Monday, August 3, 2009

Compassionate Allowances

On July 29, the Social Security Administration held a hearing on the need for Compassionate Allowances for individuals with younger-onset Alzheimer’s. Harry Johns, president and CEO of the Alzheimer’s Association, was among the experts who testified for a need to streamline the application process for Social Security Disability. By including younger-onset Alzheimer’s and related disorders on the list, the waiting period for benefits will be greatly reduced. In his testimony, Johns said, “Through the Compassionate Allowances process, Social Security can avoid the extra costs to the agency of numerous appeals and families can avoid the financial and emotional toll of going through a long decision process.”

I was interested in the testimony about primary progressive aphasia. Although many people are aware of Alzheimer’s, including early onset, they are not aware of the lesser known related disorders. When I read the testimony of Darby Morhardt, LCSW, in support of primary progressive aphasia, I was surprised to find that Frontotemporal Dementia (FTD) was placed on the Compassionate Allowances list in 2008, but not Alzheimer’s disease and related disorders.

Considering the difficulty of diagnosing which particular type of dementia a younger person may have, I don’t understand how FTD can be on the list and not Alzheimer’s and related disorders. Placing FTD on the list was a proper move, but that addition in itself speaks to recognition of the devastating financial and healthcare problems caused by dementia when individuals are too young to qualify for regular social security.

If younger-onset Alzheimer’s and the lesser known related disorders are added to the list of Compassionate Allowances, it would speed up the social security process for this group who falls between the cracks.

When Jim was diagnosed with dementia of the Alzheimer’s type, his attorney told us it could hurt his social security disability claim. We had gone through countless appeals for disability based on Jim’s loss of motion and constant pain in his neck and shoulder. We were in the final appeals process when Jim began to lose his ability to communicate. His aphasia made it impossible for him to present a coherent testimony at his own disability hearing. Our attorney asked us to wait in the hallway while he presented the successful appeal to the judge. We had been in the appeals process so long that Jim received back pay and retroactive Medicare.

The very nature of dementia impedes the disability process. Jim was one of the lucky ones. Not lucky in receiving his social security in a timely manner. He was lucky because I had a job with health insurance.

What happens to those with younger-onset dementia who get stalled in the process because they cannot speak for themselves? How does a family survive when a person with Alzheimer’s cannot work and requires constant care?

Too many times a person with younger-onset dementia loses his job before diagnosis. Often a loss of employment means the end of health insurance. Without a job and the inability to get a new job, it is impossible to afford COBRA. It can easily take two years to get a diagnosis of early-onset dementia and even longer to receive a favorable disability determination.

When a person of any age is diagnosed with Alzheimer’s or related dementia, it places the entire family under emotional stress and financial strain. To include younger-onset Alzheimer's type of dementia on the Compassionate Allowances list would relieve families of one of the frustrating worries following diagnosis.



Carol Noren Johnson said...

I agree, although my husband was diagnosed at age 71 and since he has Social Security, he wouldn't get that benefit, I believe. What do you think?

L S Fisher said...

No, the Compassionate Allowances list is to expedite the process for Social Security Disability. People that received regular Social Security will receive benefits when they reach a certain age. People who have worked and paid into Social Security for a qualifying period of time can receive disability at any age, but have to prove they are disabled.It is a long, drawn out process. Right now, even if approved for disability, a two-year waiting period for Medicare applies.

Unknown said...

My mother was diagnosed with early onset FTD at age 52. We are lucky that SS did not give us any problems because the Alz Society would not help and she was too young for any other services.

She is now 60 and living in a nursing home.

L S Fisher said...

Jen, I am so sorry to hear about your mom. My husband developed dementia at 49. I understand what you mean about too young for services. Almost everything is set up for 65 and older.Thank goodness, social security came through!

Part of my passion for the Alzheimer's Association is because my local chapter was the only ones who helped me. They provided respite funds when Jim didn't qualify for anything else.

My best wishes are sent your way. Bless you and your mother after (at least) eight years into your journey.