LEAD Coalition Urges Swift Action on ABLE Act

from the LEAD Coalition:
Sixty-one LEAD Coalition member organizations and supporters wrote to congressional sponsors of the Achieving a Better Life Experience (ABLE) Act of 2013 (S. 313/H.R.647) encouraging enactment this year. Read the letter.

Today, over five million Americans have Alzheimer’s disease -- and millions more

have vascular, Lewy body or frontotemporal dementia. It is expected that 13

million or more Americans will have Alzheimer’s disease by 2050, barring a major

scientific breakthrough in the near-term. For many individuals and families facing

the enormous financial toll of a typically decade-long battle with Alzheimer’s

disease or a related dementia,

i the ABLE Act will provide an important tool to

avoid impoverishment and dependence on public assistance programs. This is

consistent the intent of the National Alzheimer’s Project Act (Public Law 111-375)

and the resulting National Plan to Address Alzheimer’s Disease Goal 3, Strategy

3.C: Assist Families in Planning for Future Care Needs

ii.

LEAD

Leaders Engaged on Alzheimer’s Disease

The ABLE Act will allow individuals with physical, intellectual or cognitive

disabilities and their families to save their private funds for the future just like

every other American. The ABLE Act builds upon a highly successful taxdeferred

education savings platform to begin addressing the challenges of paying

for quality long-term care services by establishing a new subsection within

Section 529 of the Internal Revenue Code. Individuals with disabilities would be

permitted to establish ABLE accounts into which they and others could make taxdeferred

contributions. ABLE account funds then could be used for essential

expenses including medical and dental care, community-based supports,

assistive technology, housing and transportation. Such qualified expenditures

would supplement, but not supplant, benefits provided through private insurance,

Medicaid, Supplemental Security Income (SSI), the beneficiary’s employment,

and other sources. The legislation also contains Medicaid fraud protection

against abuse and a Medicaid payback provision when the beneficiary passes

away.

Currently, individuals with disabilities often must rely on services through

Medicaid and income supports through SSI both of which impose significant

limitations on the amount of assets they can maintain. Functionally, these limits

impose unwelcome and counter-production barriers to employment, independent

living, and economic self-sufficiency. The ABLE Act frees people with disabilities

to invest in their own future without fear of becoming ineligible for Medicaid and

SSI. Equally important, the legislation will allow family and loved ones of

beneficiaries diagnosed with Alzheimer’s disease or a related dementia to

contribute to accounts that can be used to pay for the diagnosed individual’s

long-term care needs.

 

Please contact Ian Kremer from the Leaders Engaged on Alzheimer’s Disease

(LEAD)

iii Coalition (ikremer@leadcoalition.org or 571-383- 9916) or Sara Weir

from the National Down Syndrome Society (

sweir@ndss.org or 202-465-3222)

with questions or for additional information.

Sincerely,

Abe’s Garden

Alliance for Aging Research

Alzheimers North Carolina

Alzheimer's & Dementia Alliance of Wisconsin

Alzheimer’s Foundation of America

Alzheimer’s Tennessee

American Association for Geriatric Psychiatry

American Association for Long Term Care Nursing

Assisted Living Federation of America

Laura D. Baker, PhD (Wake Forest School of Medicine*)

Banner Alzheimer’s Institute

BrightFocus Alzheimer’s Disease Research

Caregiver Action Network

Cleveland Clinic Foundation

Jeffrey Cummings, MD, ScD (Cleveland Clinic Lou Ruvo Center for Brain

Health*)

Darrell K. Royal Fund for Alzheimer's Research

Rachelle S. Doody, MD, PhD (Baylor College of Medicine*)

Geoffrey Beene Foundation - Alzheimer's Initiative

Georgetown University Medical Center Memory Disorders Program

Gerontological Society of America

Global Coalition on Aging

David Holtzman, MD (Washington University School of Medicine, Department of

Neurology*)

Inspire

Keep Memory Alive

Latino Alzheimer’s and Memory Disorders Alliance

Linked Senior, Inc.

Dave Morgan, PhD (USF Health Byrd Alzheimer's Institute*)

National Alliance for Caregiving

National Caucus and Center on Black Aged, Inc.

National Down Syndrome Society

National Task Group on Intellectual Disabilities and Dementia Practices

New York Academy of Sciences

NYU Langone Comprehensive Center on Brain Aging/NYU Langone Silberstein

Alzheimer’s Institute

NYU Alzheimer's Disease Center

OWL-The Voice of Midlife and Older Women

Piramal Imaging

ResearchersAgainstAlzheimer’s

R. Scott Turner, MD, PhD (Georgetown University Memory Disorders Program*)

USAgainstAlzheimer’s

USF Health Byrd Alzheimer's Institute

Volunteers of America

Washington University School of Medicine, Department of Neurology (St. Louis,

Missouri)

Michael W. Weiner, MD (University of California San Francisco*)

* Affiliations of individual researchers are for identification purposes only and do

not necessarily represent the endorsement of the affiliated institution.

i

http://www.nejm.org/doi/pdf/10.1056/NEJMsa1204629

ii

http://aspe.hhs.gov/daltcp/napa/NatlPlan2013.shtml#strategy3.C

iii

Leaders Engaged on Alzheimer’s Disease (LEAD) is a diverse and growing

coalition of 61 member organizations including patient advocacy and voluntary

health non-profits, philanthropies and foundations, trade and professional

associations, academic research and clinical institutions, and biotechnology and

pharmaceutical companies. The LEAD Coalition works collaboratively to focus

the nation’s strategic attention on Alzheimer’s disease and related disorders and

to accelerate transformational progress in care and support, detection and

diagnosis, and research leading to prevention, effective treatment and eventual

cure. One or more participants may have a financial interest in the subjects

addressed.