LIFESPAN RESPITE:
WHO, WHAT, WHY,
WHERE AND HOW?
UPDATED MARCH 2013
Family Caregiving in the US
2
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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
Family Caregiving is Lifespan!
3
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
Family Caregiving in [Fill in your state]
4
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

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
What is Respite?
5

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
Benefits of Respite
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
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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 outof-home placements;
Gives care recipient a break, too!
Respite: Too Little, Too Late
7
 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.
8
Barriers to Respite
For All Family Caregivers
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
Confusing and Restrictive Eligibility Criteria

Affordability Issues

Limited Providers or Respite Options

Reluctance to identify as caregiver or ask for
help
10
Bureaucratic Maze of Funding
Streams and Services

Medicaid Waivers

New Health Care Reform and VA Provisions

National Family Caregiver Support Program

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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
What is Lifespan Respite?
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Lifespan Respite …not just care or a
service, but…..
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Lifespan Respite Definition:


Coordinated SYSTEMS of accessible, communitybased 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
Lifespan Respite is like a Quilt
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
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
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By coordinating siloed
funding and service
streams, Lifespan
Respite converts
barriers to building
blocks for accessible
respite systems.
Characteristics of
Lifespan Respite Programs
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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
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Best Practices from Original
State Lifespan Respite Systems
Oregon’s Lifespan Program
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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.
Nebraska’s Lifespan Program
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
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)
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NE Respite Network More Regional than
Local (like in OR)
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
Regional Structure: HHSS contracts with six (6)
regional entities to form the NE Lifespan Network
Oklahoma’s Lifespan Program
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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
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.
Program relies on existing funding streams
funneled through single administrative system.
Moving to National Scale
22
Lifespan Respite law signed
in 2006
 Funded for the first time in 2009
at $2.5 million
 Level funded each year

Federal Lifespan Respite Care Program
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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
State Lead Agency
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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?
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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
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25% State Match can be:

Cash
In-Kind
Lifespan Respite Programs Must…
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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
Current Status
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31 State Lifespan
Respite
Grantees
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Innovation and Promising Practices
Grantee Activities: Examples
Innovations & Promising Practices
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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
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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 Collaboration
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ADRC
State Lead
Agency
Role of State Agencies
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
Program Administration/Implementation

Program Oversight

Contracting to Local Entities
Aging and Disability Resource Center
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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.
Role of Aging and Disability Resource Center
35
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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
State Respite Coalition
36
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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.
Coalition Significance to
Lifespan Respite Program
37
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Brings Age and Disability Diversity

Brings Respite Expertise and Skills

Ensures ongoing support for the
program through advocacy
38
State Respite Coalition Examples in
Grantee States
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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)
State Respite Coalition Examples in
Grantee States
39
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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
State Respite Coalition Examples in
Grantee States
40

New York State Caregiving and Respite
Coalition
 Holds
Annual Caregiver Summit
 NYSCRC
 Liaison

web site to house program resources
between grantee and community
Ohio Respite Coalition
 Drafted
Strategic Plan
Lessons Learned
41
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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
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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
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Questions to Consider
How do we build or strengthen our State Respite
Coalition? What role will it play?
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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
What will be the role of the ADRC?
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Outreach, public awareness and
information dissemination
Serve on State Advisory Teams or Task
Forces
Expand Caregiver Training
Embed Respite Hotlines
What are the short and long term goals we need
to reach to become a Lifespan Respite state?
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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!!
For More Information
47
ARCH National Respite Network and
Resource Center
http://www.archrespite.org/
Lifespan Respite
Technical 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.