Addition of early-onset Alzheimer’s to Compassionate Allowances list
As a longtime advocate for those with Alzheimer’s, the Alzheimer’s Association was at the forefront of the effort to add early-onset Alzheimer’s to the Compassionate Allowances list. This victory will give those living with the disease expedited access to Social Security Disability Insurance and Supplemental Security Income.
Alzheimer’s Association Early-Stage Advisors speak out
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Jay and Laura Jones
“The process of trying to get a diagnosis, coupled with trying to secure disability benefits was exhausting and overwhelming – an unimaginable ordeal.” |
| When Jay Jones, diagnosed with Alzheimer’s at age 50, began the process of applying for Social Security disability benefits, he and his wife, Laura, had no idea of the process that lay ahead. Laura, a meticulous record-keeper, brought a complete set of the documentation from their 3-year diagnostic journey to their Social Security office. The Jones’ were convinced that their case – including a diagnosis from the top neurologist at Mayo Clinic – was compelling, yet they were denied. Eventually it took more than a year and help from an attorney to get approved.
Jay and Laura Jones shared the details of their challenging journey at the Social Security Administration’s (SSA) hearing on July 29, 2009. The hearing examined whether or not early-onset (younger-onset) Alzheimer’s disease should be included in SSA’s Compassionate Allowances Initiative.
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Joyce Simons
“This is a disease that should be included under Social Security’s Compassionate Allowances initiative – it is simply the right thing to do.” |
| In February of 2007, Joyce Simons was diagnosed with Alzheimer’s disease and vascular dementia at the age of 57. Alzheimer’s forever changed her life, forcing her to end her teaching career – one of her biggest passions.
Despite these heartbreaking challenges, Joyce remains committed to raising awareness and education about Alzheimer’s. She testified at the July 2009 Social Security Administration (SSA) hearing to tell officials why early-onset Alzheimer’s disease should be included in the Compassionate Allowances Initiative. In her remarks before SSA she said: “There’s nothing more I would love to do than to be back in the classroom working with my students, helping them to walk in their potential – but with this disease, it’s impossible.” |
May 2003 – The Alzheimer's Association submitted written comments to the Social Security Administration (SSA) on "Revised Medical Criteria for Evaluating Mental Disorders" for Social Security disability programs in response to Federal Register notice for comment.
June 2005 – The Alzheimer's Association submitted written comments to SSA on "Revised Medical Criteria for Evaluating Neurological Impairments" for Social Security disability programs in response to Federal Register notice for comment.
September 2007 - The Alzheimer's Association submitted written comments to SSA on "Compassionate Allowances" for Social Security disability programs in response to Federal Register notice for comment.
September 2008 – Alzheimer's Association representatives have meeting with SSA staff on Compassionate Allowances Initiative and on revision to Listings of Impairments.
September 2008 – The Alzheimer's Association sent a follow-up letter to SSA on Social Security disability listings and Alzheimer's disease.
Spring-Summer 2009 – Alzheimer's Association staff assisted SSA with the identification of witnesses, planning and outreach for the July 29, 2009, public hearing on Compassionate Allowances: Alzheimer's disease and related dementias.
July 29, 2009 – Harry Johns, President and CEO of the Alzheimer's Association and two members of the Alzheimer's Association Early-Stage Advisory Committee, testify at the public hearing on Compassionate Allowances: Alzheimer's disease and related dementias.
August – September 2009 – 600 people with Alzheimer's and other dementias and their caregivers respond to the Association's appeal to submit written comments to SSA about their experiences applying for disability benefits. SSA posted a sample of these comments on its Compassionate Allowances website.
August 2009 – January 2010 - Alzheimer's Association staff continue discussions with SSA staff on inclusion of Alzheimer's disease and related dementias on Compassionate Allowances list.
February 11, 2010 – SSA announces the inclusion of Alzheimer's disease, mixed-dementia and primary progressive aphasia to the Compassionate Allowances list. Harry Johns, President and CEO of the Alzheimer's Association, provided remarks on the announcement at the SSA press conference.
