Federal Update
Whatever changes might lie ahead with the Democrats taking over
Congressional leadership, advocacy efforts on the part of all concerned
with Alzheimer’s disease remain essential. The Alzheimer’s
Association is continuing its intense advocacy efforts and is calling on
Congress to make Alzheimer’s a national priority.
At this point in time, it is important to take note of the priority
actions needed to avert Alzheimer’s becoming a national crisis in
years to come, particularly as large numbers of baby boomers are
afflicted with Alzheimer’s and become eligible for Medicare and in
need of Medicaid funded long term care. Medicare currently spends
$91 billion a year on care for people with Alzheimer’s, and the cost
will double by 2015 to $189 billion. Medicaid spending on
Alzheimer’s nursing home long term care is at least $21 billion a year,
and is expected to rise to $27 billion by 2015. The priority actions
called for by the Alzheimer’s Association are outlined below and
additional information is available at www.alz.org.
Increase support for Alzheimer’s research at the
National Institutes of Health by $60 million.
Make Medicare work for beneficiaries with Alzheimer’s disease
by: adding a targeted chronic care management benefit; including
training for Alzheimer caregivers in the home health benefit; and
eliminating the Medicare two-year waiting period for recipients
of Social Security Disability who have Alzheimer’s disease and
no other health insurance.
Support Alzheimer’s families struggling to provide long term care
by: providing hardship exemptions to new Medicaid asset rules
for persons with dementia; preserving the Medicaid safety net
by rejecting arbitrary caps on federal financial participation and
retaining existing long term care benefits and functional eligibility
requirements.
Support family caregivers by reauthorizing the Older Americans Act
and include authorizing services for individuals with Alzheimer’s
regardless of age and initiating a bipartisan national dialogue.
Support unique, proven Alzheimer programs including the
National Alzheimer’s Call Center ($1 million); Brain Health Initiative
($3.2 million);Alzheimer’s Association Safe Return® ($900,000);
and Alzheimer’s State Matching Grants Program ($12 million).
Raise the profile and priority of Alzheimer’s disease at the Food
and Drug Administration (FDA) by increasing FDA resources
dedicated to making Alzheimer’s a higher priority for drug review
and involving people with Alzheimer’s and their families in the
drug development and review process.
State Updates
The NYC Chapter continues to advocate at the
state and local level for persons with Alzheimer’s,
their families, and other caregivers.
At the City level, for the second year the
Chapter received grant funds for Safe Return
from the Department for the Aging and the City
Council. Under the grant funds, free enrollment
is available to NYC residents in the Alzheimer’s
Association Safe Return program, a nationwide
identification, support, and enrollment program
working at the community level. Safe Return
provides assistance whether a person becomes
lost locally or far from home.Assistance is available
24 hours a day whenever a person is lost or
found. The grant funds also provide for community
outreach and public awareness activities.
As part of the statewide Coalition of New York
State Alzheimer’s Association Chapters, the NYC
Chapter participates in the development of an
annual Legislative Agenda to bring Alzheimer’s
related priority issues to the attention of the
Legislature and participates as well in the annual
advocacy day in Albany. Chapter staff, family
caregivers, and interested persons gathered this
year to visit members of the Assembly and Senate
on March 6th.
Access to and availability of Medicaid long
term care in the home remains of critical importance
to the Alzheimer community. As the
governmental emphasis shifts to provision of
home and community services to enable persons
to remain in their own homes and communities
for as long as possible, it is extremely important
to assure that persons with Alzheimer’s remain
eligible for needed home and community
services and that any attempts to restrict or delay
access to such care are rejected.
Other priority advocacy issues include safe
staffing in residential facilities, dementia training
for health care providers and direct care workers,
family health care decision legislation, and
enhanced funding for Alzheimer’s community
services.
— Ann Berson
Vice President,
Director of Public Policy
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