SSA to add early-onset Alzheimer's disease to its Compassionate Allowances Initiative

Alzheimer's AssociationFeb 12 2010

Alzheimer's Association Statement

In its effort to improve and expedite the disability determination process, the Social Security Administration (SSA) has announced that it will add early-onset Alzheimer's disease to its Compassionate Allowances Initiative. The initiative identifies debilitating diseases and medical conditions that meet the SSA's disability standards for Social Security Disability Income (SSDI) or Supplemental Security Income (SSI). Inclusion in the initiative allows for faster payment of Social Security benefits to individuals with Alzheimer's disease.  The Alzheimer's Association applauds Social Security Commissioner Michael Astrue and the SSA for understanding that the cognitive impairment caused by Alzheimer's disease leaves individuals unable to maintain gainful employment and deserving of an expedited disability determination.

"As the leading research, advocacy, and support organization for Alzheimer's disease, the Alzheimer's Association has actively sought the inclusion of early-onset Alzheimer's in the Social Security Administration's Compassionate Allowances Initiative," says Harry Johns, President and CEO of the Alzheimer's Association. "Now, individuals who are dealing with the enormous challenges of Alzheimer's won't also have to endure the financial and emotional toll of a long disability decision process."

Since 2003, the Alzheimer's Association has been advocating on behalf of individuals with early-onset Alzheimer's as they navigate the Social Security disability determinations process and welcomes the SSA's decision.  Until now, individuals with early-onset Alzheimer's disease have faced a myriad of challenges when applying for SSDI or SSI, including a long decision process, initial denials, and multiple appeals.  Today's decision will simplify and streamline the SSDI/SSI application process and decrease the wait time for benefits, which for some has lasted as long as three years.  

There are currently an estimated 5.3 million Americans with Alzheimer's disease. Although the majority of Alzheimer cases are individuals age 65 and older, a significant number of people under age 65 are also affected by this fatal disease and have few financial options other than the Social Security disability program.

In addition to Alzheimer's disease, mixed-dementia and Primary Progressive Aphasia were also added to the Compassionate Allowances Initiative under the SSA's recent decision. To determine which diseases and conditions to include, SSA has held several public outreach hearings throughout the country that have included testimony from medical and scientific experts, as well as those directly affected by these diseases and conditions. The July 2009 Compassionate Allowance Hearing on Early-Onset Alzheimer's Disease and Related Dementias, held in Chicago, included testimony from Johns, several of the nation's top Alzheimer researchers, and caregivers and individuals with early-onset Alzheimer's who discussed the challenges they faced during the disability application process. During the day-long hearing, SSA officials heard about the terminal nature of Alzheimer's, the disabilities that often prohibit work in even the earliest stages of the disease, and the lack of effective treatments to modify or halt the progression of Alzheimer's.

In addition to participation in the hearing, as many as 600 people with Alzheimer's and other dementias and their caregivers responded to the Association's request to submit written comments to SSA about their experiences applying for disability benefits. A sample of these comments are posted on SSA's Compassionate Allowances website: http://www.socialsecurity.gov/compassionateallowances/statements.htm

The Social Security Administration's proactive efforts to "fast track" certain conditions will help to reduce the backlog of disability claims and, more importantly, ensure those claims that fall under this initiative will be decided within days instead of months or years.  

"The diagnosis of Alzheimer's indicates significant enough cognitive impairment to interfere with daily living activities, including the ability to work. This decision will help a significant number of Alzheimer families. It will also help the Social Security Administration, since long delays and appeals in the disability determination process are costly for the agency," says Johns. "The Alzheimer's Association praises SSA for this decision and remains committed to continue to work with Commissioner Astrue and his colleagues at the Social Security Administration in support of its implementation nationwide."