Federal Update
 TAs 2007 drew to a close, the 2008
federal budget still had not been
finalized. In this climate, the
Alzheimer’s Association Advocacy
and Public Policy Division continued
intense efforts to secure
increased funding for Alzheimer’s
research. Advocates throughout the
country played an important role in
these efforts as can be seen from the
information below.
Under the President’s 2008
proposed budget, Alzheimer’s
research was funded at $642 million,
basically flat for the fourth consecutive
year. In November, President
Bush vetoed a bill that included an
additional $30 billion for the National Institutes of Health
(NIH). Of this amount, $16 million would have provided
for increased funding for Alzheimer’s research.
Advocates from all over the U.S. contacted their members
of Congress to urge an override of the President’s veto.
Despite their efforts, the House of Representatives
override vote fell short by two votes.
Subsequent to the failure of the override and while
awaiting a revised Congressional bill that could result in
an amount short of the $30 billion, the Alzheimer’s
Association Advocacy and Public Policy Division undertook
a number of steps to ensure the additional $30 billion
for NIH. These advocacy efforts culminated in a
White House call-in on December 12 and 13. Nearly
3,600 calls were made to the White House urging
President Bush to support the $30 billion including the
$16 million for Alzheimer’s research. In late December,
Congress passed an “omnibus” bill that combined 11
unfinished appropriations bills that the President signed.
NIH received only a 2% increase of $329 million. As a
result, unfortunately, the 2008 funding for Alzheimer’s
research remained essentially flat. Continued funding for
Alzheimer’s care programs, however, was included in the
“omnibus” bill..
On another note, the New York City Chapter worked
with the Alzheimer’s Association to ring in the New Year
with two 15 second animated billboards in Times Square.
For 15 days between December 18 and January 1, the spots appeared once per hour for 18 hours a day at 42nd
Street between 7th and 8th Avenues. Over a million people
passed this location each day.
State Update
The significant role played by unpaid caregivers has
recently been receiving much deserved attention. In this
context, Governor Spitzer designated November as
“Caregivers Month” in New York State. The New York
State Office for the Aging devoted a special edition of its
newsletter in November to caregivers. Also in 2007, the
New York State Family Caregiver Council was established
and charged with the development of recommendations
for the Governor and Legislature that will assist and
support caregivers.
The importance of family caregivers in maintaining
persons with Alzheimer’s in their homes and delaying
premature institutionalization can’t be overestimated.
There are almost half a million persons with Alzheimer’s
disease in New York State and more than two million family
caregivers. Studies have shown that some 70% to 75%
of all persons with Alzheimer’s disease are being cared for
in their homes at little or no cost to New York State.
Our Coalition of New York State Alzheimer’s Chapters
in its annual Legislative Agenda has continued to recognize
the role of informal caregivers. The Coalition is also
cognizant of the very high cost of private care over the
long duration of dementia-related illness that results in a
deep dependence on publicly funded (primarily Medicaid)
programs and services in the home, community and
residential facilities. As such, protecting the Medicaid
Safety Net remains a major priority.
The very high cost of Medicaid to New York State is of
great concern at this time, and the cost of Medicaid-funded
long-term care has become a focus of attention. Our
Coalition will continue to advocate for Medicaid home
care/personal care and other programs that provide
support to caregivers and enable persons with Alzheimer’s
to be maintained at home, often over the long duration of
illness. The Coalition is also supportive of the concept of
family-directed care under the Medicaid Consumer
Directed Personal Assistance Program and will advocate
for ensuring statewide access to this program, which
enables the family to hire and supervise the home care
worker and arrange the care schedule.
— Ann Berson, M.U.P.
Vice President, Director of Public Policy
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