Goal 1Universal Livability: A Dream for Tomorrow, A Plan for Today
Goal 2: Promote the Social Model of Disability Research
Ensure standardized disability measurements on all relevant California public health-related data systems, conduct innovative research on health-related issues among the disability population, and widely disseminate data and research.
Rationale:
The past generation has experienced a major shift in popular understanding of disability. Once seen almost exclusively as a medical problem for health care providers to treat or "fix" disability is now seen as a social issue for legislators, judges, urban planners, designers, and other community partners to collectively address. This shift has implications for how the public health data systems gather data, especially health surveys. As those who design state health surveys implement this shift, they will be able to provide decision makers with comparable, standardized data that focuses on functional abilities and environmental (e.g., social and physical) barriers rather than etiology, diagnosis, or lifestyle of persons with disabilities. Further, once gathered and analyzed, this information needs to become available and accessible to the community, programs, and policymakers.
Recommendations for Action:
2.1 ODH will conduct a data inventory and develop recommendations for data systems in California to improve survey questions, sampling designs, and survey operations that effect the participation of people with disabilities in research.
Timeframe: One year.
Cost: 100 percent of a Research Scientist = $82,000.
2.2 ODH will convene a task force to create a Research Agenda to improve the health of people with disabilities, based on findings of the Data Inventory and Recommendations for California Data Systems (2.1). The Research Agenda will include the following:
- Studies that look at health-related issues specific to people with disabilities (e.g., identify barriers to health care and health promotion).
- Studies that compare health-related issues of people with disabilities to people without disabilities (e.g., via population-based surveys).
- Longitudinal studies which follow people with disabilities over time to track quality of life, secondary conditions, and co-morbidities.
Collaborators: Disability constituencies, state health programs, and researchers specializing in the field of disability and health and survey development.
Timeframe: One to two years.
Cost: 25 percent of a Research Scientist = $20,500 + $50,000 for logistics.
2.3 ODH will work with the University of California at San Francisco Disability Statistics Center and other collaborators to develop and validate the Disability and Activity Impact Screener (DAIS). DAIS is a set of disability-related model survey questions that emphasize functional abilities and shed light on environmental (e.g., social and physical) barriers to effectively assess how people do things differently.
Collaborators: Disability constituencies, California State University Long Beach Center for Disability Studies, the California Survey Research Group, Rancho Los Amigos Center on Aging and Disability, Western University, Community Resources for Independent Living (CRIL), and Breast Health Access for Women with Disabilities (BHAWD), and other private, non-profit organizations.
Timeframe: Two years.
Cost: $50,000 to $100,000 in validating DAIS; 50 percent of a Research Scientist = $41,000.
2.4 ODH will work with other DHS programs to incorporate DAIS, the new standardized disability measures, into all relevant DHS surveys; at a minimum this includes the following ongoing surveys:
- California BRFS
- California WHS
- California CHIS
Timeframe: Three to five years.
Cost: $300,000 to $500,000.
2.5 ODH will be point central for disability and health data and research for California. This includes:
- Providing and disseminating accessible data and research in various formats (e.g., ODH and EPICenter web sites, written publications, conferences).
- Conducting on-going data analysis and reporting.
- Providing up-to-date and interactive data and information on the web.
Timeframe: Three to five years.
Cost: 100 percent Research Scientist = $82,000 and 100 percent Research Assistant (writing, coordinating, and disseminating) = $60,000; 25 percent of a Webmaster or contractor = $25,000.
