Consumer Survey of Medicaid Managed Care

Alan R. Factor, Ph.D. Sharon Davis, Ph.D.
University of Illinois at Chicago, The Arc, 2002

What This Study is About:
The Arc and the University of Illinois at Chicago (UIC) are working together on a survey to find out how satisfied adults with developmental disabilities are with their Medicaid managed health care plans. We want to learn how satisfied consumers are with their doctor and whether they are getting the health care, special therapies and medical supplies they need. We want to know what people like and dislike about their health plan.

What We Have Done to Date:
The Arc identified several states which have adults with developmental disabilities in Medicaid managed health care plans for at least two years. These states include: Arizona, Oregon, Maryland, Tennessee, New Mexico, Michigan, Minnesota, California, Florida, New York, and Texas. The Arc and the UIC prepared a survey to find out how satisfied people in these states are with their Medicaid health plans. The Arc mailed these surveys to 8,000 members in these states. The Arc also put this survey on its web site so that people could download it, fill it out, and send it back.
The Arc received 403 surveys back and entered the data in a computer file. Because Rick Berkobien left The Arc for a new job,
The UIC has been analyzing the surveys of only those 161 consumers who have Medicaid managed health care and who do not have any other health insurance. By doing this, we could be sure they were only reporting about their Medicaid managed health care plan. We presented these results at The Arc’s 2001 Annual Meeting in October:
  • 40 surveys were completed by the person with a disability with assistance from a support person; 116 surveys were completed by a support person only and 5 surveys were completed by people with a disability without any support.
  • The people with disabilities who were in the survey ranged in age from 18 to 73. Their average age was 34. Most people lived with their families or in a community residence with 6 or fewer people.
  • 41% reported their health was excellent or very good.
  • Most people selected their Medicaid managed health care plan because the doctor was very good.
  • However, 32 people said they had a hard time reaching the doctor by telephone and 40 people said it was hard to get an appointment with the doctor when they needed one.
  • 35 people said their doctor didn’t no much about their disability;
  • 24% of the people who needed special medical supplies or equipment said their health insurance plans would not pay for them.
  • Peoples’ satisfaction with their primary care doctor was related to how much he knew about their disability and how much time he spent with them during an office visit.
  • Peoples’ satisfaction with their health care plan was related to the helpfulness of the information they received about the plan’s benefits before they signed up for the plan

How the RRTC Advocate Advisors Can Help:
  • The Advocate Advisors can look at the results and can comment on them. It will be especially helpful if the advisors live in one of the states we surveyed or if they know people in these states who can review and comment on the results.
  • The Advocate Advisors can tell us about any advocacy groups for people with developmental disabilities that are also looking at Medicaid managed care. We may be able to compare our results with what they know.
  • The Advocate Advisors can tell us what findings people with disabilities and their families are most interested in.
  • The Advocate Advisors can give advice on the best ways to present this information to people with disabilities, families, advocacy groups, service providers and policy makers.

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