lifespan respite: who, what, why, where and how?

ARCH National Respite Network and Resource Center

Presenter

Jill Kagan, MPHProgram DirectorARCH National Respite Network and Resource [email protected]

2ARCH National Respite Network and Resource Center

Family Caregiving in the US65.7 million unpaid family caregivers

Provide 80% of long-term care in the US.

Valued at over $375 billion a year in uncompensated care, more than was spent on Medicaid in 2007.


Family Caregiving is Lifespan!

Majority of family caregivers caring for someone under age 75 (56%).

28% of family caregivers caring for someone between the ages of 50-75.

28% are caring for someone under age 50, including children

Source: Caregiving in the U.S. 2009. Bethesda, MD: National Alliance for Caregiving and Washington, D.C.: AARP, 2009.


Family Caregiving in [State}

In 2007, at anytime during the year, nearly 1.4 million family caregivers were providing care in [State].

The value of their caregiving is estimated at $[ ] billion annually.

But they cannot do it alone!Source: Gibson, MJ and Houser, A., (2008). Valuing the Invaluable: The Economic Value of Family Caregiving,

2008 Update, AARP Public Policy Institute Issue Brief Insight on the Issues, November, 2008.(Washington, DC: AARP)


What is Respite?For family caregivers who provide ongoing care to

someone with a chronic or disabling condition or for a family facing undue hardship or crisis, respite means:

… planned or emergency care provided to a child or adult with a special need in order to provide temporary relief to the family caregiver of that child or adult.

Lifespan Respite Care Act definitionPL 109-442


Benefits of RespiteImproves family caregiver physical and

emotional health;Improves overall family well-being and

stability;Improves marriages, sibling and other

family relationships;Reduces hospital costs and helps avoid

or delay more costly foster care, nursing home or other out-of-home placements;

Gives care recipient a break, too!7

What is Lifespan Respite??

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Lifespan Respite …not just care or a service, but…..

Lifespan Respite Definition: Coordinated SYSTEMS of accessible,

community-based respite services for all family caregivers regardless of age or special need.

Original Lifespan Respite Programs for Best Practice: OR, OK, WI, and NE designed to improve respite access

Twenty-four (24) New Federal Grantees9

Why Do We Need Lifespan Respite Systems?


Respite: Too Little, Too Late89% of family

caregivers (those 65 million I mentioned earlier) do not receive respite.

Survey did not ask these families why they do not receive respite, but we know from research and experience what the barriers are.


Barriers to RespiteConfusing and

Restrictive Eligibility Criteria

Affordability IssuesLimited ProvidersReluctance to identify

as caregiver or ask for help

Bureaucratic Maze of Funding Streams and Services


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Medicaid Waivers

New Health Care Reform and VA Provisions

National Family Caregiver Support Program

Block Grants (TANF, Maternal and Child Health, Social Services, Children’s Mental Health)

Federal Categorical Funding Streams, such as CAPTA, Family Support, Alzheimer’s Demos

State Respite or Family Caregiver Support Programs

Building Blocks forLifespan Respite


Lifespan Respite is like a QuiltIt weaves together these extremely

important, but fragmented funding streams, disparate and duplicative programs, and silos to form a seamless system that

make barriers invisible to families.


Characteristics of Lifespan Respite Programs

Identify and coordinate existing respite resources/funding/programs at state level

Identify service gaps to help create and monitor new respite services

Connect families to respite services, providers, and payment resources

Recruit and train respite providersPromote public awareness about respite


Best Practices in State Lifespan Respite Systems


Oregon’s Lifespan ProgramState Agency: In 1997, Oregon

Department of Human Services (DHS) charged by state law to develop statewide respite coordination

Relies Heavily on Local Structures to Build Resources: DHS worked directly with 22 local respite networks (LRNs) serving all 36 counties in Oregon

Diverse State Advisory Council brings Lifespan Perspective


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Nebraska’s Lifespan Program

Nebraska Lifespan Respite Services Program created by legislation in 1999Lifespan Respite Network Also has Lifespan Respite Subsidy (respite

payments up to 312% of poverty for families who do not qualify for any existing funding stream)

State Agency: Implemented by Nebraska Department of Health & Human Services (DHHS)


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NE Respite Network More Regional than Local (like in OR)Regional Structure: HHSS contracts

with six (6) regional entities to form the Lifespan Network.


Oklahoma’s Lifespan Program

Oklahoma Respite Resource Network (ORRN) is a statewide partnership of public and private agencies

Partnering State Agencies include: developmental disabilities, mental health, aging, maternal and child health and others


Oklahoma Structure

No local/regional structure

ORRN relies on a statewide resource and referral system (OASIS) through an 800 toll-free number and the web to link families to the program, to respite providers and to training opportunities.


Oklahoma’s Lifespan Program:Consumer-Directed

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Family Caregivers eligible for respite vouchers of $200-400 every three months as long as funds are available.

Encouraged to choose own providers from community/family support network.

By using OASIS, caregivers receive information on other services and supports besides respite.


