ACCESS TO REHABILITATION SERVICES, EQUIPMENT, AND TECHNOLOGY FOR CHILDREN WITH SPECIAL HEALTH CARE NEEDS

PURPOSE: Health care for children with special health care needs (CSHCN) often includes a complex array of services. Access to rehabilitation services, durable medical equipment (DME), and medical technology has become more challenging for these children and their families. The primary purpose of this study was to describe families' experiences with access to these services for their CSHCN. SUBJECTS: The national database from the Family Partners Project (FPP) was used in this study. This database contains responses from over 2000 families across 20 states on the questionnaire: "Your Voice Counts! The Health Care Experiences of Families of Children with Special Health Care Needs." The FPP was conducted between 1997-2000 and is a collaborative enterprise between Family Voices and the Heller School of Social Policy at Brandeis University. METHODS AND MATERIALS: A questionnaire was developed to obtain information on a variety of topics related to health services for CSHCN. The final version contains 89 items. A mail survey was conducted to obtain data. ANALYSES: Descriptive statistics were generated to describe the sample and to identify problems in access to services. RESULTS: The mean age for children was 9 years (sd=4.6 years) and for parents was 39.3 years (sd=8.4 years). A majority of the children were male (58%) and Caucasian (71%). Parents' mean rating of their children's overall health was "good" and most (41%) reported their children's health conditions as "somewhat stable." Of the children needing therapy, nearly 40% (n=621) had problems with services. Of the 52% of respondents who reported that their child needed DME or medical technology, 8% were dissatisfied and 8% said their children needed but did nut get these services. The most frequently reported children's conditions were: developmental delay (52%), cerebral palsy (29%), and orthopedic or behavior problems (28% each). Children with any of these four conditions had poorer overall health ratings than children without these conditions. Parents of children with developmental delay most frequently reported problems with therapy services (67%) and DME (59%) for their children followed by parents of children with cerebral palsy (41% and 53%, respectively). CONCLUSIONS: This study provides valuable information for physical therapists about the challenges of access to rehabilitation services for CSHCN and their families. Findings from this study will help physical therapists become more effective providers of family-focused care and more informed advocates for CSHCN and their families.
O'Neil M. MCP Hahnemann University, Department of Rehabilitation Sciences, Philadelphia, [...]