Coordination of Care for Persons with Disabilities Enrolled in Medicaid Managed Care: A Conceptual Framework to Guide the Development of Measures. B. What Are The Potential "Exclusion" Criteria For Those Whose Care Needs To Be Coordinated?


1. Member's Needs for Medical Care, in Particular, are Not Significantly Different from the Average Person in Their Age and Gender Cohort

This and other exclusionary criteria are, to some extent, the "flip side" of our inclusionary criteria. Thus, we believe the denominator should, if possible, exclude some of the people with disabilities whose medical care needs, in particular, are fairly typical of people in their age and gender cohort (Jha, personal communication). However, such individuals may need accommodations to their conditions as well as assistive devices. It may be important to ensure that their primary care provider understands and is comfortable working with a person with disabilities. If they need substantial coordination of non-medical needs such as needs for transportation, housing, special education or personal assistance (Henningsen, personal communication) this coordination may appropriately take place within a health care setting, especially since attention to these needs may prevent medical problems in the future. Indeed, it may be very important that the health care system be willing and able to coordinate with other human services systems (Weiss 1986).

2. Member's Condition is Stable and Expected to Remain Stable Over Time

Another indicator that the person may not need care coordination is that their disability or disabling condition is stable and expected to remain stable over time. Thus, the need for ongoing tracking and follow-up does not exist (Jha, personal communication). However, that a condition is stable for a period of time does not mean it will remain stable. The person and/or their family may need access to care coordination sometimes, such as in emergent situations.

3. Person and/or Family Prefers to Coordinate Medical Care and Related Social Services themselves and Appears Able to Handle Coordination Tasks Effectively

Independence and autonomy are highly valued by many people with disabilities and their families. Given the fragmentation of the health care delivery system, many have become genuine experts in how to coordinate medical and social services for themselves or their loved one. They may prefer to continue carrying out these tasks themselves, be confident of their ability to do so, and be able to document a "track record" to prove it. They may believe that their circumstances will be less fully understood and their preferences given less weight by a "professional" in care coordination (Wehmeyer 1993). So we must ask the question, should individuals with disabilities and their families be their own care coordinators (Ronder 1999)?

First, note that a significant subset of people who want to and can handle their own care coordination may meet one or both of the first two exclusion criteria we discuss. However, there are also going to be people with quite complex and dynamic needs who want at least to take the lead in the coordination of care for themselves or a family member. We would argue that even if the primary or lead responsibility for care coordination is not "in the system" but rather "in the patient" it may be important to include such individuals in the denominator for care coordination measures. We still need to ensure that the patient's needs are actually being met, especially if they change over time.

Further, we argue that people need access to formal care coordination and to periodical review of whether or not needs are being met and how rules/service changes and new resources affect their care. In addition, families and persons with disabilities may need formal care coordination in specific circumstances, such as when emergencies arise; when "burnout" is imminent; when the "system" poses active barriers to patient and family initiatives that they cannot handle on their own; and when the circumstances of the family member or patient are affected by changes in health status, employment or other events. Finally, we believe it is important for the patient and family to know that back-up assistance from formal care coordination systems is available, in order to encourage them to play this role over time.

Thus, we incorporate into the concept of care coordination the notion that the preferences and the resources of the patient and/or the family need to be taken into consideration in the process of care coordination (see Section VI below) (Mack, personal communication; Moore, personal communication; Ziring, personal communication).

4. Member Already has Access to a Coordinator of Services, Including but Not Limited to Medical Services, as a Consequence of Eligibility for Other Federal or State Programs

Especially for children with special health care needs, other programs exist (e.g., maternal and child health programs, Individuals with Disabilities Education Amendments [IDEA], Title III of Ryan White) for which children eligible for Medicaid may also be eligible. These programs may assign a care coordinator for the children in their program. In some cases, theresponsibilities of this care coordinator goes across systems of care. When this is the case, is it likely that the care coordination function in Medicaid managed care would be duplicative? Clearly, we do not want to reproduce a system in which clients have multiple care coordinators who then need to be coordinated. We also do not want a situation in which, because there are multiple care coordinators, no one takes real responsibility for assuring that care is in fact coordinated. The roles and boundaries in these circumstances will need to be carefully defined (Schneider 2000) so that someone is identified as overall coordinator.

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