This petition is for consideration for families of patients with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease. ALS is a horrible disease that slowly, over a space of years, takes away the control of the patient’s muscles. The patient will lose the ability to walk, eat, and even breathe. There is no cure and the patient eventually dies, usually 3 to 5 years after diagnosis. Currently, Americans have been generous with support for many ALS patients. Social Security recognizes ALS as a disability. ALS patients with current work histories can apply for Social Security Disability Insurance (SSDI) and patients with no financial support can apply for Supplemental Security Income (SSI). When on disability, these patients are also covered by Medicare. However, if there is a non-working member of a family with ALS, they are not eligible for SSDI and if the family has income and assets, the patient is not eligible for SSI. This can put a financial strain on the family. As the patient loses the ability to care for themselves, someone must be available to care for them full time. The working member of the family must either hire a caregiver or quit work to become a caregiver. Caring for an ALS patient will require medical treatments, supplies, and equipment which are not always covered by insurance. For example, a used handicapped vehicle is good condition is over $30,000, a power wheelchair can be over $25,000, communication equipment can cost $15,000, and tube feeding via percutaneous endoscopic gastrostomy (PEG) costs $31,000. Many of these costs are not covered by most medical insurance. The average cost of caring for an ALS patient is about $250,000. For this reason, ALS affects the entire family and financially affects the surviving spouse and children. Some marriages are destroyed so that the ALS patient can become destitute and be eligible for SSI. It is unfortunate that the support for a family is dependant on which family member is stricken with ALS. The regulations should be changed so that a ALS patient with a working spouse can be eligible for SSDI. This would allow the preservation of the family without the financial drain of care.
For example, when I married my wife, she already had over 20 years of social security credits. Soon after our marriage, she quit working to start our family. We were blessed with two boys and when they were in school, she tried to return to work. She was shocked that she was not able to perform her job and was terminated after a few weeks. After a year of medical investigation, she was diagnosed with ALS. Less than a year after the diagnosis, she was not able to care for herself and I took early retirement to become her caregiver. We were living off my pension, but permanently lost a quarter of it by taking early retirement .She applied for SSDI but was denied because she did not have enough work credits in the last 10 years. She applied again 2 years later and was denied again. We consulted an attorney but was told that the law was clear and she was not eligible. She was also not eligible for SSI because we were receiving my pension. Our only path for support would be to separate so that she would be eligible for SSI but we are not going to destroy our family for financial reasons.
There is legislation in place, S 578 and HR 1407, that is specific to Social Security waiving the 5 month wait period to get benefits. I would propose that this would be an appropriate amendment to the legislation.