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Memory Day Advocacy Training

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Title: Memory Day Advocacy Training


1
Memory Day Advocacy Training Carroll
Rodriguez Public Policy Director
2
(No Transcript)
3
A few facts to know about Alzheimers in Missouri
110,000 Missourians with Alzheimers
130,000 by 2025
200,000 Unpaid caregivers
2.6 billion Value of unpaid caregiving
2010 Alzheimers Disease Facts and Figures
4
Missouri Statistics
  • People with dementia
  • 110,000
  • 130,000 by 2025
  • Caregivers
  • Unpaid family caregivers
  • 202,662
  • Economic value of unpaid care
  • 2,654,097,424

Alzheimers Disease Facts and Figures 2010
5
Memory Day
  • 1030 to noon - arrive at the Capitol
  • 1100 to noon legislative visits
  • 1200 to 1230 - ceremony, Capitol rotunda
  • Leadership awards
  • Guest speakers
  • 1230 to 230 - legislative visits
  • 1230 to 200 box lunches, 3rd floor rotunda
  • 215 to 245 cookie reception and debrief, 3rd
    floor rotunda
  • 230 depart for home

6
Economic Value of Informal Caregiving in the US
Source PeterArno, Economic Value of Informal
Caregiving, presented Am Assoc of Geriatric
Psychiatry, 2002
7
Caregiving at All Ages
8
Missouri Legislature 96th General Assembly
9
House of Representatives
10
Senate
11
Missouri(rework) budget crisis
  • Last year
  • 793 million revenue shortfall resulting in cuts
    to hundreds of state jobs as well as programs and
    services
  • Alzheimers Service Grants were cut 13 in the
    fall and another 25 over the last several weeks
  • This year
  • 7.2 billion budget request that is based on a
    slight revenue increase
  • To date, state revenue is down by more than 7
  • January alone saw a 22 decline in revenue

12
What does this mean to legislators
  • Its all about the budget
  • Saving dollars / cutting costs
  • Value of states investment
  • Support for public / private partnerships
  • Competition for funding

13
House Appropriations-Health, Mental Health, and
Social Services
Representative Party District
Tom Flanigan Rep. 127 Jasper
Donna Lichtenegger Rep. 157 Cape Girardeau, Perry
Sue Allen Rep. 092 STL
Bert Atkins Dem. 075 STL
Shalonn Curls Dem. 041 KC, Jackson
Paul Curtman Rep. 105 Jefferson, Franklin
Rory Ellinger Dem. 072 STL
Diane Franklin Rep. 155 Morgan, Miller, Camden
Jeff Grisamore Rep. 047Jackson
Jeane Kirkton Dem. 091 STL
Bill White Rep. 129 Japer, Newton
Anne Zerr Rep. 018 St. Charles
14
How to talk to your legislator .and have them
listen
15
Visiting with your legislator
  • State your name, where you are from, and that you
    are a constituent
  • You are speaking today on behalf of the
  • Missouri Coalition of Alzheimer Association
    Chapters
  • 110,000 individuals in Missouri with Alzheimers
  • Discuss the issue
  • 3 minutes
  • 3 points
  • 1 page summary

16
Visiting with your legislator
  • Share your personal stories
  • Let your legislator know if you have benefited
    from program as respite assistance, care
    consultation, or early stage education classes
  • Close by asking for support
  • Refer questions back to the chapter office
  • Follow up with a thank you note or email

17
2010 Public Policy Priorities
  • Alzheimers State Plan Task Force
  • Alzheimers Service Grants

18
Alzheimers State Plan Task Force
  • Task force
  • 19 members including a person with early memory
    loss, caregiver, elected officials, department
    directors, professionals from diverse disciplines
  • Public Input
  • 5 community forums attended by over 400 people

19
Alzheimers State Plan Task Force Report
  • Delivered to Governor Nixon November 2010
  • Overview of Alzheimers and related disorders
  • Information on Missouri services and resources
  • 5 recommendations

20
Access to early Intervention and Support
Promote access to statewide expert diagnostic
services that can lead to early intervention and
support
  • Education of health professionals
  • Public awareness campaign
  • Pilot project on early detection (AD8,
    Administration on Aging grant)
  • Initiate partnerships for the development of
    endowed residency and geriatric fellowships
  • My mother is a fighter and she had to fight to
    even get a diagnosis. This is something you
    shouldnt have to fight for. Daughter if
    individual with younger-onset Alzheimers

21
Road Map for Care and Support
Create a Road Map of care and support that
provides quality information on services across
the continuum from early diagnosis to end of life
  • Evaluate current statewide databases for
    inclusion of dementia related resources
  • Create a Road Map including existing community
    organizations such as the Alzheimers Association
    and Area Agencies on Aging
  • A person needs to be a lawyer to figure out and
    understand all these services. caregiver

