I be able to take the medications correctly and consistently? Can I manage my meals around my meds while still working? Will I be able to manage my other daily activities while still working? Is my health stable enough to go back to work, and what will happen if it changes?"

For many of us, health maintenance is a pretty careful and delicate balancing act, and integrating self-care activities with the demands of employment can be a formidable challenge. That's one of the reasons why many of us encourage people to gradually increase their activities: maybe first try creating a sort of "shadow work" schedule of training or volunteer work, then if they can, start working first on a part-time basis.

Financial and Legal--New Ability to Work and Keep Federal Benefits

In the financial and the legal arena, people are frequently very anxious about what will happen to their financial and health benefits if they start working, particularly if they're not able to maintain their work efforts. Often we had to fight really hard to get benefits, and it's natural that we'd be concerned that even talking about work could jeopardize the essential stability that those benefits provide. In fact, until just recently, work activity could trigger a continuing disability review (CDR) of your Social Security benefits. Fortunately, that's no longer the case; the Ticket to Work and Work Incentives Improvement Act of 1999, or TWWIIA, brought important improvements. Some of the most prominent features of the legislation are that a CDR cannot be triggered by work activity, and if a CDR is actually scheduled, the fact that someone is working cannot be used to demonstrate that they are not disabled.

Also, there has been a significant increase in what people can earn on the books, legally, while maintaining all of their SSDI benefits, and/or a portion of their SSI benefits. This is why I always emphasize that part-time employment is something that a lot of us should really consider to improve our financial situations, and to look for some of the social benefits that come from working.

For people whose SSI or SSDI benefits are discontinued due to earnings, there's a five-year period in which the process for getting back on benefits is greatly expedited. The actual rules are quite different for SSI and SSDI, though, so it's very important to find out exactly how the different programs work.

But the anxiety remains--what happens if I give up my benefits so that I can work, then have to stop working? Some of these concerns are inevitable given the uncertainties in our lives, but some of them are rooted in old rules that are no longer in place. A lot of folks still have a very limited understanding of what the new work incentives are.

I encourage people considering work entry or reentry, especially if they have the freedom of some time, to take advantage of training opportunities, to try to be patient enough to look for a job that's going to be rewarding, one that has private group health insurance, and if possible, to find an employer with a private disability insurance policy. With those things in place, the gamble you are making on your health is that if you are able to sustain your efforts for a couple years, should you become disabled and unable to work again, your financial standing will be better than it was before you went back to work. That should be part of the incentive that we're creating for ourselves.

ATN: What about continuing Medicaid and/or Medicare, if someone finally leaves disability and can go back to work but is unable to get insurance through the job?

Ciasullo: Well, the rules are different. Medicaid is attached to SSI, and Medicare is attached to SSDI. Medicare continues for almost 8 years after SSDI benefits have ended. Medicaid is trickier, because it involves both federal and state laws. Under the new Federal work incentives, however, states have the option of providing Medicaid to working people with disabilities whose earnings are too high for them to qualify for Medicaid under other existing rules. The intention--and we will have to lobby state by state--is that if I am on SSI and went back to work, I should be able to purchase Medicaid for an affordable price. So if we organize around this effectively, and in this AIDS activists really need to take the lead from our colleagues in the cross-disability community, many of us will have a capacity to buy into a state-sponsored plan even if we're not covered by group health insurance policies.

Vocational Training

If we're honest with ourselves, many of us who are on disability have energy that we could put to productive use. Most of us who aren't desperately fighting for life right now might have some ability to work with some of our time. Many experts believe that work plays a vital role in maintaining our physical and mental health, that it alleviates depression, contributes to a sense that life has meaning, and keeps us engaged as active participants in our communities. Maybe that work won't be paid employment; it may start with sustained activity that benefits other people as volunteer work or an internship, or it may be school and training.

Even those of us who left the workforce with job-related skills might find that the skills we had are out of date or no longer relevant. Some of us aren't able to do the kind of work we previously did, even if we don't need retraining for that job. Or health and stamina, the vagaries of living with the virus, might demand that we limit our activities to part-time employment, or intermittent employment, or a job that is basically sedentary.

The reality is that most of could find real benefit in taking time for ourselves to deal with unresolved issues around basic education, or to get trained or retrained for jobs that make sense for our lives now.

State Departments of Rehabilitation

ATN: I was amazed at the employment help and services a friend of mine was able to get in California. He does not have HIV but was disabled in an automobile accident. With help from the state, he has been able to return to work full time.

