Existing Caregiver Task Forces

A Presentation to the California Task Force on Family Caregiving

California Task Force on Family Caregiving

tffc.usc.edu

Agenda1. Exemplary Task Forces

• Alabama

• Delaware

• Idaho

• Maryland

• Mississippi

• New Mexico

2. Other Task Forces• Virginia

• Specific task forces

Exemplary Task Forces

DelawareFamily Caregiving Task Force

Summary FactsFamily Caregiving Task Force

Years Convened 2014 - 2015

Final report Yes, “Caregiver Support Blueprint for Delaware: A report to the Delaware general assembly”

Website No

Social media No

Were state best practices identified? No

Advocacy work Listening sessions, recommendations to legislature

Work regarding availability of services None, but noted that the Delaware Aging Disability Resource Center (ADRC) does this

Why is it noteworthy? • Developed recommendations for the legislature• Collected testimony from caregivers through

listening sessions• Recommendations became the basis for the CARE

Act (SB 52) signed on August 3, 2016

Establishment

Delaware’s Family Caregiving Task Force was established by HCR 57 in

2014 to “study and make findings and recommendation regarding the

support necessary for family caregivers assisting older persons and

adults with disabilities.”

Decision-Making Process• Co-Chairs =

o Lisa Bond Deputy Director, Delaware Division of Services for Aging

and Adults with Physical Disabilities

o Jeanne Nutter, Ph.D. AARP Lead Caregiving Volunteer

• Monthly meetings

• Work groups

• Review of existing materialo Guide to Services for Older Delawareans and Persons

with Disabilitieso 2014 AARP Caregiving Survey

• 6 Listening Sessions

Final Report• Included

oBackground information

o Testimony results

o Existing actions

oAddendum with resources

• Recommendationso Legislative

oBudgetary

oPolicy/Program

Participating Organizations

AARP Delaware Delaware House of Representatives

Alzheimer’s Association Delaware Valley Chapter

Delaware State Chamber of Commerce

Brandywine Village Network of Jewish Family Services of Delaware

Delaware State Senate, Bethany Hall-Long

Delaware Aging Network Developmental Disabilities Council

Delaware Association of Home and Community Care

Easter Seals Delaware

Delaware Association of Rehabilitation Facilities

State Council for Persons with Disabilities

Delaware Division of Services for Aging and Adults with Physical Disabilities

United Way Delaware

Delaware Healthcare Association Community Members: Ana Figueras, Ken Bock, Yvonne Gordon, Nancy Kinsella and Lawondale Parker

CARE (Caregiver Advise, Record, Enable) Act

• Requires Hospitals to

o Include caregiver information in EHR

oNotify designated caregivers of discharge plans

o Educate and train caregivers on aftercare tasks contained in the discharge plan

HawaiiThe Legislative Family Caregivers Working Group

Summary Facts

The Legislative Family Caregivers Working Group

Years Convened 2014 - 2016

Final report Yes, “Report of the Legislative Family Caregivers Working Group”

Website No

Social media No

Were state best practices identified? No

Advocacy work Wrote a report on information briefings

Work regarding availability of services Identified in report

Why is it noteworthy? • Convened two times• Only second task force made recommendations

Establishment

The Legislative Family Caregivers Working Group was established by HCR 78

(2014) “to examine and assess issues contained in Senate Bill No. 2264.”

The Legislative Family Caregivers Working Group was again convened by

SCR 107 (2015) “to examine and assess issues contained in SB 296.”

Decision-Making Process• 8 meetings

• Current hospital discharge practices• Federal rules regarding patient

discharge• Legislation in other states• Hospital accreditation requirements

• Consensus decision making

• 5 informational briefings

• Public hearing

• Supported by the Legislative Reference Bureau

Final Report• Included

• Current procedures• Existing resources• Informational briefings content• Comparison of SB 296 to CARE Acts• Recommendations• Points of General Consensus

• Recommendation to “take no action at this time to mandate hospitals to provide caregiver training” but to consider funding for further studies and organizations to support at-risk population with post-hospital care (2014)

• “supports funding of a comprehensive range of services and programs for kupuna and caregivers” (2015)

• “also supports serious consideration of legislation to require hospitals to offer patients the opportunity to identify a caregiver; involve patients and caregiver sin the patient discharge planning process; and prepare caregivers for post-discharge aftercare.” (2015)

IdahoIdaho Family Caregiver Task Force

Summary FactsIdaho Family Caregiver Task Force

Years Convened 2015 (6 months)

Final report Yes, “Caregivers in Idaho: A report from the Idaho Family Caregiver Task Force and the Idaho Caregiver Alliance”

Website No

Social media No

Were state best practices identified? No

Advocacy work recommendations to legislature

Work regarding availability of services None, but included in recommendations

Why is it noteworthy? • Layout of the final report• Included list of caregiver concerns• Included data sources (referred to Delaware and

Mississippi Blueprints)

Establishment

The Idaho Family Caregiver Task Force began as the Idaho Lifespan

Respite Coalition, whose mission was “to advance the well-being of

caregivers by promoting collaboration that improves access to quality,

responsive lifespan respite care across the state.” The task force was

official recognized by HCR 24.

Decision-Making Process

• ExaminedoCurrent policy initiatives

oAvailable information/research

• Categorized member concerns

• Discussion on creation of a network

• Call themselves “Idaho Caregiver Alliance”

Final Report• Goal: to serve as the

foundation and guide for the creation of an Idaho State Family Caregiver Plan

• IncludesoBackground information

o Existing opportunities for partnership

oRecommendations (priorities) followed by “Action Steps”

oCaregiver concerns

MarylandTask Force on Family Caregiving and Long-Term Supports

Summary Facts

Task Force on Family Caregiving and Long-Term Supports

Years Convened 2015 - 2016

Final report Yes, “2016 Final Report”

Website No

Social media No

Were state best practices identified? No

Advocacy work recommendations to legislature

Work regarding availability of services None, but included in recommendations

Why is it noteworthy? • Final report submitted to legislature

Establishment

Maryland’s Task Force on Family Caregiving and Long-Term Supports was

formed by SB 297, Ch 155 to “identify those policies, programs, and resources

currently available to [caregivers], and also look for innovative and creative

means to support [caregivers] as they provide in-home care and assistance to

elderly adults.”