22
Services and Support
Provide a wide array of community and home based
services that may offer more cost-effective
options for the rapidly increasing number of
Missourians with Alzheimers or related disorders
and their caregivers
  • Examine MoHealthNet for gaps in services
  • Advocate for expanded respite
  • Educate the community on long-term care insurance
    and CLASS Act
  • Seek grants to expand access to home and
    community services
  • This disease costs more than most have ever had
    to pay for anything in their life. Caregiver

23
Deliver Improved Dementia Care
Ensure a sufficient, dementia conscious, quality
workforce at all levels of the care continuum
  • Evaluate and make recommendations to strengthen
    delivery of quality dementia services across the
    continuum
  • Advocate for including accredited dementia
    training for career ladder workforce
  • First Responder training
  • Hospital dementia specialists pilot
  • We have been bounced around to many nursing
    homes because staff did not understand our
    needs. Caregiver

24
Missouri as a Leader in Alzheimer Research
Maintain Missouris status as a leader in
Alzheimers disease and related disorders
research
  • Advocate for restoration of state funding for MO
    Alzheimers Disease and Related Disorders Program
  • Partner with academic institutions across the
    state to develop a research summit to foster
    scientific collaboration and disseminate research
    information to the general public
  • We need more research money and we need to cure
    this disease soon before it plagues my entire
    family. Caregiver

25
Memory Day Ask
  • Share the Alzheimers State Plan Task Force
    Report with legislators
  • Inform legislators that the Task Force will be
    implementing Task Force recommendations over the
    next two years
  • Immediate action is requested on 2
    recommendations
  • Maintain appropriations for Alzheimers Service
    Grants that provide respite care assistance to
    families
  • Support legislation that will increase the
    individual grant awards through Alzheimers
    Research and Related Disorders Program

26
Alzheimers Service Grants
  • More than 110,000 individuals in Missouri have
    Alzheimers or a related dementia
  • 130,000 by 2025
  • 70 receive care at home because of unpaid
    support from families
  • 2.6 billion is the dollar value attributed to
    informal family care in Missouri (2010)
  • Families can not do it alone

27
Alzheimers Service Grant funding
  • Established in 1989 to support respite
    assistance programs
  • Expanded to fund services for people with early
    stage dementia, care consultation, education,
    safety services
  • Implemented statewide by the Alzheimers
    Association
  • 2010 funding cut by 70

28
Memory Day Ask
Maintain funding for Alzheimers Service Grants,
a 150,000 appropriation in the budget for Health
and Senior Services
  • Key messages
  • Funding is for respite care assistance programs
  • 500 annually to help families take a much needed
    break
  • Available across the state
  • Gives families flexibility to best address the
    individuals needs
  • Research shows that support services as respite
    assistance delays nursing home placement by as
    much as a year potential cost savings of
    millions for Missouri

29
House Appropriations-Health, Mental Health, and
Social Services
Representative Party District
Tom Flanigan Rep. 127 Jasper
Donna Lichtenegger Rep. 157 Cape Girardeau, Perry
Sue Allen Rep. 092 STL
Bert Atkins Dem. 075 STL
Shalonn Curls Dem. 041 KC, Jackson
Paul Curtman Rep. 105 Jefferson, Franklin
Rory Ellinger Dem. 072 STL
Diane Franklin Rep. 155 Morgan, Miller, Camden
Jeff Grisamore Rep. 047Jackson
Jeane Kirkton Dem. 091 STL
Bill White Rep. 129 Japer, Newton
Anne Zerr Rep. 018 St. Charles
30
House Budget Committee
Representative Party District
Rick Stream Rep. 094 STL
Sue Allen Rep. 092STL
Chris Carter Dem. 061 STL City
Sally Faith Rep. 015 St. Charles
Marsha Haefner Rep. 100 STL
Shelley Keeney Rep. 156Wayne, Bollinger, Madison
Jeane Kirkton Dem. 091 STL
Genise Montecillo Dem. 066 STL, STL City
Jamilah Nasheed Dem. 060 STL City
Mark Parkison Rep. 016 St. Charles
Dwight Scharnhorst Rep. 093 STL
Dave Schatz Rep 111Crawford, Franklin, Gasconade
31
Senate Appropriations
Senator Party District
Kurt Schafer Rep. 019 Boone, Randolph
Scott Rupp Rep. 002 Lincoln, St. Charles
Dan Brown Rep. 016 Phelps, Pulaski
Will Kraus Rep. 008 Jackson
Jim Lembke Dem. 001 STL county/city
David Pearce Rep. 031 Bates, Cass, Johnson, Vernon
Rob Schaaf Rep. 034 Buchanan, Platte
Timothy Green Dem 013 STL County
Jolie Justus Dem. 010 Jackson
32
Key Players

