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


1. "Aid" Status--SSI Eligibility

The immediate need for this framework and measures is to assess the performance of MCOs that contract with state Medicaid agencies to provide covered health care services to people eligible for Medicaid under one or more categories. Quite naturally, our attention is drawn, in particular, to people who are eligible for Medicaid because they have a disability that meets the criteria for Supplemental Security Income (i.e., the SSI disabled) (Davis 1996). The primary advantage of using this as a primary inclusion criterion is that the records of state Medicaid agencies do identify persons by aid category, although this information is not always available to the MCO in which SSI disabled persons enroll.

There are two disadvantages of using this as a primary inclusion criterion. First, it is likely that some people eligible for Medicaid under other aid categories also have disabilities. This includes adults and especially children enrolled under Temporary Assistance to Needy Families (TANF) and frail elders who "spend-down" and become dually eligible for Medicare and Medicaid (Moore, personal communication). Second, it is not clear that all persons with disabilities need care coordination services. For example, an adult with a sensory impairment such as blindness or deafness may be in quite good health and, furthermore, be both able and willing to take responsibility for whatever care coordination needs they have (Goldberg, personal communication).3

Although for purposes of immediate practical application of measures, the criterion of eligibility as an SSI disabled person may have to be used, by itself or in combination with other criteria. However, persons receiving SSI, those receiving Medicare, and those eligible for both Medicare and Medicaid, are different populations with different demographics. For instance, if we examine a profile of persons with disabilities receiving SSI (HCFA Review 1996, Volume 17, Number 4) we find that the primary disabilities for both children and adults are mental impairments (including mental illness, mental retardation, and developmental disabilities). These account for 57 percent of adults and 67 percent of children. Diseases of the nervous system and sense organs account for 13 percent of children and 25 percent of adults; diseases of the musculo- skeletal system account for 32 percent of adults and congenital abnormalities and respiratory diseases account for 8 percent of children. Ages of the SSI disabled population are as follows: of total SSI recipients, children less than 18 years old were 22 percent, adults 18-49 years old were 51 percent, and adults 50-64 years old were 26 percent.

In most states, those who are receiving SSI payments are automatically enrolled in Medicaid. States vary, however, in the extent to which they are enrolling their disabled populations in managed care for their acute care services. While we have extensive information about the characteristics of Medicare disabled, and those enrolled in managed care, we have less information about the disabled receiving Medicaid. We do know that the demographics of these two groups are different. For instance, the 41 percent of disabled Medicare recipients who are also eligible for Medicaid are more likely to have mental impairments and very low incomes.

Given the disadvantages we have noted in using SSI determination, we will discuss below the advantages and disadvantages of alternative, or additional criteria. A major disadvantage of all these proposed criteria is that they would require primary data collection efforts to identify, within an enrolled population, those who meet one or more criteria. A major advantage is that care coordination would be more carefully targeted to a population most likely to need and benefit from it, and that scores on performance measures would be more specific and sensitive, and therefore easier to interpret. For instance, mild to moderate disabilities may not fit SSI criteria for disability, but may require care coordination.

2. Functional Status as Indicated by ADL's and/or IADL's

A frequent suggestion in the literature, particularly in work that discusses the needs of the frail elderly, is that care coordination should be targeted at people who have limited functioning, and who are therefore both in need of a mix of medical and non-medical services and at risk, if they do not receive such services, of functional decline and long-term institutionalization. Care coordination (typically called case management or care management) has been a recurring element of attempts to provide home and community-based services as an alternative to institutionalization of the frail elderly (Eng 1997). Eligibility for such programs (and indeed for some aid categories) has been based upon the measurement of functional status as indicated by limits in the person's ability to perform the basic Activities of Daily Living (e.g., bathing, dressing, ambulating, transferring, eating) and/or Instrumental Activities of Daily Living (e.g., shopping, cooking, balancing a checkbook) (Pawlson, personal communication).

