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Delaware LifespanRespite Care NetworkDelaware LifespanRespite Care Network
Delaware Caregivers Support CoalitionLessons Learned
October 25th, 2010
Delaware Caregivers Support CoalitionLessons Learned
October 25th, 2010
When you need a breakWhen you need a break
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Delaware Lifespan Respite Care NetworkDelaware Lifespan Respite Care Network
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
Presenters
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Delaware Lifespan Respite Care NetworkDelaware Lifespan Respite Care Network
Introduction/Overview
Context – Delaware, The First State Process – History of the Coalition/Network Results – Where we are todayLessons Learned – What we learned from
our experience
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Delaware Lifespan Respite Care NetworkDelaware Lifespan Respite Care Network
49th state in total land mass 45th in population size – less than 1 million Caregivers = 160,000 unpaid family caregivers
(AARP, 2007)
Context: Delaware, The First State
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Delaware Lifespan Respite Care NetworkDelaware Lifespan Respite Care Network
Center for Disabilities Studies,University of Delaware
Respite Care in Delaware: A Critical Need (2003)
Respite Task ForceFinal reportKey finding – need more information
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Delaware Lifespan Respite Care NetworkDelaware Lifespan Respite Care Network
Delaware Caregiver Support Coalition (2004 – 2006):
Define the Need
Easter Seals leadership Coalition – 20+ organizations and individuals 2 surveys – caregivers and providers Report (10/06)
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Delaware Lifespan Respite Care NetworkDelaware Lifespan Respite Care Network
Exploring Respite Care in DelawareCoordinating 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
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Delaware Lifespan Respite Care NetworkDelaware Lifespan Respite Care Network
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
Governor’s Commission for Community-Based Alternatives for People with Disabilities
(2006 – 2007)
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Delaware Lifespan Respite Care NetworkDelaware Lifespan Respite Care Network
2-year grant to state resource and referral agency(Children & Families First)
Respite Online – searchable database
Delaware Developmental Disabilities Council(2007 – 2008)
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Delaware Lifespan Respite Care NetworkDelaware Lifespan Respite Care Network
3-year plan and budget presented to 3 local foundations
Providing approximately $500,000 over 3 years to develop and implement the system
Foundation Funding (Fall 2008)
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Delaware Lifespan Respite Care NetworkDelaware Lifespan Respite Care Network
Established a mission
Articulated services
Developed an organizational structure
Delivered services
The Plan Becomes Reality:
Delaware Lifespan Respite Care Network
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Delaware Lifespan Respite Care NetworkDelaware Lifespan Respite Care Network
To assure that people with disabilities and their caregivers will have easy access to quality, affordable respite care.
Established Mission
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Delaware Lifespan Respite Care NetworkDelaware Lifespan Respite Care Network
Access to information
Affordability of respite care
Adequate supply of quality respite care
Articulated Services Based onDocumented Needs
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Delaware Lifespan Respite Care NetworkDelaware Lifespan Respite Care Network
Advisory committee
Sub-Committees
Policies and procedures
Contracts
Outreach plan
Developed an Organizational Structure
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Delaware Lifespan Respite Care NetworkDelaware Lifespan Respite Care Network
Website: www.delrespite.org
Information & referral service: RespiteOnline 888-610-5572
Grants to families
Delivered Services Beginning 7/1/09
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Delaware Lifespan Respite Care NetworkDelaware Lifespan Respite Care Network
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
What Was Needed?
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Delaware Lifespan Respite Care NetworkDelaware Lifespan Respite Care Network
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)
What Was Available?
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Delaware Lifespan Respite Care NetworkDelaware 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
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Delaware Lifespan Respite Care NetworkDelaware Lifespan Respite Care Network
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
First Year Anniversary
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Delaware Lifespan Respite Care NetworkDelaware Lifespan Respite Care Network
Doubling of listings on online database
Doubling of Financial Assistance Applications
More children served than adults (70% to 30%)
Respite care options recipients chose
First Year Anniversary Trends
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Delaware Lifespan Respite Care NetworkDelaware Lifespan Respite Care Network
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.
Assuring that the maximum number of caregivers are helped by our subsidy funds requires:
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Delaware Lifespan Respite Care NetworkDelaware Lifespan Respite Care Network
Caregiver Comments
Caregiver Stories
Effectiveness of the System
Does providing respite help caregivers?
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Delaware Lifespan Respite Care NetworkDelaware Lifespan Respite Care Network
Understand the need
Document what you learn
Communicate what you learn
Develop a sustainable system
Lessons Learned for Developing and Sustaining a Statewide System
Thank YouThank You
Delaware Caregiver Support Coalition Delaware Caregiver Support Coalition
