Since 1973, Autism Ontario has worked with government leaders towards a vision of “acceptance and opportunities for all individuals with ASD”. The Realize Community Potential Project (RCP) was funded by the Province of Ontario beginning in 2006, to directly support parents of children with Autism Spectrum Disorders (ASD). Major goals of the program include: helping reduce stress in the families, and providing long-term support and resources for families. A program evaluation component was also funded to evaluate effectiveness and identify strengths and improvements needed in the program.
One goal of the program evaluation team was to determine if reductions of reported parent stress had occurred in areas where the RCP program has been implemented.
Two tools were developed to assess short-term and longer-term stress in parents. The short-term measure quickly evaluates perceived parent stress levels (using a 5-point Likert scale). It was completed by the RCP Coordinator at the beginning and end of a contact. A longer-term stress measure incorporated modifications of existing measures (the Childhood Autism Rating Scales-Parent version and the Family Empowerment Scale). It evaluated parent perceived self-efficacy, perceived ability to navigate the system and act as a child’s advocate, severity of child symptoms and stress associated with those symptoms. This survey was given to families during the first contact with an Autism Ontario local chapter. Twelve to eighteen month follow-up is now occurring, with re-administration of the measure. Results will be compared with families from other local chapters where no RCP program is available.
Short-term Stress -- Parents seeking general information on Autism Ontario, ASDs, or available services in the community showed a reduction in perceived short-term stress ranging from .12 to .93 points on the 5-point scale. Families contacting the RCP coordinator while in crisis showed the greatest reduction in rated stress, from a mean of 4.0 at the start of contact down to a mean of 2.73 (1.27 mean reduction).
Longer-term Stress -- The first round of data summarized are from parents at their initial contact with the RCP chapter. Data after 12-18 months of contact with the RCP chapter, as well as control data from non-RCP chapters are currently being collected. The majority of families rated their child’s symptoms as “a little bit” to “quite a bit” stressful. Intellectual impairment and deficits in verbal communication were the symptoms of autism that were associated with the highest stress ratings. The majority of families rated themselves as feeling empowered. The item that was the most endorsed was “I have the right to approve all services my child receives.” In a general quality of life question, 64% of families rated themselves as having a positive quality of life, and 14% of families rated themselves negatively.
Evaluation of funded programs is ultimately a highly cost-effective way to enhance public accountability, by identifying the effective components of programs such as RCP, to guide future program development and to inform future allocation of limited funding resources.