When you need a break
Delaware Lifespan
Respite Care Network
Delaware Caregivers Support Coalition
Lessons Learned
October 25th, 2010
Delaware Lifespan Respite Care Network
Presenters
Dr. Timothy Brooks, Parent; Disability Coordinator, Center for
Disability Studies, University of Delaware (retired)
Kathy Hyde, ElderBuddy Program Coordinator, Children &
Families First
Dr. Barbara Snyder, Project Manager, Delaware Lifespan
Respite Care Network
10/25/10
Delaware Lifespan Respite Network
www.delrespite.org
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Delaware Lifespan Respite Care Network
Introduction/Overview
 Context – Delaware, The First State
 Process – History of the Coalition/Network
 Results – Where we are today
 Lessons Learned – What we learned from
our experience
10/25/10
Delaware Lifespan Respite Network
www.delrespite.org
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Delaware Lifespan Respite Care Network
Context: Delaware, The First State
 49th state in total land mass
 45th in population size – less than 1 million
 Caregivers = 160,000 unpaid family caregivers
(AARP, 2007)
10/25/10
Delaware Lifespan Respite Network
www.delrespite.org
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Delaware Lifespan Respite Care Network
Center for Disabilities Studies,
University of Delaware
Respite Care in Delaware: A Critical Need (2003)
 Respite Task Force
 Final report
 Key finding – need more information
10/25/10
Delaware Lifespan Respite Network
www.delrespite.org
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Delaware Lifespan Respite Care Network
Delaware Caregiver Support Coalition (2004 – 2006):
Define the Need
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10/25/10
Easter Seals leadership
Coalition – 20+ organizations and individuals
2 surveys – caregivers and providers
Report (10/06)
Delaware Lifespan Respite Network
www.delrespite.org
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Delaware Lifespan Respite Care Network
Exploring Respite Care in Delaware
Coordinating Council for Children with Disabilities (10/06)
 Focused toward advocates and policymakers
 Speakers: Senator Dennis Byars, Nebraska and
Delaware representatives
 Report of presentations and discussions
10/25/10
Delaware Lifespan Respite Network
www.delrespite.org
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Delaware Lifespan Respite Care Network
Governor’s Commission for Community-Based
Alternatives for People with Disabilities
(2006 – 2007)
 2-year grant to Center for Disabilities Studies, U of DE
 Purpose – develop an operational plan for statewide
system
 How developed – coalition met over 2 years to discuss,
research, etc.
 Final report (12/07) included a 3-year operational plan
and budget
10/25/10
Delaware Lifespan Respite Network
www.delrespite.org
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Delaware Lifespan Respite Care Network
Delaware Developmental Disabilities Council
(2007 – 2008)
 2-year grant to state resource and referral agency
(Children & Families First)
 Respite Online – searchable database
10/25/10
Delaware Lifespan Respite Network
www.delrespite.org
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Delaware Lifespan Respite Care Network
Foundation Funding (Fall 2008)
 3-year plan and budget presented to 3 local
foundations
 Providing approximately $500,000 over 3 years to
develop and implement the system
10/25/10
Delaware Lifespan Respite Network
www.delrespite.org
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Delaware Lifespan Respite Care Network
The Plan Becomes Reality:
Delaware Lifespan Respite Care Network
 Established a mission
 Articulated services
 Developed an organizational structure
 Delivered services
10/25/10
Delaware Lifespan Respite Network
www.delrespite.org
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Delaware Lifespan Respite Care Network
Established Mission
 To assure that people with disabilities and their
caregivers will have easy access to quality,
affordable respite care.
10/25/10
Delaware Lifespan Respite Network
www.delrespite.org
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Delaware Lifespan Respite Care Network
Articulated Services Based on
Documented Needs
 Access to information
 Affordability of respite care
 Adequate supply of quality respite care
10/25/10
Delaware Lifespan Respite Network
www.delrespite.org
13
Delaware Lifespan Respite Care Network
Developed an Organizational Structure
 Advisory committee
 Sub-Committees
 Policies and procedures
 Contracts
 Outreach plan
10/25/10
Delaware Lifespan Respite Network
www.delrespite.org
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Delaware Lifespan Respite Care Network
Delivered Services Beginning 7/1/09
 Website: www.delrespite.org
 Information & referral service:
 RespiteOnline
 888-610-5572
 Grants to families
10/25/10
Delaware Lifespan Respite Network
www.delrespite.org
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Delaware Lifespan Respite Care Network
What Was Needed?
 Website for caregiver access to information
(www.delrespite.org)
 Searchable database with online access
(RespiteOnline)
 System for phone access to information
 Process for distribution of financial assistance
grants
10/25/10
Delaware Lifespan Respite Network
www.delrespite.org
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Delaware Lifespan Respite Care Network
What Was Available?
 Lead agency to manage project implementation
of services (Easter Seals)
 Statewide, nonprofit information and referral
agency (Children & Families First)
 Coalition to establish Financial Assistance policy
and form sub-committee for review of application
(Delaware Caregiver Support Coalition)
10/25/10
Delaware Lifespan Respite Network
www.delrespite.org
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Delaware Lifespan Respite Care Network
Creation of service delivery and
information access and distribution
processes for the DE Lifespan Respite
Care Network:
Greatly reduced costs
Greatly reduced time
By July 1, 2009
10/25/10
Delaware Lifespan Respite Network
www.delrespite.org
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Delaware Lifespan Respite Care Network
First Year Anniversary
Service Delivery Statistics (July 1, 2009 through
June 30, 2010)
 116 clients applied for subsidy dollars to pay for their
respite care needs –
 $53,150 obligated; 22 people on waiting list
 89 clients requested information and referral services
 438 online self-searches were completed
10/25/10
Delaware Lifespan Respite Network
www.delrespite.org
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Delaware Lifespan Respite Care Network
First Year Anniversary Trends
 Doubling of listings on online database
 Doubling of Financial Assistance Applications
 More children served than adults (70% to 30%)
 Respite care options recipients chose
10/25/10
Delaware Lifespan Respite Network
www.delrespite.org
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Delaware Lifespan Respite Care Network
Assuring that the maximum number of
caregivers are helped by our subsidy funds
requires:
 Ongoing monitoring of each caregiver’s funding usage
 Periodic contact with caregivers to remind them how
much funding they have
 Focused efforts, particularly in the second half of the
year, on encouraging caregivers to use their funding
 Requesting that caregivers who don’t think they will use
their funding to relinquish it for use by others who need
it.
10/25/10
Delaware Lifespan Respite Network
www.delrespite.org
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Delaware Lifespan Respite Care Network
Effectiveness of the System
Does providing respite help
caregivers?
 Caregiver Comments
 Caregiver Stories
10/25/10
Delaware Lifespan Respite Network
www.delrespite.org
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Delaware Lifespan Respite Care Network
Lessons Learned for Developing and Sustaining
a Statewide System
 Understand the need
 Document what you learn
 Communicate what you learn
 Develop a sustainable system
10/25/10
Delaware Lifespan Respite Network
www.delrespite.org
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Thank You
Delaware Caregiver Support Coalition