LIFESPAN RESPITE:WHO, WHAT, WHY, WHERE AND HOW?UPDATED MARCH 2013

U

Family Caregiving in the US

62 million unpaid family caregivers provide 80% of long-term care in the US

Valued at over $450 billion a year in uncompensated care, more than total Medicaid spending in 2009

2

Family Caregiving is Lifespan!

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

28% of family caregivers care for someone age 50-75.

28% care for someone under age 50, including children.

Sources: Caregiving in the U.S. 2009. Bethesda, MD: National Alliance for Caregiving and Washington, D.C.: AARP, 2009. and Lynn Feinberg, L., Reinhard, Susan, C, Houser, A. and Choula, R. (2011). Valuing the Invaluable: 2011 Update The Growing Contributions and Costs of Family Caregiving, 2011 Update, AARP Public Policy Institute Issue Brief Insight on the Issues, Washington, DC: AARP

3

Family Caregiving in [Fill in your state]

In 2009, [fill in number of] family caregivers in [State] provided [fill in number of] million hours of care.

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

But they cannot do it alone!

Source: Lynn Feinberg, L., Reinhard, Susan, C, Houser, A. and Choula, R. (2011). Valuing the Invaluable: 2011 Update The Growing Contributions and Costs of Family Caregiving, 2011 Update, AARP Public Policy Institute Issue Brief Insight on the Issues, Washington, DC: AARP

4

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 definition

PL 109-442

5

Benefits of Respite Improves 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!

6

Respite: Too Little, Too Late

89% of family caregivers do not receive respite.

Of those who do, they receive too little, often too late.

Respite needs to be meaningful for caregivers, as well as care receiver.

7

Barriers to Respite8

For All Family Caregivers

Confusing and Restrictive Eligibility Criteria

Affordability Issues

Limited Providers or Respite Options

Reluctance to identify as caregiver or ask for help

9

10

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 Program

Bureaucratic Maze of Funding Streams and Services

What is Lifespan Respite?

11

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

12

Lifespan Respite is like a Quilt

13

It weaves together extremely important, but fragmented funding streams, disparate and duplicative programs, and silos to form a seamless system that make barriers

invisible to families.

Barriers to Building Blocks

By coordinating siloed funding and service streams, Lifespan Respite converts barriers to building blocks for accessible respite systems.

14

Characteristics of Lifespan Respite Programs

Identify and coordinate existing respite resources/funding at state level

Maximize use of existing resources/leverage new ones

Identify service gaps to help create and monitor new respite services

Connect families to respite services, providers, and payment resources

Recruit and train respite providers Promote public awareness about respite

15

Best Practices from Original State Lifespan Respite Systems

16

Oregon’s Lifespan Program

State Agency: In 1997, Oregon Department of Human Services (DHS) charged by state law to develop statewide respite coordination

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

Diverse State Advisory Council brought Lifespan Perspective

Note: Despite the fact that the Oregon Lifespan Respite Program was unfunded in 2010 because of serious state budget constraints, the program is included because it serves as a unique model for Lifespan Respite coordination that successfully demonstrated improved access to respite for over 14 years.

17

Nebraska’s Lifespan Program

Nebraska Lifespan Respite Services Program created by legislation in 1999

Lifespan Respite Network 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)

18

18

NE Respite Network More Regional than Local (like in OR)

Regional Structure: HHSS contracts with six (6) regional entities to form the NE Lifespan Network

19

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

No local/regional structure

20

Oklahoma’s Lifespan Program:Consumer-Directed

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.

Program relies on existing funding streams funneled through single administrative system.

21

Moving to National Scale

Lifespan Respite law signed in 2006 Funded for the first time in 2009 at $2.5 million Level funded each year

22

Federal Lifespan Respite Care Program

US Administration for Community Living, Administration on Aging administers competitive state grants for mandatory uses of funds:

Development or enhancement of State and local Lifespan Respite systems

Planned or emergency respite for all ages Training and recruitment of

providers/volunteers Provision of information to caregivers about

respite services, and assistance in gaining access

23

State Lead Agency24

Eligible State Lead Entities State Units on Aging State Medicaid Agencies Other State Agencies

In concert with… Aging and Disability

Resource Centers State 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.

