Fourteen families with children who have chronic illness or disability and whose respite needs were beyond the scope of assistance available through current programs recently participated in a new Community-Based Resource Grant respite program. Families who had identified respite as a particular concern through our Focus Group and questionnaire were invited to participate. Referrals also came from other agencies including Children with Special Health Needs, the Family, Infant and Toddler Project of Vermont, and local mental health agencies.

The grant funds assisted families who said that respite is an ongoing challenge in their lives, in spite of current available services. Challenges described included lack of available providers, lack of trained providers, inconsistency of providers, low wages for home health care providers, inflexible systems unable to meet respite needs as defined by families (based on a medical model rather than a family centered model), and eligibility criteria for respite funding.

Through this grant, families had an opportunity to redefine respite for their own family-and the definitions were as distinct as families themselves. Some chose to use their respite funding to independently hire caregivers/aides to supplement current services, to work hours that were not covered, and/or to supplement standard wages for caregivers. Funding was used to supplement wages to ensure coverage during nights, weekends, and holidays. Some families needed care during school breaks, emergencies, or while waiting for their child to enter other services. Families used flexible funds for services and hours not covered under standard respite allowances, such as physical therapy, care for a child with cancer, transportation to medical appointments, or care for other children without a special need so caregivers could focus on the child with special needs. One family used their respite funds to reunite with their daughter and her family who live out of state and whom they hadn't seen in many years.

After families had an opportunity to enjoy respite provided by this grant, a follow-up survey was completed. Outcomes described by families included reduced stress levels and increased ability to cope with challenges. Families and caregivers reported having more opportunity for self-renewal and to reconnect as a family. One family commented, "The funds helped us to more clearly understand respite and its importance in our hectic lives." Another family liked having the financial resources to manage and allocate for services that benefited everyone in the family rather than justifying a medical situation to a local mental health case manager every time services were needed. Families enjoyed having access to family-centered and family driven services and service providers: "Family-centered activities allow us to balance individual needs, needs as a couple, normal family needs, and special needs...." For many families, having the funds accessible in one lump sum and the ability to pay at the time of service resulted in obtaining dependable, reliable, and consistent service providers.