A four-pronged initiative addressing the respite and home care needs of children with special health care needs (CSHCN) in Connecticut will be described and analyzed. The deinstitutionalization movement shifted the burden of care for disabled children from state to families. Around-the-clock demands to care for a special needs child can be physically, emotionally and financially overwhelming. Recent events and campaign dialogue have highlighted the impact of inadequate supportive infrastructure for families. The apparent abandonment of a Delaware child in a hospital emergency room was tragic, but brought the inadequacy of support to the forefront of public awareness. Without support and respite, children and families may be unsafe. In Connecticut, respite resources exist in a variety of programmatic forms. Some are well established but many are transient and there is no centralized information source. Additionally, anecdotal data revealed shortages of trained caregivers and funding. Strategies of this initiative included 1.) survey of CSHCN families regarding home care needs; 2.) assessment of home care industry's capacity to meet needs; 3.) formation of a community resource group to identify alternative solutions to caregiver shortages, and 4.) an inventory of existing respite resources was conducted and compiled as a Web-based interactive database. Survey results will be discussed and interventions designed by the resource group described. The Web site will be described and demonstrated. Ultimately, participants will be provided with a design for assessing and developing community-based, family centered solutions to caregiving needs for families with a disabled or elderly family member.
Learning Objectives: 1. Participants will understand the need for respite and home care among families with children with special health care needs. 2. Participants will recognize the impact of fragmentation of respite and home care services for CSHCN. 3. Participants will be able to list strategies to build community-based networks of support for families with CSHCN
Keywords: Special Needs, Home Care
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: Yale Center for Children with Special Health Care Needs Program
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.