Managed Care & Persons with Disabilities & Chronic Illnesses

Consumer Needs & Preferences

This session served as a complement to the survey data presented in the previous session by focusing on the needs and expectations that persons with disabilities and their families have with respect to managed care.

Julie Beckett of Family Voices, a grassroots organization of families of children with special health needs, spoke about the vital role that families play in meeting the needs of these children and emphasized the importance of managed care working in partnership with these families. She also discussed critical concerns about the capacity of health plans to meet the needs of these children, issues about the adequacy of benefits, and the need to collect information to determine which approach works and which doesn't and to direct resources toward assuring positive outcomes.

Betsy Laitinen, the Manager of Member Services at the Community Medical Alliance, then spoke of her own experiences in getting the health care system to appropriately address her disability-related health care needs. She described a number of factors she considered as key to providing appropriate care for people with disabilities. They included:

• Having disability expertise.
• Involving the individual in care planning.
• Emphasizing information and prevention.
• Providing flexibility and recognizing that standard delivery methods don't always work.
• Ensuring the availability and access to appropriate services and coordinating these services as part of a whole disability care plan.
• Emphasizing creativity, resourcefulness, communication, and understanding.

Allan Bergman of the Institute for Disability and Managed Care emphasized a key point made in this session: It isn't that managed care cannot serve persons with disabilities well, it's just that our experience is limited and that systems need to change and adapt. He emphasized the importance of respecting individual choice in making decisions about plans and primary care providers and of managed care services being accessible and convenient. Where managed care cannot meet these conditions, exemptions should be considered.

Mr. Bergman raised a number of other challenging issues that must be addressed, including:

• Decisions about the appropriate amount, duration, and scope of services.
• Delegation issues.
• Needed improvements in the development of practice guidelines and clinical protocols.
• The need to have mechanisms in place to address problems that may arise.
• The need for managed care plans to understand key concepts central to meeting the needs of persons with disabilities in an appropriate and effective fashion.

He closed by emphasizing the importance of the provisions of the contracts between Medicaid agencies and health plans, especially the definition of medical necessity.

References

Family Voices. Children with Special Health Care Needs In Managed Care: Questions To Ask and Answer. Managed Care Questions 95. January 12, 1996.

Family Voices and Brandeis University. Family Partners. Federation for Children with Special Needs.

Family Voices. Family Voices Discusses: Managed Care. January 1996.

Family Voices. Summary Report on the Family Voices Managed Care Survey. Federation for Children with Special Needs, June 1997.

The ABC's of Managed Care-Standards and Criteria for Children with Special Health Care Needs was initiated and developed by members of the National Coalition for Family Leadership at the Egg Harbor Family Summit, September, 1995.

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