Wednesday, October 23, 2013

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
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

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
iii Coalition ( or 571-383- 9916) or Sara Weir
from the National Down Syndrome Society ( or 202-465-3222)
with questions or for additional information.


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
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
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
R. Scott Turner, MD, PhD (Georgetown University Memory Disorders Program*)
USF Health Byrd Alzheimer's Institute
Volunteers of America
Washington University School of Medicine, Department of Neurology (St. Louis,
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.

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

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