Coordination of Care for Persons with Disabilities Enrolled in Medicaid Managed Care: A Conceptual Framework to Guide the Development of Measures. II. WHOSE CARE NEEDS TO BE COORDINATED?


In an ideal health care delivery system, the care of all patients (indeed of everyone in the nation) would be coordinated. This would happen because the system was structured, financed and operated to achieve coordination as a matter of course, for everyone.2 We do not have an ideal health care delivery system today, and we are unlikely to achieve such a system in the short or mid-term. Today's system is fragmented organizationally, financially, technologically, and in terms of the approach taken by various clinicians in providing medical care and linking it to other health and social services in the community. This project, therefore, focuses on care coordination for a specific group of people, those with disabilities, who are viewed as especially vulnerable to problems that arise when care is uncoordinated. We operate, therefore, in a context in which, whether we like it or not, care coordination will have to compensate for and overcome, wherever possible, the fundamental dysfunction of today's fragmented health care system. At the same time, however, we hope that our work will move toward, though it cannot fully achieve, the institutionalization of structures, processes, and commitments to outcomes that will enhance care coordination for all of us (Siegel 1996; Committee on Children with Disabilities 1999; Ronder1999).

Since we are working toward measures for a specific population, we need to specify the "denominator," those whose care coordinationare our primary concern at this time. Legal definitions will be problematic. For instance, the Balanced Budget Act (BBA) definition of Children With Special Health Care Needs is:

  • receive SSI;
  • eligible under 1902(e)(3)2;
  • in foster care; receiving foster care or adoption assistance (Title IV-payments); or
  • receiving Title V-funded care coordination services.

Problems with the BBA definition are that it misses children who qualify for Medicaid a different way, and that it cannot be used for a count because the five groups overlap. States interviewed for a NASSHP study (Colorado, Connecticut, Delaware, Massachusetts, Minnesota and New Mexico) reported it was more important for them to identify children in a way that allowed them to be engaged and tracked. In addition, states reported that they can identify children in all groups but Title V-funded care, because no system exists for communicating individual-level information from the Title V agency to the Medicaid agency. Thus, since legal definitions are not adequate, we must identify both the "inclusion" and "exclusion" criteria in conceptual terms.

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