Instruments to assess functional status are available (Bergner 1976; Katz 1983; Reuben 1999). While the early development of such instruments focused on older adults, some work has been done on adapting the concept of functional status to special needs children and other groups of people with disabilities (Harris 1983; Granger 1993; Keller 1999; Msall 1999). It is not clear, based on the literature, that measurement of functional status is sufficiently specific for targeting care coordination. A number of studies and researchers note that experiments in home and community- based services for the elderly and other groups at risk for institutionalization have often failed to be effective (especially cost-effective) because they have not been well targeted (Weissert1998; Weissert, personal communication). However, if Medicaid enrollees in MCOs were screened for functional status, this would likely yield a lower "denominator" than the SSI disability criterion alone.

3. The Nature and Extent of the Person's Service and Support Needs, Based on Their Medical, Psycho-Behavioral Socio-Economic Circumstances

If we step back, for a moment, to examine why special care coordination efforts are important to an individual or group, given our current health care system, it is because:

  • They have multiple needs that cannot be met by a single clinician or by a single clinical organization (even if it is highly integrated) (Coleman 1979; Jessop 1994; Master 1996; Leutz1999); and/or
  • These needs are ongoing and their mix and intensity may well change over time (Johnson 1988; Blum 1991).

Multiple Needs:

Many, though not all, people with disabilities are likely to need services from at least one clinical specialist, and may need multiple specialists, as well as a primary care provider (Ziring1988; Meijer 1997; Mack, personal communication). For their health needs to be met, they may need special transportation services or require someone to accompany them to medical appointments. They may have behavioral health needs, either independent of or related to their disabling condition. They may need considerable educational support if they are to maximize their capacity for independent living and management of ongoing conditions. They may need durable medical equipment or other assistive devices. Their family and home environment may need attention in order to ensure that the person is safe, that their medical needs are taken care of, that adherence to medical regimen is feasible and likely, and to support autonomy. It is also essential to realize that clinical preventive services are needed by this population as well.

Ongoing and Dynamic Needs:

Most people with disabilities will have ongoing, in some cases life-long, needs for multiple services. However, these needs are not stable. It is not possible to do an initial assessment of needs, develop a plan to meet those needs and leave it at that. Many factors can result in changes in the mix or intensity of needs. These factors include changes in the underlying condition(s), normal development and aging, changes in the availability of technology, and changes in the life circumstances of the individual (Bulger, personal communication). For example, one or more of a person's health problems may be subject to periodic exacerbations that would require inpatient care at some level for some period of time. As a child with special care needs enters adolescence and young adulthood, their psycho-social needs (including needs for autonomy and responsibility) are quite likely to change, and their life circumstances and relationship to family may also change (Blum 1991). A new kind of assistive device may change what the person can do for themselves. Death or illness of a critical family caregiver, or a sudden decline in family cohesion, may also require changes in what is provided, and how it is provided.

A number of proxies have been suggested in the literature to identify people with multiple needs from clinical or administrative data, such as records of visits to multiple clinicians or for multiple diagnoses, records of frequent emergency room visits, and the primary diagnosis and site of recent inpatient stays (Nerenz, personal communication). These proxies may be useful "stopgaps" especially if they are monitored over time, but may not provide a comprehensive list of people with care coordination needs. An alternative is to regularly screen health plan members, or a subset of members defined by aid category, both at initial enrollment and periodically thereafter (Curtis 1999; Ronder 1999). Several attempts have been made by MCOs and integrated delivery systems to carry out such screenings; on occasion individual MCOs have developed screening instruments for this purpose. In other cases, a standard health and functional status assessment instrument such as the SF-36 has been used. We have yet to identify a screening tool that is widely accepted and used, and that addresses not only medical but psycho-social and environmental issues. If functional status is viewed as an appropriate inclusion/exclusion criterion for measurement, we will pursue this further.

4. Potential for Anticipatory Intervention to Reduce Risk of Institutionalization or Functional Decline

We have stressed that care coordination involves interaction with a person over time (Van Achterberg 1996). Care coordination should, we believe, provide a different, less episodic, context for interactions with the health care system. In fact, in addition to responding to emergencies and crises, effective care coordination has the potential for being anticipatory (Sandstrom 1996). Assessments can focus not only on current status, but on likely future courses, and identify interventions that can reduce the likelihood of functional declines, exacerbations, and consequent use of emergency and institutional services. Ideally, given our desire to target care coordination to those most likely to benefit, we should attempt to assess the potential for anticipatory interventions. Unfortunately, however, instruments of this kind do not exist at this time.

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