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Federal and State Alzheimer’s Advocacy
 Federal Update
With the passage of the
stimulus plan (American Recovery
and Reinvestment Act), New York
State will get an estimated total of
$24.6 billion over two years.
The FMAP (Federal Medicaid
Assistance Percentage) portion of
the stimulus plan is expected to
provide NYS with $11 billion
which advocates look to the
governor spending for Medicaid
purposes only. The FMAP money
should help deal with the already
high and rising Medicaid costs,
and Governor Paterson was active
with the National Governor’s
Association in seeking Medicaid relief. The governor’s
press release indicated 70% will be retained by the state
with localities getting 30%.
In early March, Governor Paterson, Senate Majority
Leader Malcolm A. Smith, and Assembly Speaker Sheldon
Silver announced that county governments and the City of
New York would receive an estimated total of $2.7 billion
in fiscal relief through FMAP reimbursements
for Medicaid over 27 months. Of this amount,
NYC will receive an estimated $1.9 billion.
Mayor Bloomberg, however, said NYC is owed
$2.1 to $2.8 billion. A spokesman for the state
budget division said NYC was getting a fair and
equitable amount.
Congress added $10 billion for the National
Institutes of Health (NIH) through the American
Recovery and Reinvestment Act. This is the
largest funding increase in NIH in five years. The
Alzheimer’s Association Advocacy and Public
Policy Division in Washington, DC is optimistic
that part of the funding will support research to
cure, prevent, and effectively treat Alzheimer’s
disease. Thousands of advocates had participated
in The Advocacy and Public Policy Division’s outreach
efforts to Congress in support of passage of the NIH
funding. Senators Arlen Specter (R-PA) and Tom Harkin
(D-IA) actively championed the NIH funding increase.
The Alzheimer’s Association 21st Annual Public Policy
Forum was held March 23-25 in Washington, DC. There
were over 500 registrants. The Forum focused on making
Alzheimer’s a state and federal priority and on what actions
need to be taken. In this context, a major event was the
release of the National Alzheimer’s Strategic Plan at a
hearing of the Senate Special Committee on Aging. The
report presented the key conclusions of the Alzheimer’s
Study Group co-chaired by former Speaker of the House
Newt Gingrich and former Senator Bob Kerry, President
of the New School in NYC.
The Alzheimer’s Study Group report found that an
overwhelming crisis is faced that “without a means of
prevention, better treatment, or cure, Alzheimer’s disease is
projected to afflict 10 million Americans from the Baby
Boom generation and contribute cumulative costs of almost
$20 trillion to Medicare and Medicaid between 2010
and 2050.” A key recommendation is the establishment
by 2010 of an Alzheimer’s public/private partnership in
the form of an outcomes-oriented and project focused
Alzheimer’s Solutions Project Office within the federal
government. The office would undertake a major effort
to end Alzheimer’s and bring the scale of what needs to be
done through research to national attention.
At another event, Maria Shriver, a journalist and
member of the Kennedy family, described herself as “a
child of Alzheimer’s” in speaking of her father, Sargent
Shriver, who has Alzheimer’s disease. Ms. Shriver spoke of an effort with which she was involved to bring national
attention to Alzheimer’s. She is the Executive Producer
along with HBO’s Sheila Nevins of HBO’s The Alzheimer’s
Project. This project, initially aired in May, involved four
documentaries devoted to cutting edge science, issues
of care giving, living with the disease, and children and
grandchildren of Alzheimer’s. Those in attendance at the
Forum were privileged to see part of the deeply moving
caregiver broadcast.
On March 25th advocates made Congressional visits
and discussed the Association’s priorities with their senators
and members of the House of Representatives. The federal
legislative priorities for 2009 are as follows:
-
Increasing fiscal year 2010 Alzheimer research funding
at the National Institutes of Health (NIH) by $250
million with a goal of reaching $1 billion per year in
funding in fiscal year 2011.
- Establishing the Alzheimer’s Solutions Project Office
within the federal government backed by an appropriate
scale of investment.
- Phasing out Medicare’s two-year waiting period so
individuals under the age of 65 with Alzheimer’s are
eligible for Medicare immediately after they receive
their determination of eligibility.
State Update
As the state budget deficit ballooned to as much as $16
billion, Governor Paterson, Assembly Speaker Sheldon
Silver, and Senate Majority Leader Malcolm A. Smith
sought ways to deal with the budget gap for fiscal year
2009-2010 (April 1, 2009 – March 31, 2010). At the end
of March, as reported in the New York Times, they presented
an agreement to close the gap through new taxes, federal
stimulus monies, and a slowdown in the growth of health
care spending.