Maintain funding for Alzheimers Service Grants,
a 150,000 appropriation in the budget for Health
and Senior Services
  • House Appropriations for Health, Mental Health,
    and Social Services
  • House Budget Committee
  • Senate Appropriations

33
Increase the individual grant awards for the
Alzheimers Disease and Related Disorders
Research Program SB268
34
Alzheimers Disease and Related Disorders
Research Program
  • Established in 1987 to advance new research and
    bring new researchers into the field
  • Administered by the Board of Curators, University
    of Missouri
  • Average of 8 programs funded annually
  • Individual grant awards of up to 30,000
  • High return on investment
  • For every dollar invested, more than 10 in
    subsequent funding has come to the state
  • The program has not been funded since 2006

35
Memory Day Ask
Support SB268 that increases the individual
research grant awards from 30,000 to 50,000 for
the Alzheimers Disease and Related Disorders
Research Program
  • Key messages
  • Individual grant awards have been 30,000 since
    1997
  • To attract talented new researchers and
    outstanding research projects, an increase is
    needed
  • Restoration of funding for Alzheimers Disease
    and Related Disorders Research Program is a key
    recommendation of the Alzheimers State Plan Task
    Force
  • This change will position the program for
    positive results when funding is restored,
    hopefully in 2012

36
Questions?
37
Alzheimers State Plan Task Force
  • S I was a supporter of the Alzheimers State
    Plan Task Force. I am pleased to see a report
    has been written. What can I do to help advance
    the recommendations.
  • AA Thank you for your past support. When
    community forums where held across the state,
    families stressed the importance of respite
    assistance to help keep their loved ones at home
    and for research. We are asking you to support
    appropriations for Alzheimers Service Grants
    that fund respite assistance for families and for
    SB286 that increases the individual grant awards
    for the Alzheimers Disease and Related Disorders
    Research Program.

38
  • S Is their funding in the budget for the
    Alzheimers Disease and Related Disorders Program
  • AA Not this year however as the economic
    climate improves, we want to see the dollars
    restored. This is a good investment for our
    state. For each dollar expended on these research
    projects, more than ten dollars in subsequent
    support comes to the statr from national granting
    agencies .

39
Alzheimers Service Grants
  • S You are telling me Alzheimers Service Grants
    can save tax payers money. Please explain that
    to me.
  • AA Senator, Missouri spends more than 100
    million annually to care for persons with
    dementia on Medicaid in nursing homes. We know
    from research when families receive supportive
    services at home nursing home placement is
    delayed by as much as a year. A 470,000
    investment could potentially save Missouri
    millions in Medicaid nursing home costs.
  • Additionally, Alzheimers Service Grants serve
    as the required match for federal funding. Over a
    9 year period, Missouri received more than 2
    million from these federal grants.

40
Alzheimers Service Grants
  • S In these very difficult economic times, every
    organization is feeling the pain of the revenue
    shortfalls in the state. Is 470,000 the same
    amount you have been receiving?
  • AA For the last several years, Alzheimers
    Service Grants were funded at more than 539,000.
    Last fall funding was reduced by 13. The
    request of 470,000 is a 13 reduction from
    previous funding levels.
  • Alzheimers Service Grants are a good investment
    for the state. Last year, more than 25,000
    individuals benefited from programs and services
    funded with Alzheimers Service Grants.

41
Alzheimers Service Grants
  • S I support the good work of the Alzheimers
    Association but I dont serve on an
    appropriations committee. Sorry, I dont think I
    can help.
  • AA Senator we would appreciate it if you would
    talk with Senators that serve on the
    appropriations committee and urge their support
    for this valuable program.
  • We also hope we can count on your support when
    the Department of Health and Senior Services
    budget comes before the full Senate for a vote.

42
When communicating with legislators remember to.
  • Keep it local
  • State legislative officials pay more attention to
    personal communication from constituents than any
    other source
  • Keep it personal
  • Personal forms of communication (e-mails,
    letters, calls, office visits) indicate a greater
    amount of effort
  • Keep it concise
  • The more concise the communication, the more
    likely it is to receive attention
  • No more than 3 minutes 3 points 3 pages
  • Put it in writing
  • Follow up with a letter summarizing your
    discussion and reiterating your position

43
Memory Day Timeline
  • 800 a.m. Motor coaches leave from each of the
    designated departing locations and head to
    Jefferson City. (The van from Cape Girardeau
    leaves at 7 a.m.). Passengers will view a
    training video. Noon Ceremony in the Capitol
    Rotunda to commemorate families and friends
    affected by Alzheimers. 1230 230 p.m.
    Join experienced group leaders in meetings and
    discussions with your state senator and
    representative. Box lunches will be available
    during this time.3 p.m. Transportation departs
    from the Capital. 5530 p.m. Arrive at home
    destinations.
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