Memory Day Advocacy Training

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Memory Day Advocacy Training Carroll
Rodriguez Public Policy Director
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(No Transcript)
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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
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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
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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

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Economic Value of Informal Caregiving in the US
Source PeterArno, Economic Value of Informal
Caregiving, presented Am Assoc of Geriatric
Psychiatry, 2002
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Caregiving at All Ages
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Missouri Legislature 96th General Assembly
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House of Representatives
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Senate
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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

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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

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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
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How to talk to your legislator .and have them
listen
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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

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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

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2010 Public Policy Priorities

• Alzheimers State Plan Task Force
• Alzheimers Service Grants

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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
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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
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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
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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

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Increase the individual grant awards for the
Alzheimers Disease and Related Disorders
Research Program SB268
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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

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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

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Questions?
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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.

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• 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 .

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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.

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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.

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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.

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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

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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.