Special Report: Managing RSD
Out-of-pocket expense can be devastating
Financial burden adds insult to injury
Wilson H. Hulley, a member of the executive staff of the President’s Committee on Employment of People with Disabilities in Washington, DC, and a special assistant to both the Bush and Clinton administrations on disability issues, spends $1,600 a month for a custom pain preparation, and that is only one of the monthly out-of-pocket expenses he bears as he tries to cope with the crippling pain of reflex sympathetic dystrophy syndrome (RSD).
"My original injury was work-related. I work for the President’s Committee on Employment of People with Disabilities and I’m still trying to get workers’ comp to pay for the $1,600 a month," he says, adding that he’s already spent $18,000 of his own money for the custom preparation.
"Unfortunately, the philosophy of the workers’ comp and the Social Security Administration in Baltimore seems too often to be, If we just hold off, maybe the patient will just go away or die, and we won’t have to worry about it.’ I’m fortunate that I had money in the bank when this began. I don’t have any left."
At different points since his diagnosis, Hulley has been evaluated by three separate workers’ comp case managers who all filed reports attesting to his disability. "They all tried to advocate for me. And, they were sometimes treated quite poorly by others in the system. These case managers can be a pain in the side of the doctor and can be a gift to the patient trying to sort through the confusion of medical and employment benefits."
Hulley and the Reflex Sympathetic Dystrophy Association of America (RSDSA) in Haddonfield, NJ, are waiting for a ruling from the Social Security Administration’s Office of Disability that would help people like Hulley with severe RSD receive more timely benefits to help them pay for the treatments they need if they can’t work.
A survey conducted by the RSDSA found that an overwhelming majority of RSD patients can’t work full-time. Of more than 1,300 RSD patients surveyed:
• More than 38% of respondents report being unemployed because of RSD.
• Only 17.4% of respondents report being employed full-time.
• Roughly 5% of respondents report being employed part-time due to RSD.
• Just over 21% report being employed but not currently working because of RSD.
In addition, roughly 50% of respondents report receiving no compensation or disability payments to help with medical and living expenses with another 32.4% reporting that they have an application for compensation or disability now pending.
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