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Steven C. Hill, PhD, Center for Financing, Access and Cost Trends, Agency for Healthcare Research and Quality, 540 Gaither Rd., Rockville, MD 20850, 301-427-1672, shill@ahrq.gov and Judith Wooldridge, MA, Research Division, Mathematica Policy Research, Inc, P.O. Box 2393, Princeton, NJ 08543-2393.
People with disabilities face barriers to informed participation in health care. Those with mental retardation, visual impairments, and difficulty communicating best receive information through different media and styles. Mental illness can impede information seeking and decision making. We used a unique survey of Supplemental Security Income (SSI) recipients in Medicaid managed care to study informed participation. Most SSI enrollees chose their plan and provider, felt they had enough information to choose a plan, and rated information from their providers good or better. Most SSI enrollees received information to help them choose plans, and most were confident they could find out how to change providers. A minority did not know they could choose their plan and providers and reported poor or fair information from providers. Adults with mental retardation and mental illness were less likely to be informed participants. They relied less on formal information sources and more on family and friends, a source that was not associated with choosing plans or providers. Information from the state and plans, however, was associated with choosing plans and providers, rather than being assigned. Adults with serious difficulty communicating were less satisfied with information from providers. States, plans, and providers should tailor information dissemination to the diverse needs of people with disabilities. While most people with disabilities appear to be able to overcome barriers to receiving and using information to make health care decisions about plans and providers, greater efforts are particularly needed to assist people with mental retardation, mental illness, and communications impairments.
Learning Objectives:
Keywords: Disability, Decision-Making
Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.