The Social Security Administration announced this week that younger onset Alzheimer’s has been added to the list of conditions covered by its Compassionate Allowances Initiative. This is good news for families with a loved one who developed dementia prior to age sixty-five.
Those of us who have had family members with early onset dementia know how difficult and frustrating the system is to navigate. Early onset means your loved one is too young to receive regular social security or Medicare. Younger people with a disability must apply for Social Security Disability Insurance and Supplemental Security Income. Once a disability is determined, it can take years of denial and appeals before the disabled person receives benefits.
When Jim developed dementia at forty-nine, we discovered he was too young to receive many of the benefits in place to help older adults. The only financial assistance I was able to find for respite care was the Alzheimer’s Association. They had limited funds available, but even those limited funds helped. Jim was too young for respite funds through the Division of Aging.
Fortunately, I was employed and had health insurance. Because of my health insurance, we were able to get Jim the best treatment possible.
Before this latest development, the long delay for Social Security disability left many families financially destitute. Too often the person with dementia loses his job before being officially diagnosed. Job performance suffers from the earliest dementia symptoms. Loss of job could mean loss of insurance. In addition to the emotional toll, the dire financial strain associated with younger onset Alzheimer’s is overwhelming for the family.
Compassionate Allowances greatly reduces the wait time before benefits take effect. Not only will this relieve some of the financial burden of an expensive disease, it will also let people benefit from early treatment at the time when treatment is most effective.
Since 2003, advocates have shared their personal stories about the hardship caused by delays in Social Security disability benefits for their loved ones. Each year at the Alzheimer’s Association Advocacy Forum in Washington, DC, we have asked for a reduction in the wait time for Social Security benefits. Our voices were heard and the Social Security Administration hosted a public hearing in Chicago last summer to consider the validity of adding Alzheimer’s to the list of diseases to be fast-tracked for benefits.
Alzheimer’s at any age is a difficult disease for the entire family. In younger onset, children may still be in the home, and families have been forced to make difficult decisions. A child’s college fund may be used to provide medical or respite care for the parent with dementia. Some families may still have to make these tough choices, but others will find adequate financial relief from Medicare and Social Security Disability benefits.
Next month, the Alzheimer’s Association will hold its Advocacy Forum. Advocates will come from throughout the United States to bring awareness of how Alzheimer’s impacts our future as a nation. It is imperative that we invest in the future of our country by finding effective treatment for Alzheimer’s and by taking care of those with the disease.
Each year new advocates attend the forum. Advocates are updated on current statistics, attend a candlelight vigil, and receive training on how to make the most of their time with their legislators. We deliver packets of information to our senators and representatives, but more important than the alarming statistics is sharing our individual stories with them.
Advocates give a face to the disease. They share how devastating the disease is on a personal level. Some advocates only participate once, but others return year after year. This will be my tenth consecutive forum.
This will be the first forum for my friend, Cindy, and my twelve-year-old granddaughter. I took my grandson when he was twelve, and now it is my granddaughter’s turn. I have two smaller grandchildren and by the time they are twelve, they will probably have to take me. I hope each of my grandchildren experiences being an Alzheimer's advocate.
Alzheimer’s Association advocates chip away at the obstacles the disease throws in life’s pathway. Alzheimer’s addition to the Compassionate Allowances Initiative is a leap in the right direction. Families dealing with early onset dementia now have one less hurtle to overcome. Alzheimer’s is a disease fraught with problems, and eliminating the long wait for Social Security Disability is a victory.