Memory Day Advocacy Training Carroll Rodriguez Public Policy Director

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3 A few facts to know about Alzheimer’s in Missouri 110,000 Missourians with Alzheimer’s 110,000 Missourians with Alzheimer’s 130,000 by ,000 by ,000 Unpaid caregivers 200,000 Unpaid caregivers $2.6 billion Value of unpaid caregiving $2.6 billion Value of unpaid caregiving 2010 Alzheimer’s 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 Alzheimer’s Disease Facts and Figures 2010

5 Memory Day 10:30 to noon - arrive at the Capitol 11:00 to noon – legislative visits 12:00 to 12:30 - ceremony, Capitol rotunda Leadership awards Guest speakers 12:30 to 2:30 - legislative visits 12:30 to 2:00 – box lunches, 3 rd floor rotunda 2:15 to 2:45 – cookie reception and debrief, 3 rd floor rotunda 2:30 – 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 96 th 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 Alzheimer’s 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 It’s all about the budget Saving dollars / cutting costs Value of state’s investment Support for public / private partnerships Competition for funding

13 House Appropriations-Health, Mental Health, and Social Services RepresentativePartyDistrict Tom FlaniganRep.127: Jasper Donna LichteneggerRep.157: Cape Girardeau, Perry Sue AllenRep.092: STL Bert AtkinsDem.075: STL Shalonn CurlsDem.041: KC, Jackson Paul CurtmanRep.105: Jefferson, Franklin Rory EllingerDem.072: STL Diane FranklinRep.155: Morgan, Miller, Camden Jeff GrisamoreRep.047:Jackson Jeane KirktonDem.091: STL Bill WhiteRep.129: Japer, Newton Anne ZerrRep.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 Alzheimer’s 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

17 Alzheimer’s State Plan Task Force Alzheimer’s Service Grants 2010 Public Policy Priorities

18 Alzheimer’s 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 Alzheimer’s State Plan Task Force Report Delivered to Governor Nixon November 2010  Overview of Alzheimer’s and related disorders  Information on Missouri services and resources  5 recommendations

20 Access 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 shouldn’t have to fight for.” Daughter if individual with younger-onset Alzheimer’s Promote access to statewide expert diagnostic services that can lead to early intervention and support

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

22 Services and Support  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 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 Alzheimer’s or related disorders and their caregivers

23 Deliver Improved Dementia Care  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 Ensure a sufficient, dementia conscious, quality workforce at all levels of the care continuum

24 Missouri as a Leader in Alzheimer Research  Advocate for restoration of state funding for MO Alzheimer’s 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 Maintain Missouri’s status as a leader in Alzheimer’s disease and related disorders research

25 Memory Day Ask  Share the Alzheimer’s 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: 1.Maintain appropriations for Alzheimer’s Service Grants that provide respite care assistance to families 2.Support legislation that will increase the individual grant awards through Alzheimer’s Research and Related Disorders Program

26 Alzheimer’s Service Grants  More than 110,000 individuals in Missouri have Alzheimer’s 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 Alzheimer’s 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 Alzheimer’s Association  2010 funding cut by 70%

28 Memory Day Ask 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 Maintain funding for Alzheimer’s Service Grants, a $150,000 appropriation in the budget for Health and Senior Services

29 House Appropriations-Health, Mental Health, and Social Services RepresentativePartyDistrict Tom FlaniganRep.127: Jasper Donna LichteneggerRep.157: Cape Girardeau, Perry Sue AllenRep.092: STL Bert AtkinsDem.075: STL Shalonn CurlsDem.041: KC, Jackson Paul CurtmanRep.105: Jefferson, Franklin Rory EllingerDem.072: STL Diane FranklinRep.155: Morgan, Miller, Camden Jeff GrisamoreRep.047:Jackson Jeane KirktonDem.091: STL Bill WhiteRep.129: Japer, Newton Anne ZerrRep.018: St. Charles

30 House Budget Committee RepresentativePartyDistrict Rick StreamRep.094: STL Sue AllenRep.092:STL Chris CarterDem.061: STL City Sally FaithRep.015 St. Charles Marsha HaefnerRep.100: STL Shelley KeeneyRep. 156:Wayne, Bollinger, Madison Jeane KirktonDem.091: STL Genise MontecilloDem.066 STL, STL City Jamilah NasheedDem.060: STL City Mark ParkisonRep.016: St. Charles Dwight ScharnhorstRep.093 STL Dave SchatzRep 111:Crawford, Franklin, Gasconade

31 Senate Appropriations SenatorPartyDistrict Kurt SchaferRep.019: Boone, Randolph Scott RuppRep.002: Lincoln, St. Charles Dan BrownRep.016: Phelps, Pulaski Will KrausRep.008: Jackson Jim LembkeDem.001: STL county/city David PearceRep. 031: Bates, Cass, Johnson, Vernon Rob SchaafRep.034: Buchanan, Platte Timothy GreenDem013: STL County Jolie JustusDem.010: Jackson

32 Key Players  House Appropriations for Health, Mental Health, and Social Services  House Budget Committee  Senate Appropriations Maintain funding for Alzheimer’s Service Grants, a $150,000 appropriation in the budget for Health and Senior Services

33 Increase the individual grant awards for the Alzheimer’s Disease and Related Disorders Research Program SB268

34 Alzheimer’s 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 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 Alzheimer’s Disease and Related Disorders Research Program is a key recommendation of the Alzheimer’s State Plan Task Force  This change will position the program for positive results when funding is restored, hopefully in 2012 Support SB268 that increases the individual research grant awards from $30,000 to $50,000 for the Alzheimer’s Disease and Related Disorders Research Program

36 Questions?

37 Alzheimer’s State Plan Task Force S: I was a supporter of the Alzheimer’s 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 Alzheimer’s Service Grants that fund respite assistance for families and for SB286 that increases the individual grant awards for the Alzheimer’s Disease and Related Disorders Research Program.

38 S: Is their funding in the budget for the Alzheimer’s 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 Alzheimer’s Service Grants S: You are telling me Alzheimer’s 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, Alzheimer’s 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 Alzheimer’s 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, Alzheimer’s 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. Alzheimer’s Service Grants are a good investment for the state. Last year, more than 25,000 individuals benefited from programs and services funded with Alzheimer’s Service Grants.

41 Alzheimer’s Service Grants S: I support the good work of the Alzheimer’s Association but I don’t serve on an appropriations committee. Sorry, I don’t 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 ( s, 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 8:00 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 Alzheimer’s. 12:30 – 2:30 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. 5–5:30 p.m. – Arrive at home destinations.