TASK FORCE ON FAMILY CAREGIVING & LONG-TERM SUPPORTS. (2017). Retrieved May 12, 2017, from http://msa.maryland.gov/msa/mdmanual/26excom/defunct/html/14familycare.html

Decision-Making Process

• Co-chairs• Delores G. Kelley (chosen by Senate

President)

• Angela M. Angel (chosen by House Speaker)

• Received testimony• Speakers

• Staff = AARP Maryland

• 8 public meetings

Final Report• Included

• Background (national and Maryland)• Summary of issue• Recommendations

• Recommendations• Telemedicine• Medicaid community-based waivers• Transportation needs• Mental health of caregivers• Respite care• Adult medical daycare• Assistive devices• Maryland Caregivers Support Coordinating Council

MississippiMississippi Caregivers Task Force

Summary Facts

Mississippi Caregivers Task Force

Years Convened 2014

Final report Yes, “The Caregiver Report and Blueprint”

Website No

Social media Yes – Facebook “Mississippi Caregivers Task Force SCR 561”

Were state best practices identified? No

Advocacy work Facebook group

Work regarding availability of services Facebook group

Why is it noteworthy? • Facebook group• Caregiver Act (SB 2108)

Establishment

The Mississippi Caregivers Task Force was established as part of the 2014

Caregiving Resolution (SB 561) with the mission to “study issues relating to

family caregivers and long-term care services.”

Facebook Group

• ContentoPolicy needs

oAvailable resources

oNew policy

oResearch

CARE (Caregiver Advise, Record, Enable) Act (SB 2108)

• Requires Hospitals to

o Include caregiver information in EHR

oNotify designated caregivers of discharge plans

o Educate and train caregivers on aftercare tasks contained in the discharge plan

New MexicoFamily Caregiver Task Force

Summary Facts

Family Caregiver Task Force

Years Convened 2014 - 2015

Final report Yes, “New Mexico State Plan for Family Caregivers”

Website No

Social media No

Were state best practices identified? Yes

Advocacy work Final report

Work regarding availability of services Public input forums, listening sessions, surveys

Why is it noteworthy? • Included over 50 members• Collected their own data

Establishment

New Mexico’s Family Caregiver Task Force was established by HJM 4 in

2014 to “create a state plan for addressing the challenges faced by

family caregivers.”

Decision-Making Process• 50 representatives

• 7 meetings

• Outreach eventsoALTSD website

oCaregiver surveys

oCaregiver forums (3)

oALTSD listening sessions (4)

• AARP New MexicooCaregiving survey

• 5 work groups

Overarching Principles

Address the rural and frontier nature of cultural traditions

Respect and incorporate ethnic and cultural traditions

Recognize and address the high rate of poverty in the state

Ensure that recommendations are actionable

Final Report• Included

o Processo Backgroundo Current supportso Recommendations (goals and strategies)

• 7 Main Goals1. Ensure that family caregivers access the resources they need2. Ensure that family caregivers are properly trained3. Limit future caregiver burden4. Ensure that family caregivers are supported5. Make family caregiving easier through coordination of care6. Ensure support for family caregivers who work7. Ensure that family caregivers access respite

Other Caregiving Task Forces

VirginiaJoint subcommittee to study issues related to family caregiving and long-term care supports and services

Establishment

Currently, resolution HJ 680 has been filed to establish a “joint

subcommittee to study issues related to family caregiving and long-term

care supports and services.”

Other states have more specific task forces

Task Forces That Include Caregiving

State Task Force

Colorado Respite Care Task Force

Florida Purple Ribbon Task Force (PRTF)

Georgia Alzheimer’s Disease Task Force

Illinois Illinois Task Force on Grandparents Raising Grandchildren

Iowa Direct Care Worker Task Force

Louisiana Committee on Family Caregiving

Maine Medical Marijuana Caregiver Task Force

Missouri Missouri Alzheimer’s State Plan Task Force

State Task Force

Nebraska Aging Nebraskans Task Force

Nevada Alzheimer’s Disease (TFAD)

New Jersey (proposed) Caregivers Task Force

Oklahoma Caregiver Insurance Task Force

Oregon Task Force on the Future Services to Seniors and People with Disabilities

Utah State Plan for Alzheimer’s Disease and Related Dementias

Washington Long-Term Care Task Force

Wisconson Speaker’s Task Force on Alzheimer’s and Dementia

Questions?

References

• Caregiver Support Blueprint for Delaware: available at http://dhss.delaware.gov/dsaapd/files/caregiver_support_blueprint.pdf

• (Hawaii) Report of the Legislative Family Caregivers Working Group: available at http://lrbhawaii.org/reports/legrpts/lrb/2016/famcarewrkgrp.pdf

• Caregivers in Idaho: available at http://javaidaho.org/wp-content/uploads/2016/06/Caregivers-in-Idaho_Final-Report-2016.pdf

• (Maryland) 2016 Final Report: available at http://dlslibrary.state.md.us/publications/nonmd/sb297ch155_2015.pdf

• New Mexico State Plan for Family Caregivers: available at http://www.nmaging.state.nm.us/uploads/FileLinks/93d89f60b10b4732be44e6c31f403060/New_Mexico_State_Plan_for_Family_Caregivers___final.pdf