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Federal and State Alzheimer’s Advocacy
Federal Update
 As reported in the last newsletter, the 2008 funding for
Alzheimer’s research at the National Institutes of Health
(NIH) once again remained basically flat at $640
million. In February 2008, President Bush’s fiscal
year 2009 proposal was sent to Congress. To the disappointment
of all concerned with Alzheimer’s medical
research funding in the race to find a cure for Alzheimer’s,
the president’s proposal for Alzheimer’s research at NIH
again remained flat at approximately $640 million.
As the Alzheimer’s Association has pointed out in its
response to the President’s 2009 budget proposal, for
the sixth year in a row the proposed funding doesn’t even
keep up with medical inflation. In addition, once again the
budget proposal did not include funding for the care
services programs including the Alzheimer’s Disease State
Matching Grants, the 24-hour Helpline, MedicAlert® +
Alzheimer’s Association Safe Return®, and the Centers for
Disease Control Brain Health Initiative. Last year Congress
restored the funding for these programs.
As the Alzheimer’s Association has pointed out in its
response to the President’s 2009 budget proposal, for
the sixth year in a row the proposed funding doesn’t even
keep up with medical inflation. In addition, once again the
budget proposal did not include funding for the care
services programs including the Alzheimer’s Disease State
Matching Grants, the 24-hour Helpline, MedicAlert® +
Alzheimer’s Association Safe Return®, and the Centers for
Disease Control Brain Health Initiative. Last year Congress
restored the funding for these programs.
In subsequent newsletter articles, the efforts to increase
funding for medical research and restore funding for
Alzheimer care programs will be reported as advocacy
efforts unfold across the country.
State Update
In late January, then Governor Spitzer presented his
Executive Budget for 2008-09. Despite having made home
and community services to enable persons to remain in their
own homes and communities a cornerstone of his
long- term care efforts, the budget called for various home
care cuts including cuts to Medicaid program provider
reimbursement in what is known as the trend factor.
Any cuts affecting the New York
City Medicaid personal care/home
care program are of particular
concern to the New York City
Alzheimer’s community. There are
tens of thousands of persons in New
York City with dementia who are able
to remain at home with the care of a
home attendant from the personal
care program. While the very large
role played by unpaid caregivers
in New York State is indicated by the
figures in the federal update, the long
duration of dementia-related
illness and the high costs of private
care often result in a deep dependence
on Medicaid programs and services
in the home and community. The
concern raised by reductions in
Medicaid provider reimbursement is that
they will lead to reductions in care on which people with
Alzheimer’s depend and will lead in certain instances to
premature nursing home placement.
While 80% of the proposed home health care cuts
were rejected, the reductions in Medicaid provider
reimbursement (the trend factor) were adopted in the final
health budget. The effects of the reductions will be
closely monitored going forward by all concerned with
long-term care.
In February, the Coalition of New York State Alzheimer’s
Association Chapters held its annual Advocacy Day
in Albany. Chapter staff members and family caregiver
advocates traveled to Albany for visits with Assembly and
Senate New York City representatives. The visits
provided the opportunity for the deeply dedicated family
members to tell their stories, and the representatives and
aides with whom we met were most responsive. The
visits provided an important opportunity to request
funding for Chapter education and outreach to the
community. With regard to the need for funding for the
Chapters, those with whom we visited were most
supportive, and the Coalition’s funding requests were
approved in the final health budget.
As of March 17, Governor Spitzer’s resignation was effective,
and Lt. Governor David Paterson was sworn in
as Governor. As the Senate Minority Leader prior to
becoming Lt.Governor, he was supportive of the Coalition’s
legislative priorities, and his continued support is looked to
in this difficult fiscal climate.
— Ann Berson, MUP
Vice President,
Director of Public
Policy
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