1. Delaware Lifespan Respite Care Network Delaware Caregivers Support Coalition Lessons Learned October 25 th, 2010 Delaware Caregivers Support Coalition Lessons Learned October 25 th, 2010 When you need a break

2. Delaware Lifespan Respite Care Network 10/25/10 Delaware Lifespan Respite Network www.delrespite.org 2 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

3. Delaware Lifespan Respite Care Network 10/25/10 Delaware Lifespan Respite Network www.delrespite.org 3 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

4. Delaware Lifespan Respite Care Network 10/25/10 Delaware Lifespan Respite Network www.delrespite.org 4  49 th 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

5. Delaware Lifespan Respite Care Network 10/25/10 Delaware Lifespan Respite Network www.delrespite.org 5 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

6. Delaware Lifespan Respite Care Network 10/25/10 Delaware Lifespan Respite Network www.delrespite.org 6 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)

7. Delaware Lifespan Respite Care Network 10/25/10 Delaware Lifespan Respite Network www.delrespite.org 7 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

8. Delaware Lifespan Respite Care Network 10/25/10 Delaware Lifespan Respite Network www.delrespite.org 8  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)

9. Delaware Lifespan Respite Care Network 10/25/10 Delaware Lifespan Respite Network www.delrespite.org 9  2-year grant to state resource and referral agency (Children & Families First)  Respite Online – searchable database Delaware Developmental Disabilities Council (2007 – 2008)

10. Delaware Lifespan Respite Care Network 10/25/10 Delaware Lifespan Respite Network www.delrespite.org 10  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)

11. Delaware Lifespan Respite Care Network 10/25/10 Delaware Lifespan Respite Network www.delrespite.org 11  Established a mission  Articulated services  Developed an organizational structure  Delivered services The Plan Becomes Reality: Delaware Lifespan Respite Care Network

12. 10/25/10 Delaware Lifespan Respite Network www.delrespite.org 12  To assure that people with disabilities and their caregivers will have easy access to quality, affordable respite care. Established Mission

13. Delaware Lifespan Respite Care Network 10/25/10 Delaware Lifespan Respite Network www.delrespite.org 13  Access to information  Affordability of respite care  Adequate supply of quality respite care Articulated Services Based on Documented Needs

14. Delaware Lifespan Respite Care Network 10/25/10 Delaware Lifespan Respite Network www.delrespite.org 14  Advisory committee  Sub-Committees  Policies and procedures  Contracts  Outreach plan Developed an Organizational Structure

15. Delaware Lifespan Respite Care Network 10/25/10 Delaware Lifespan Respite Network www.delrespite.org 15  Website: www.delrespite.orgwww.delrespite.org  Information & referral service:  RespiteOnline  888-610-5572  Grants to families Delivered Services Beginning 7/1/09

16. Delaware Lifespan Respite Care Network 10/25/10 Delaware Lifespan Respite Network www.delrespite.org 16  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?

17. Delaware Lifespan Respite Care Network 10/25/10 Delaware Lifespan Respite Network www.delrespite.org 17  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?

18. Delaware Lifespan Respite Care Network 10/25/10 Delaware Lifespan Respite Network www.delrespite.org 18 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

19. Delaware Lifespan Respite Care Network 10/25/10 Delaware Lifespan Respite Network www.delrespite.org 19 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

20. Delaware Lifespan Respite Care Network 10/25/10 Delaware Lifespan Respite Network www.delrespite.org 20  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

21. Delaware Lifespan Respite Care Network 10/25/10 Delaware Lifespan Respite Network www.delrespite.org 21  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:

22. Delaware Lifespan Respite Care Network 10/25/10 Delaware Lifespan Respite Network www.delrespite.org 22  Caregiver Comments  Caregiver Stories Effectiveness of the System Does providing respite help caregivers?

23. Delaware Lifespan Respite Care Network 10/25/10 Delaware Lifespan Respite Network www.delrespite.org 23  Understand the need  Document what you learn  Communicate what you learn  Develop a sustainable system Lessons Learned for Developing and Sustaining a Statewide System

24. Thank You Delaware Caregiver Support Coalition