Shaping Alzheimer’s
Public Policy in Illinois
• Presenters
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Jen Belkov (Vice President, Public Policy)
Andrew Kretschmar (Manager, Advocacy)
Beverly Rogers (Alzheimer’s Advocate)
Dani Jachino (Alzheimer’s Advocate)
Goals for policy achievement
Mechanics
How and why Advocacy Works
Success and moving forward
Questions & Answers
Why Public Policy and Advocacy are critical to
supporting those affected by Alzheimer’s and
ultimately finding a cure
As Alzheimer’s disease threatens to bankrupt families, businesses and our
healthcare system, now is the time to collectively speak up for the needs
and rights of people with Alzheimer’s and their families with the goal of
persuading Congress and the Illinois General Assembly to address those
needs through legislative action.
2013 Costs of Alzheimer's =
$203 Billion
Why Public Policy and Advocacy are critical to the
health and well-being of those impacted by Alzheimer’s
disease
The private sector has never made the financial commitment to
conduct the core foundation research needed to progress toward
treatments and ultimately toward finding cures for major diseases.
Alzheimer’s is no different. The business sector will begin to
participate once they see profitability – the foundation must be
developed utilizing government resources. Our legislators need to
understand the severity of this disease and the disastrous outcomes
that are on the horizon – if Congress and state governments do not
designate vital resources for Alzheimer’s disease research, our
entire country will pay the price.
*See Handout
Deciding which policies to pursue?
Mission Statement
(proactive)
• Organizationally based
• Does this policy take us
one step further toward:
– A dementia capable state?
– A world without
Alzheimer’s?
Communication
(reactive)
• Need based
– Are constituents
experiencing difficulty with
lack of policy or regulation?
– Are public health officials
witnessing lack of
institutional resources?
– Are professionals in
various sectors lacking the
training to deal with this
disease adequately?
Legislators
support
Association
priorities
Consistent presence
with/and education of
legislators
Association building relationships
Developing a successful
grassroots advocacy program
Find those
with a
passion
Empower
and train
Meet Beverly
and Dani
The lead advocate program is being designed to enhance the Association’s state
government relations efforts through personal contact with targeted members of the
Illinois legislature by building relationships with lawmakers and their staff.
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Each will be a grassroots volunteer
committed to maintaining a greater
level of involvement in the
Association’s policy work at the
state level.
They play a critical role in helping
the Alzheimer’s Association meet
Illinois’ legislative goals, working
directly with chapter staff to
implement Illinois advocacy
activities in the community.
Sample Actions the Association asks Lead
Advocates to take:
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Advocates also help us make the
visits and interactions required in
the strategic plan.
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Send letter of introduction to assigned elected officials
Request to be included in district mailings to
constituents and to receive notices of local
meetings/hearings conducted by member
Participate in district office visits
Attend the annual Illinois Action Summit in Springfield
Track and attend legislators’ town hall meetings and
other open community events
Submit letters-to-the-editor to local media
Post comments on local media and social media
websites
Recruit other constituents from your
neighborhood/legislative district that are interested in
supporting our priorities
Become an advocacy volunteer at one or more of our
Walks to End Alzheimer’s disease
Our work in public policy moves our concern for persons with Alzheimer’s disease and
their families out of our homes and into the capitols of every state, and into the offices of
virtually every state and U.S. Senator and Representative, even into the White House.
The payoff has been phenomenal to date, legislative successes include, but are not
limited to:
• Increases in federal research funds
• Obtained a commitment by Congress to
create a National Alzheimer’s Disease Plan
(NAPA)
• Passed a resolution through the General
Assembly requiring the State to create an
Alzheimer’s disease plan – recent legislation
also compelled the State to update this plan
• Moved legislation through the State House
and Senate to create Alzheimer’s license
plates in Illinois
• Worked with the Illinois Dept. of Public
Health to undertake several years of
surveillance studies to determine the level of
cognitive impairment in Illinois
• Effectively fought to extend Medicaid to
allow access to health care for those eligible
persons diagnosed with younger onset
Alzheimer’s
• Worked collaboratively to amend legislation,
creating the Adult Protective Services Act,
eliminating abuse, fraud and exploitation of
vulnerable patients, including those with
Alzheimer’s disease
• Led the successful fight to establish Dementia
Special Care Unit regulations for nursing homes
• Set minimum dementia care training
requirements for certified nursing assistants in
Illinois
• Passed legislation to establish a State Police
response for missing endangered adults
• Ensured that Alzheimer’s drugs were added to
the state’s Pharmaceutical Assistance Program
• Created the Illinois Alzheimer Legislators Alliance
for members of the Illinois General Assembly
• Repealed the Governor’s veto of funding for the
Illinois Alzheimer’s disease research centers
Why Public Policy and Advocacy are critical to the
prosperity of the Association and its mission:
Elected officials are held accountable by their constituents. As their job
security is solely based on their ability to get voters to re-elect them,
advocates must be vocal in their belief that Alzheimer’s requires their
support and commitment. For this reason, the collective voices of
advocates are more powerful than any PAC or lobbying entity could
ever be.
Each individual voice is critical, but by advocating
together, our voices have the ability to create a
world without Alzheimer’s disease.
Questions & Answers