Memory Day Advocacy Training
Carroll RodriguezPublic Policy Director
2
3
A few facts to know about Alzheimer’s in Missouri
110,000
Missourians with Alzheimer’s
130,000by 2025
200,000Unpaid
caregivers$2.6
billion Value of unpaid
caregiving
2010 Alzheimer’s DiseaseFacts 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 rotundaLeadership awardsGuest speakers
12:30 to 2:30 - legislative visits
12:30 to 2:00 – box lunches, 3rd floor rotunda
2:15 to 2:45 – cookie reception and debrief, 3rd 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
0
50
100
150
200
250
300
Family Caregiving Formal Home Health Care
Nursing Home Care
Billions of dollars
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 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
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. 047:Jackson
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 theMissouri Coalition of Alzheimer’ Association Chapters110,000 individuals in Missouri with Alzheimer’s
Discuss the issue3 minutes3 points 1 page summary
16
Visiting with your legislator
Share your personal storiesLet 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
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 programsExpanded 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
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. 047:Jackson
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. 092:STL
Chris Carter Dem. 061: STL City
Sally Faith Rep. 015 St. Charles
Marsha Haefner Rep. 100: STL
Shelley Keeney Rep. 156:Wayne, 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 111:Crawford, 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
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 (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
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.
Top Related