Disability Benefits Now Easier for People with LBD
LBDA is proud to announce that our advocacy efforts on behalf of LBD families to the Social Security Administration (SSA) have resulted in the specific inclusion of Lewy body dementias in the Compassionate Allowances program.
Originally, only early-onset Alzheimer’s disease and ‘mixed dementias’ were included in the program. Leaders from LBDA and the Scientific Advisory Council met with representatives of the Compassionate Allowances program in 2010 and also issued a public comment on the disability needs of people with LBD.
The Compassionate Allowances program fast-tracks disability decisions to ensure that Americans with the most serious disabilities receive their benefit decisions within days instead of months or years.
LBDA's Public Comment on the Social Security Administration's Compassionate Allowance Program:
The Lewy Body Dementia Association (LBDA) supports the Social Security Administration’s proposal to amend the rules to permit disability examiners in the State agencies to make fully favorable determinations in certain claims for disability benefits under titles II and XVI of the Social Security Act (Act) without the approval of a medical or psychological consultant on a temporary basis for claims under consideration for Quick Disability Determinations (QDD) or the compassionate allowance initiative.
Approximately 1.3 million people in the United States have Lewy body dementia (LBD). Families who are struggling with LBD face a progressive and disabling disorder that affects thinking, movement and behavior. Due to multiple factors, including limited physician awareness about LBD and complex diagnostic criteria, LBD is highly under-diagnosed, most often misdiagnosed as Alzheimer’s disease (AD).
LBD occurs most often in the elderly, but as LBD awareness grows, physicians are diagnosing people with LBD in their 50’s and early 60’s with increasing frequency. While there is no data available to determine the proportion of people with LBD under the age of 65, research shows that LBD has a typical duration of 5-7 years from the time of diagnosis and that people with LBD reach certain clinical endpoints (like admission to a nursing home or death) about 10 years earlier than people with AD. The Alzheimer’s Association estimates about 5% of people with Alzheimer’s disease are below the age of 65. If the same 5% figure is applied to LBD, it is reasonable to assume the patient population of people with younger onset LBD may be approximately 65,000 cases.
The cognitive changes in LBD feature prominent attention, visual-spatial and executive dysfunction, impairing a person’s abstract or analytical thinking and problem solving. People with LBD lose their ability to make appropriate and safe decisions, and medication monitoring and financial management is usually taken over by a caregiver early in LBD. Dementia, hallucinations, reduced attention and rigidity in LBD can make driving dangerous and people with LBD may be asked to stop driving by their family or physician early in LBD. One of the core symptoms of LBD, fluctuating cognition, is characterized in part by changing levels of alertness and attention. The dementia and cognitive fluctuations impacts job performance quickly in LBD and can lead to the loss of employment or forced early retirement. As the disease progresses, it becomes impossible for the person with LBD to live alone and manage their activities of daily living, like dressing or bathing.
LBD places a tremendous burden on families, from challenges obtaining an accurate diagnosis and severe medication sensitivies, to behavioral problems and the ultimate need for 24/7 care.
Obtaining disability benefits should not be one of the challenges LBD families have to face. To that end, LBDA supports the Social Security’s proposal to temporarily drop the requirement for the approval of a medical or psychological consultant in order to obtain disability benefits. Further, LBDA encourages the Social Security Administration to expand its list of compassionate allowances to include Lewy body dementias and unspecified dementias.
Sincerely,
Angela Herron
President, Board of Directors
For more information on the Compassionate Allowances initiative, please visit www.socialsecurity.gov/compassionateallowances.