Moving to National ScaleLifespan Respite Law Signed in 2006Funded for the First Time in 2009 at $2.5 million and again in 2010

Administered by the US Administration on Aging


Federal Lifespan Respite Care ProgramUS Administration on Aging administers competitive state grants for these mandatory uses of the funds:

Development or enhancement of State and local Lifespan Respite systems

Provision of planned or emergency respite for all ages


Lifespan Respite Care Program (con’t)

Training and recruitment of providers/volunteers

Provision of information to caregivers about available respite and support services, and assistance in gaining access to such services


State Lead AgencyEligible State Lead Entities

State Units on AgingState Medicaid AgenciesOther State Agencies

In concert with…Aging and Disability Resource

CentersState Lifespan Respite Coalition


Mandated Collaboration: What does it Mean for Your State?ADRC and State Respite Coalitions must

be a partner in program implementation.The State’s Application must include:

Memorandum of agreement regarding the Joint responsibility for the eligible State agency's Lifespan Respite program between the eligible State agency and a public or private nonprofit statewide respite coalition or organization.


State Match Requirement

25% Match Required

Can be Cash or In-Kind

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Lifespan Respite Programs Must…Advance State’s Ability to Meet Respite

NeedsServe all Population/Disability Groups,

especially gap populationsCoordinate With, and on Behalf of,

Existing Respite Programs and Infrastructures

Have a Consumer FocusDemonstrate Stakeholder Collaboration

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Current Status


Grantee Activities: Examples


South Carolina: Expanding Volunteer Training and Provider Opportunities using faith-based and Senior Companion programs; Tennessee using University-based volunteer training program

Arizona: Developing partnership with Adult Protective Services to provide respite to high risk families; Illinois: set aside grant funds to pay for some emergency respite•North Carolina: “Just One More”: 100 NC

counties will be challenged to develop at least one new respite service


New Grantees: Roles of State Respite Coalitions and ADRCs


What are these entities and what do they do?


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Role of State AgenciesAll must engage in Program Administration/Implementation/ Oversight/ Leadership.

May undertake themselves toCoordinate Respite InformationCoordinate Statewide Respite Databases orContract to Local Entities To Complete

Required Tasks


State Respite CoalitionNo definition of coalition in law or PANo standardized requirements for structure or

missionMost respite coalitions predate Lifespan Respite;

others developed because of it.Respite Coalitions have a history of advocacy and

networking; some progressed to service/voucher delivery and training.

As far as Lifespan Respite is concerned, coalition’s role and activities are completely determined by decisions jointly made between state lead agency and the coalition.


State Respite Coalition Examples in Grantee StatesSouth Carolina Respite Coalition:

Co-facilitate State Advisory CommitteePull together information on funding

streams, respite barriers, identifying respite gaps.

North Carolina: Serve on State Advisory Board Responsible for New Training and Program

Material Development (e.g. cultural diversity, volunteer respite guide)


State Respite Coalition Examples in Grantee StatesIllinois Respite Coalition will:

Establish 800 numberResponsible for provider training

Texas Respite Coalition: Distribute productsIdentify ongoing barriers and best

practicesAttract media attention and raise

awareness38


Aging and Disability Resource Center

Serve as “one stop shops” or "no wrong door” entry into long-term supports and services system for older adults and people with disabilities;

Over 200 ADRCs funded in 49 states and territories;

Jointly funded by CMS and AoA;

Lifespan Respite Law has a specific definition of ADRC, but the law does not mandate what the specific role of the ADRC should be in program implementation.


State Examples of ADRC RoleConnecticut: ADRC will be single point of entry; CT

Lifespan Respite Coalition as “respite portal.”South Carolina: Bridging Family to Family Health

Centers with ADRCs through electronic resources.Tennessee: ADRC and Coalition working side-by-side

to form “no-wrong door” approach. Alabama: Alabama Connect, virtual ADRC, will house

Alabama Lifespan Respite Network website, but Respite Network will be point of contact.

Texas: With state funding, ADRCs given priority to receive grants to serve as Lifespan Respite local points of entry


State Role: Getting Ready to Implement Lifespan Respite


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FY 2011 Timeline


Lessons From First Round of Federal Funding


Questions to Consider


How do we build or strengthen our State Respite Coalition? What role will it play?

Respite Coalitions Can:

Advocate with a Respite Focus

Conduct Program Oversight

Provide Guidance and Expertise to Lead Agency

Serve as Respite “Portal” for Access to Lifespan System

Develop and Offer Respite Recruitment/Training

Network 45ARCH National Respite Network and Resource Center

What will be the role of the ADRC?Outreach, public awareness and information dissemination

Serve on State Advisory Teams or Task Forces

Expand Caregiver TrainingEmbed Respite Hotlines


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What are the short and long term goals we need to reach to become a Lifespan Respite state?Develop a Timeline to Prepare for Funding

and Application WritingDevelop relationships, enhance

collaborations between ADRCs, Respite Coalition, Governor’s office, State and Local Agencies

Research and Identify Current State Respite Needs/Barriers/Funding Sources

Collaborate to Design Your State’s Program – What should it look like??


For More InformationARCH National Respite Network and Resource Center http://www.archrespite.org/

Caregiver Programs& Lifespan Respite:Technical Assistance Centers

This project is supported, in part, under a grant from the U.S. Department of Health and Human Services, Administration on Aging. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. These contents, however, do not necessarily represent the policy of the U.S. Department of Health and Human Services and endorsement by the Federal government should not be assumed.


lifespan respite: who, what, why, where and how?

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