Delaware Lifespan Respite Care Network
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Transcript Delaware Lifespan Respite Care Network
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
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
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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
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Delaware Lifespan Respite Care Network
Developed an Organizational Structure
Advisory committee
Sub-Committees
Policies and procedures
Contracts
Outreach plan
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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
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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
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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.
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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
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Delaware Lifespan Respite Network
www.delrespite.org
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Thank You
Delaware Caregiver Support Coalition