The design of a program for waitlisted caregivers of individuals with developmental disabilities

A program was designed for caregivers of individuals with developmental disabilities and challenging behaviors who were waiting for services from an organization that provides psycho-educational consultation and caregiver skills-training. Although lengthy waiting lists for this population are widespread, there is a dearth of research on the effects of caregivers waiting for services. Anecdotal reports from organization employees indicated concerns that waiting for services could result in increased distress and frustration for caregivers, unmet needs for caregivers and care recipients, and a diminished ability to participate in services when they do become available. The program was designed as an interim service to prevent these potentially adverse effects and to encourage waiting list members to use their waiting time effectively. A program planning and evaluation model (Maher, 2000) was utilized to determine areas of need for the waiting list members. This assessment was based upon a written survey of waiting list members and upon two focus groups with staff members of the organization. Data were analyzed from eighteen waiting list members and seven staff members of the organization. Four areas of need were identified including the need for information about managing the caregivers' negative emotions, managing the care recipients' challenging behaviors, accessing services, and accessing social support. An evaluation based upon the AVICTORY model (Davis & Salasin, 1975) was also conducted of the organization's context to determine the level of commitment within the organization to the program and the ability of the organization to implement one. A waiting list program was then designed that addressed the identified needs of the waiting list members and considered the resources of the organization. Design components are detailed including one home-based visit, monthly educational worksheets, and opportunities to communicate with the organization regarding questions or referral information. An evaluation plan is included to insure that the effectiveness of the program can be determined. Recommendations, limitations of the study, and implications for practitioners were discussed.