The health care and long term care proposed changes
and reductions in the state budget for 2009-2010 had led
to intense advocacy efforts by providers of service and
advocates alike. The proposal for cutting Medicaid home
care funding by $475 million was met with particular
concern by the Home Care Association and other
organizations as the cuts would have a major impact on
provision of existing home care and New York’s home care
safety net. Our NYC Chapter had heightened concerns
for people with Alzheimer’s with regard to access to and availability of home and community and residential care.
In the final budget proposal, the home care cuts were
substantially rejected.
NYC advocates and our Chapter participated with
advocates in expressing concerns regarding Governor
Paterson’s proposal to establish Regional Long Term
Care Assessment Centers throughout the state. While
supportive of the concept, many advocacy groups were
concerned that this would lead to an attempt to restrict
access to and reduce hours of care provided by the New
York City Medicaid personal care/home care program,
by far the largest program. These actions could lead to
institutionalization of people with Alzheimer’s who would
otherwise be able to remain at home, often at less cost.
New York State has long sought to reduce the costs
of the New York City personal care/home care program
that serves some 47,000 people, half of whom suffer from
dementia. The State was seeking to deal with disparities in
hours of personal care among New York City boroughs for
people with the same diagnosis and between the New York
City program and upstate, as upstate has vastly less personal
care available. Our concern in part was that disparities
can result from a number of factors. Older caregivers can
generally provide less care than their younger counterparts.
Activities of daily living (bathing, feeding, and dressing)
will differ depending upon the stage of the disease.
Trained personnel will be required as well as standards and
appropriate assessment tools. We are concerned as well
that hours of personal care are not reduced to the lowest
common denominator.
The final budget calls for a demonstration program to
be set up involving two sites one of which will be in one
New York City borough and the other in another region
of the state consisting of one or more contiguous counties.
The assessment centers will take over the role of the local
department of social services currently assessing the long
term care needs of clients and authorizing services. The
demonstration will apply to new applicants applying in these
areas after 1/1/2010. The development of the assessment
centers will be closely followed by our NYC Chapter and
concerned advocacy groups and organizations.
As one of its legislative agenda priorities for 2009,
The Coalition of New York State Alzheimer’s Association
Chapters sought restoration of funding for the Alzheimer’s
Coordinating Council and Alzheimer’s programs enabling
Chapters to continue to provide caregiver supports and community based care, thereby delaying premature nursing
home placement.
The final state budget included funding for the
Coalition Chapters for fiscal year 2009-10 as follows:
$274,000 for the Alzheimer’s Community Assistance
Program (AlzCap); $246,000 for Education and Outreach; $75,000 and $150,000 reappropriated from previous years
for the Alzheimer’s Coordinating Council.
NO COMPUTER?
Here’s How To Reach Your Elected Officials
 For those of you who choose not to communicate via e-mail or do not know your State
Assemblyperson or State Senator, there are ways you can reach them to advocate or to express
your concerns on issues.
To advocate to a member of the Assembly, call 518-455-4000 and ask to be connected
to the general switchboard. Tell the person who answers that you are trying to identify your
representative. Once you give your zip code, you will be transferred to your Assemblyperson’s
office. You may have more than one possibility. Ask to be connected to one of them
and that office will guide you.
To identify and call your State Senator, call 518-455-2800. The Senate operator will ask for
your zip code in order to identify your State Senator. This operator will provide the telephone
number or connect you directly to the State Senator’s office.
If you want to write your Assemblyperson, send the letter to:
NYS Assembly
Albany, NY 12248
You can write to your State Senator at:
NYS Senate
Albany, NY 12247
Another option for identifying your elected officials is to call the League of Women Voters
of the City of New York at 212-725-3541. Once you provide your address, they will identify
your representative.
The following are addresses for writing to Governor Paterson, Mayor Bloomberg, and New
York Senators Schumer and Gillibrand:
Honorable David Paterson, Governor of New York
Executive Chamber
State Capitol
Albany, New York 12224
Honorable Michael R. Bloomberg
Mayor of the City of New York
City Hall
New York, NY 10007
Honorable Charles E. Schumer
United States Senate
Washington, DC 20510
Honorable Kirsten E. Gillibrand
United States Senate
Washington, DC 20510
This is my last Public Policy column for the newsletter. After 17 years I will be retiring from the Chapter, and I want to wish you all my best in the time to come.
— Ann Berson, MUP
Vice President,
Director of Public Policy
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