Ciasullo: He probably received services from the California Department of Rehabilitation (DOR). Unfortunately most folks in "AIDS World" are unfamiliar with these state agencies (called vocational rehabilitation in some states). Before the recall, Governor Davis named me to the State Rehabilitation Council, the body that provides oversight to issues of policy planning and consumer advocacy, to the state Department of Rehabilitation in California. Federal law mandates that every state VR agency seats such a Council, and it's an arena I'm hoping other AIDS activists will start to explore.

In San Francisco, fully 15% of the clients that DOR serves right now are people living with HIV who are looking to enter or re-enter the workforce. The San Francisco District of the Department of Rehabilitation has shown amazing leadership in setting up services for people with HIV and doing outreach to the AIDS community. Unfortunately, this isn't the case nationwide--or even statewide--and a lot of work needs to be done to educate folks in "AIDS World" about the kinds of services that the state departments of rehabilitation can provide--and to educate these departments about the particular needs of people with HIV.

My friend Betty Kohlenberg is a private rehab counselor who teaches that HIV is really very distinct from other disabilities. It affects every body system, has social implications beyond any other disability, maintains incredible stigma and issues of social judgment; these issues have direct bearing on PLWHA who are interested in re-entering the workforce.

The fact is, many rehabilitation agencies are not familiar with our issues. There are still a lot of stereotypes and misconceptions, and basic ignorance about the nature of HIV disease, that need to be overcome within many public agencies. It is still common to hear of disability counselors erroneously assuming that workers with HIV pose certain health risks--like telling their clients that they cannot go back to work in the restaurant industry because they're "contagious"--still operating on misconceptions from 20 years ago and not realizing that most HIV-positive workers pose no threat to customers or co-workers. There is still a lot of work to be done.

The benefit of state rehabilitation organizations is that frequently, and certainly in San Francisco, people with HIV are getting support that just cannot be found anywhere else to help them with training, sometimes even with college or graduate school, along with career counseling, job placement services, and a host of vocational assessment services. Different states are funded to different degrees and have different rules for operating. But even in states that are fairly well funded for vocational rehabilitation, there is still a need to bridge the communities, and to find funding that will help give people with HIV the tools they need to gain access to those systems, and to provide some of the training and outreach we need for those systems to help them understand the needs of people with HIV.

Psychosocial Issues

Even when people are medically stable, supported with legal and benefits information, and armed with training that can make them competitive in the workforce, there can be a host of psychosocial barriers to employment. Often people who have been out of the workforce for a long time are dealing with internalized stigma around that fact alone, let alone their HIV diagnosis. There may be significant unaddressed issues around depression or anxiety. Because of the social isolation many of us experience in disability, some of us might need some help re-entering a more mainstream environment. We may need to do it in stages.

Getting ready to enter the workforce can also destabilize our social networks. Sometimes friends and family can discourage us from taking risks associated with returning to work, or pressure us to leave well enough alone. Sometimes friends who are also disabled can feel threatened by our efforts to "mainstream." These are serious issues which need to be addressed as such--our social networks are really important to us, and sometimes have been the "x factor" keeping us alive this long.

For some people who have been disabled with HIV, addiction or drug abuse was an issue before the diagnosis, or became one after the diagnosis. So changing our relationship to drugs and alcohol can be part of the process of work re-entry. In California, for instance, there is a widespread acceptance of the benefits of medical marijuana, which can be particularly helpful in dealing with some of the nausea associated with a lot of HIV meds--but using it habitually can create problems in many work settings.

And for PLWHA in the gay community, the incredible epidemic of crystal (amphetamines) can be an obstacle to employment in a league of its own. I don't want to talk about this in simplistic terms, and I haven't seen any research to support this, but it strikes me that for some of us, disability can be a gateway to addiction--and when this is the case, it needs to be addressed head-on if folks are going to have any lasting success in their efforts around entering or reentering the workforce.

[Part II of this interview will include the Ticket to Work program, handling debts before leaving disability, current developments around returning to work, and an expanded Resources list.]

Resources Quick List

Part II of this interview will have the full resources list. Meanwhile, here is a list of some sites with information:

http://www.ssa.gov/work

http://www.ssa.gov/work/ServiceProviders/bpaofactsheet.html

http://www.bkohlenberg.com

http://www.phoenixrisingreetury.org/

http://www.workingpositive.net/

The following two sites focus on California as well as the U.S.:

http://www.apla.org/apla/worksvcs/workindex.html

http://www.positiveresource.org/