25

State Match Requirement

Cash In-Kind

26

25% State Match can be:

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

Needs Serve all Population/Disability Groups,

especially gap populations Coordinate With, and on Behalf of,

Existing Respite Programs and Infrastructures

Have a Consumer Focus Demonstrate Stakeholder Collaboration

27

Current Status28

Innovation and Promising Practices

Grantee Activities:  Examples

29

Innovations & Promising Practices

30

Environmental Scans/Needs Assessments Respite Registries and Databases Marketing and Outreach Campaigns

Give Caregivers a Hand (AZ) Take Time Texas

Volunteer Programs TimeBanks Model (RI) Faith-based University Students

Innovations and Promising Practices

31

Respite Voucher & Service Delivery Models Establishment of new voucher programs Mobile respite (OK) Respite Events

Mini-Grant Programs Seed money Local focus Just One More (NC)

Respite Provider Training and Recruitment NH Partnership with College of Direct Support

Lifespan Respite Built on Collaboration32

Role of State Agencies

Program

Administration/Implementation

Program Oversight

Contracting to Local Entities

33

Aging and Disability Resource Center

Joint CMS and ACL/AoA Initiative;

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

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.

34

Role of Aging and Disability Resource Center

Provide referral assistance House respite data bases Assist with outreach/public

awareness In TX, ADRCs are eligible local

entities for administering State Lifespan Respite funds

35

State Respite Coalition No definition of coalition in law or ACL/AoA

program announcement No requirements for structure or mission Most respite coalitions predate Lifespan Respite;

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

networking; some progressed to service delivery and training.

In Lifespan Respite: Coalition’s role and activities completely determined by decisions jointly made between state lead agency and the coalition.

36

Coalition Significance to Lifespan Respite Program

Brings Age and Disability Diversity

Brings Respite Expertise and Skills

Ensures ongoing support for the program through advocacy

37

State Respite Coalition Examples in Grantee States South Carolina Respite Coalition:

Co-facilitate State Advisory Committee Pull together information on funding streams,

respite barriers, identifying respite gaps, voucher program administration.

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

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

38

State Respite Coalition Examples in Grantee States Delaware Respite Network

Runs statewide voucher program Holds annual state summit with focus

on family caregivers Arizona Caregiver Coalition

Advocacy role: responsible for helping enact state Lifespan respite legislation

Coalition volunteers run the 800 number for caregiver helpline

39

State Respite Coalition Examples in Grantee States

New York State Caregiving and Respite CoalitionHolds Annual Caregiver SummitNYSCRC web site to house program resourcesLiaison between grantee and community

Ohio Respite CoalitionDrafted Strategic Plan

WA

40

Lessons Learned41

It takes time…. Build on model approaches Partnerships are essential Flexibility is key Performance measurement from day

one Sustainability focus is critical from the

outset

Emerging Themes in Sustainability Engage grassroots/community Embed Lifespan Respite activities into

ongoing state efforts Forge State agency fiscal

partnerships Grow and support State Respite

Coalition to work on sustainability Develop Long-term State Respite Plan

42

Questions to Consider43

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

Advocacy/Program Sustainability Conduct Program Oversight Provide Guidance and Expertise Serve as Respite “Portal” to Lifespan

System Respite Provider Recruitment/Training Develop Products Deliver Services Facilitate Networking

44

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

information dissemination Serve on State Advisory Teams

or Task Forces Expand Caregiver Training Embed Respite Hotlines

45

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 writing Develop relationships, enhance collaborations

between ADRCs, Respite Coalition, Governor’s office, State and local agencies

Research and identify current State respite needs/strengths/barriers/funding sources

Collaborate to design State program – What should it look like?? How will we measure success?

Develop sustainability plan!!

46

For More Information

ARCH National Respite Network and Resource Center http://www.archrespite.org/

Lifespan RespiteTechnical Assistance Center

This project is supported, in part, under a grant from the U.S. Department of Health and Human Services, Administration for Community Living, 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.

47