Memory Day Advocacy Training Carroll Rodriguez Public Policy Director

Memory Day Advocacy Training

Carroll RodriguezPublic Policy Director

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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

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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

Alzheimer’s Disease Facts and Figures 2010

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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

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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

0

50

100

150

200

250

300

Family Caregiving Formal Home Health Care

Nursing Home Care

Billions of dollars

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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 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

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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

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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. 047:Jackson

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 theMissouri Coalition of Alzheimer’ Association Chapters110,000 individuals in Missouri with Alzheimer’s

Discuss the issue3 minutes3 points 1 page summary

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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

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Alzheimer’s State Plan Task Force

Alzheimer’s Service Grants

2010 Public Policy Priorities

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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%

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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

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House Appropriations-Health, Mental Health, and Social Services


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


Bill White Rep. 129: Japer, Newton

Anne Zerr Rep. 018: St. Charles

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House Budget Committee


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


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

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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

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

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Increase the individual grant awards for the

Alzheimer’s Disease and Related Disorders Research Program

SB268

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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

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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

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Questions?

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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.

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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 .

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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.

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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.

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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.

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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

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.

Memory Day Advocacy Training Carroll Rodriguez Public Policy Director

Documents

Transcript of Memory Day Advocacy Training Carroll Rodriguez Public Policy Director