The Autism Society of California (ASC) collaborates with other organizations to ensure individuals and families living with autism and other developmental disorders, are able to maximize their quality of life, to be treated with the highest level of dignity, and live in a society where their talents and skills are appreciated. As part of our endeavor, ASC has conducted online surveys every two years (2012, 2014) in our community to measure key areas across the lifespan. This year we focused on looking at two of the main service systems which serve adults in California (Regional Centers and Department of Rehabilitation) and nine Key Performance Indicators (KPI) with an emphasis on the adult population.
This year we broadened the reach of the survey to include not only individuals with autism and their families, but also individuals with Intellectual/Developmental Disabilities (I/DD) and their families. We are grateful to the individuals and families who participated in the survey as well as the policy makers, government agencies and other non-profit organizations who continue to strive for a higher quality of life for all.
2016 Survey Key Performance Indicators
1. Service Systems
2. Autonomy and Self-Advocacy
3. Respect and Dignity
6. Social Connections
7. Academic Success
8. Meaningful Employment with Fair Wages
9. Independent Living
The 2016 ASC survey was offered electronically in English and Spanish in July and August 2016 to individuals with developmental disabilities. Parents of children, family members of adults, and self-advocates were encouraged to participate. Overall 1,202 individuals participated in the 2016 ASC Survey. Participants were excluded who did not meet this criterion. In the end 1,172 surveys were analyzed. We find this survey 95% accurate with a +/- 3%
Data limitations: While we made every effort to reach out to nonprofit organizations for all developmental disabilities, 87% of the survey respondent’s primary diagnosis was autism.
Additionally, individuals from 30 counties in California participated, but the predominant numbers of individuals were from Southern California. And while the survey was offered in both English and Spanish, the survey garnered 26% participation from Hispanic families compared to the reported Hispanic population of 39% California’s population (CA Governor’s Budget Summary – 2015-16). Conversely, Caucasians were overrepresented in the survey (53% Survey respondents compared to 38% of California population).
Read the full report here.