HIV & Disability
Posted by pozlife on October 18, 2006
Changes to the federal disability application process could remove some high hurdles that HIVers have had to jump to receive much-needed benefits
By Bob Adams
Applying for Social Security disability benefits can be challenging, to say the least. This has been especially true for HIVers, whose debilitating ailments often sound like symptoms of minor illnesses to analysts who are meant to be suspicious and prevent fraud in the federal system. But a new pilot program launched this summer in Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, and Vermont—and slated to expand nationally beginning next year—could significantly streamline the process and speed the review of disability claims.
While none of the changes were specifically tailored for HIV-positive applicants, many will nevertheless benefit HIVers by eliminating inefficiencies in the sometimes cumbersome and slow-moving application process.
“With HIV-positive people living longer and people still getting infected, you’re going to see HIV-related disability applications rise,” says Jason Roundy, program manager of client advocacy services at AIDS Project Los Angeles. “So anything that eliminates inefficiencies is a positive step for people with HIV.”
The new disability process being piloted in the Northeast has five key enhancements.
• Mandating a quick turnaround on approval—within 20 days—for people who are clearly disabled.
• Forming a Medical-Vocational Expert System that includes health care and workplace professionals to help evaluate applications and appeals.
• Creating a new position—the Federal Reviewing Official—to review state agency disability determinations as needed.
• Allowing an administrative law judge to rule on applications if an applicant disagrees with the Federal Reviewing Official.
• Creating a Decision Review Board to review and correct inaccurate disability determinations.
Most HIV-positive applicants will not fall into the “clearly disabled” category whose ailments prevent one from working, which is expected to include blindness, paralysis, amputation, and other serious medical conditions, according to Howard Schwartz, associate director of coordinated care at New York City’s Gay Men’s Health Crisis. But automatically approving certain other ailments, Schwartz says, should free up time and resources for speedier reviews of complex applications, including those from HIVers. The majority of the other changes, advocates say, will benefit all Americans simply through eliminating inefficiencies in the disability review process.
However, Roundy explains, one new provision that should directly aid HIVers is adding medical and vocational experts to the application review process. Many HIVers seeking disability benefits are unable to work because of such HIV-related conditions as fatigue or impaired cognitive function or even antiretroviral-related side effects such as neuropathy, nausea, and diarrhea. Having experts on the review team who are familiar with these pitfalls should help avoid unnecessary decision delays and reduce initial application rejections. “Essentially it’s going to shore up where Social Security doesn’t have the experience to look at or evaluate the case,” Roundy says.
One step that hasn’t changed is the need for applicants to detail why they are unable to work and to have their doctors provide specific evidence of their work-related disability, Roundy adds. “There has to be a very high level of clarity that an individual is incapacitated in some way,” he says. “You have to state very specifically that you are unable to perform key work activities.”
The good news is that most caregivers, AIDS service organizations, and other groups helping HIVers to file disability claims are more savvy about what it takes to document an approvable application. AIDS Project Los Angeles, for example, offers Social Security disability workshops for clients twice each month.
“We’ve had 25 years’ experience at this at this point,” Roundy says of the agency. “Doctors are better at explaining why a client is disabled. The populace is better at clarifying conditions that are disabling. We’re better at coaching them through that. The goal is to have a positive outcome on the first evaluation, and fortunately we’re all much more experienced in achieving that.”
There are two types of federal disability benefits: Social Security Disability Insurance and Supplemental Security Income.
SSDI is available for people who have a substantial work history and is based on an applicant’s lifetime average earnings and Social Security contributions. The higher the earnings and contributions, the larger the monthly benefit.
SSI is available for people with few assets and a limited income or work history. SSI benefits are lower than those provided by SSDI, but some states augment the flat federal amount provided—currently $603 for a single person.
Why HIV Isn’t a Disability
It’s the accompanying ailments and side effects that matter when qualifying for benefits
Simply having HIV—or even receiving an AIDS diagnosis—isn’t enough to qualify an individual for federal disability benefits, according to Howard Schwartz, associate director of coordinated care at Gay Men’s Health Crisis in New York City. “It’s the medical ailments and the day-to-day symptoms that prevent someone from working that are important,” he says. “It’s really all connected to employability.”
And it’s your doctor who plays the key role in securing your disability benefits. Your primary care physician must agree that you are unable to work and fill out forms detailing precisely why that is the case. “For people dealing with a complicated HIV-related disability, it has to be very carefully spelled out,” cautions Jason Roundy, program manager of client advocacy services at AIDS Project Los Angeles.
But you can certainly help document your claim, Schwartz and Roundy say. If your anti-HIV medications give you severe diarrhea, keep a journal noting how many times a day you use the restroom while at work and how long each visit keeps you away from your desk or workstation. If you’re nauseated, keep a record of when and how often you experience symptoms on the job. If you’re fatigued, chronicle what work-related tasks—or even simple activities like standing or walking—you’re too tired or weak to perform.
“Be specific up to and past the border of being graphic on the kinds of issues you deal with that are related to being disabled,” Roundy urges. The more detail you provide, he adds, the easier it is for the people reviewing your disability application to clearly understand your work-related restrictions.