Medicaid Managed Care: Health Care Benefits and Barriers for People with Disabilities

1. NRH Center for Health and Disability Research Medicaid Managed Care: Health Care Benefits and Barriers for People with Disabilities Gwyn C. Jones, Ph.D. National Association of State Health Plans Annual Meeting August 13, 2001

2. NRH Center for Health and Disability Research Collaborators and Funding • Bonnie O’Day, Ph.D. • Colleen Murphy-Southwick, Ph.D. • Funding • National Institute on Disability and Rehabilitation Research (NIDRR), U.S. Dept. of Education, Grant #H1133B70003 • Rural Rehabilitation Research and Training Center (RRTC) on Rural Rehabilitation Services and Disability at the Montana University Affiliated Rural Institute on Disabilities, University of Montana, Missoula, MT, Grant #H133B970017.

3. NRH Center for Health and Disability Research Objectives • To identify the benefits and barriers to quality healthcare in Medicaid managed care programs for persons with disabilities. • To develop policy recommendations for state Medicaid program planners that foster the delivery of quality healthcare services for Medicaid beneficiaries with disabilities.

4. NRH Center for Health and Disability Research Methods • Contacted all 50 states by phone for Medicaid program information, for people with disabilities and reviewed relevant literature on Medicaid managed care. • Developed a semi- structured interview questionnaire for each identified stakeholder group in 3 targeted states. • Conducted and tape recorded on-site interviews and follow-up conference calls over a two-year period with multiple stakeholder groups in each targeted state. • Coded each tape transcript and set of field notes thematically on disability issues for stakeholder groups, after multiple readings of the printed data. • Summarized findings and developed Medicaid policy recommendations specific to people with disabilities

5. NRH Center for Health and Disability Research Medicaid Program Characteristics of Participating States • Delaware -Diamond State Health Plan • Two network HMOs • State handles pharmacy component • Long-term (integrated) care component under development • New Mexico - SALUD! • Three network HMOs • HMOs handle pharmacy component • No managed long-term care program for people with disabilities • Texas - Star+Plus • Three network HMOs • Long-term care component for people with disabilities • State does pharmacy component

6. State Medicaid officials Federal Indian Health Service officials HMO administrators, medical directors, care coordinators, and other staff Quality assurance people Enrollment brokers Representatives from community-based public health and social service agencies Representatives from advocacy groups Consumers with disabilities and their families NRH Center for Health and Disability Research Major Stakeholders

7. NRH Center for Health and Disability Research Benefits of Medicaid Managed Care for People with Disabilities • Case management • Individualized health care plans • Continuity of health care • Value added services, such as adult dental care and home modifications • Assistance with obtaining needed community services, such as electricity or telephone service.

8. NRH Center for Health and Disability Research Difficulties Experienced by People with Disabilities in Medicaid Managed Care • Information flooding • Paucity of consumer input during initial program development • Enrollment and health plan information, including websites, not available in alternative formats • Difficulty finding doctors knowledgeable about disability • Difficulty getting specialty referrals • Difficulty getting needed home health services, medical equipment and prescription drugs before initiating an appeal • Transportation problems, especially in rural areas • Inaccessible Medical facilities

9. NRH Center for Health and Disability Research Difficulties Experienced by People with Disabilities in Medicaid Managed Care (Continued) • Language barriers, including American Sign Language (ASL) • Failure to access available services because of cultural barriers • Enrollment brokers not knowledgeable about dual eligibility and disability issues • Confusion about appeals process • Uncertainty about covered benefits • Poverty • Paucity of doctors, health care facilities, and equipment vendors in rural areas

10. NRH Center for Health and Disability Research Recommendations • All enrollment and health plan information should be available in alternative formats, such as large print or audio cassette. • Medicaid HMOs should consider incorporating a social service component or community linkages into care coordination for people with disabilities. • Enrollment brokers, care coordinators, and medical practitioners should receive disability and culturally specific training.

11. NRH Center for Health and Disability Research Recommendations (Continued) • In-plan medical facilities and offices should be disability accessible, including access to examination equipment. • Federal Medicaid regulations should allow for increased cost of service delivery in rural areas. • Medicaid HMOs should consider alternative vehicles for service delivery, such as mobile clinics or contracts with providers across state lines, in remote • rural areas.

12. NRH Center for Health and Disability Research Implications for Health Policy and Health Care Service Delivery • People with disabilities have an increased risk for developing preventable secondary conditions that can increase disability and diminish their health, independence, and quality of life, if they fail to receive timely intervention. • State officials and health plans providing care for Medicaid beneficiaries with disabilities can surmount communication, social, economic, cultural, and geographic hurdles through creative networking with consumers and their families, and community providers, and social service agencies.