In recent years there has been growing attention to the relative differences in access, quality, and costs of long-term services and supports (LTSS), especially community LTSS, for persons with different types of disabilities. These differences are attributed to various factors, including differences in the amounts of needed support and in the accepted approaches to support as well as relative effectiveness of advocacy on behalf of different constituencies and others. The interactions of such factors have led to actual and/or perceived differences among “disability groups” in access to and quality of LTSS that have been questioned in terms of fairness and appropriateness. In a discussion of these issues and their implications, Kane, Priester, and Newman (2004) observed that, “From a social justice perspective, it is not immediately apparent why different groups of persons with disabilities should be favored” (p. 16). Although perspectives may differ on whether the perceived differences in access, quality, and costs of LTSS represent social injustice, there is a general impression, not entirely without supporting evidence, that among the various “groups” of persons with disabilities who may need LTSS, persons identified as having ID/DD fare relatively well. There are two principal aspects to the perceived discrepancies in LTSS between persons with ID/DD and other Medicaid recipients with disabilities. One is that people with ID/DD have “favored” or at least disproportionate access to Medicaid LTSS funding in general; the other, that people with ID/DD are particularly favored in their access to community-based LTSS. Statistics presented below relate to such perceptions. As Kane et al. (2004) stated outright, “The large discrepancy in public support for community-based care between MR/DD and aging can be directly traced to persistent efforts of MR/DD advocates (pp. 13–14).
Figure 1 shows patterns of growth between FY 1993 and FY 2003 in Medicaid LTSS expenditures for persons with ID/DD, specifically for Medicaid Home and Community-Based Services (HCBS) and Medicaid Intermediate Care Facility for the Mentally Retarded (ICF/MR) services, along with patterns of growth for all Medicaid expenditures for institutional and community LTSS. Between 1993 and 2003, LTSS expenditures for persons with ID/ DD increased from $11.4 billion to $25.6 billion (125%), whereas all Medicaid LTSS expenditures increased from $42.1 billion to $84.5 billion (101%). In 1993, LTSS for persons with ID/DD made up 27.0% of all Medicaid LTSS expenditures; by 2003, they had encreased modestly to 30.3% of all LTSS expenditures. These differences are notable, but seem hardly the stuff of social injustice.
What seems more notable in comparing LTSS expenditures for persons with ID/DD and the total Medicaid LTSS expenditures are the substantial differences in the proportion of LTSS expenditures that have been committed to HCBS, as opposed to institutional services. As shown in Figure 2, in 2003, only 22.3% of the $84.5 billion spent on Medicaid LTSS was spent in HCBS programs. As a point of contrast, among LTSS programs for persons with ID/DD, 55.2% of expenditures were for HCBS; among all other LTSS programs, 8.0% of expenditures were for HCBS.
While Medicaid LTSS expenditures for persons with ID/DD increased between 1993 and 2003 at a rate not appreciably greater than that of overall LTSS expenditures, the growth for the HCBS portion of those expenditures was very much greater. Still, the relative distribution of HCBS expenditures for persons with ID/DD among all HCBS expenditures remained quite stable during the 1993– 2003 decade. In FY 1993, 78% of all HCBS expenditures were for persons with ID/DD; between FY 1993 and FY 2003, 74.5% of the increase in total HCBS expenditures (from $2.8 billion to $18.8 billion) was for persons with ID/DD; and in FY 2003, 75% of all HCBS expenditures were for persons with ID/DD. More notable than changing patterns was the maintenance of patterns. Similarly, the 9.8% of all Medicaid expenditures that went for LTSS for persons with ID/DD in FY 2003 remained in the range of 9% to 12% as it has for more than 20 years.
Table 1 shows levels of expenditures for various categories of Medicaid LTSS by state and for the US as a whole. It shows that nationally in FY 2003, 30.3% of all Medicaid LTSS went to support persons with ID/DD, including 75.0% of all HCBS expenditures, but only 17.5% of institutional expenditures (i.e., for nursing facilities and ICFs-MR). Patterns of LTSS expenditures among states tended to fall around the national averages, but with some notable variations. States varied in their proportions of all Medicaid LTSS expenditures that went to supporting persons with ID/DD, with 36 states falling between 25.0% and 39.0%, but with less than 25% in 8 states and more than 40% in 7 states. In all but 5 states most HCBS expenditures went to support persons with ID/DD, with 30 states falling between 60% and 90% and with more than 90% in 6 states. In all but 8 states, the total amount of Medicaid spending allocated to LTSS for persons with ID/DD was between 5.5% and 17.5%, with 4 above and 4 below. (Sources: Statistics for LTSS expenditures for persons with ID/DD are from R. Prouty, G. Smith, and K.C. Lakin (2004, June). