Complementary, Alternative, and Mainstream Service use Among Families with Young Children with Multiple Disabilities: Family Costs to Access Choices

Abstract

ABSTRACT Families raising a young child with multiple disabilities are charged with significant responsibilities such as learning about their child's condition and navigating mainstream and alternative services. Aim: Describe service choices, costs, out of pocket expenses, and the impact on families. Methods: Survey design using a custom questionnaire was used to collect extensive retrospective and current data. Purposive sampling (N = 29) occurred from one early intervention facility specialized in servicing children with cerebral palsy (CP) and, or multiple disabilities in Australia. Descriptive statistics were used for analysis of data. Results: Twenty-three (79%) families reported caring for a child with CP. Twenty-three families reported using at least one complementary/alternative intervention. Out-of-pocket amounts were reported including: chiropractic services (10 families); naturopathy (9 families); point percussion therapy (7 families), and Chinese medicine (6 families). Expenses resulted in families reporting forgoing clothing items, family entertainment, recreation/hobbies for parents (55%); family holidays (59%); time for parents alone (66%); and health services for parents (38%). Conclusions: Families of young children with multiple disabilities select a wide range of services for their child, with consequential out of pocket expenses. Early intervention professionals can be an important resource for families as they evaluate their choices and select interventions for their child.

Keywords: Cerebral palsy; complex needs; complimentary medicine; family costs; family support; parents; physical disabilities; service use; socio-economic status; therapy.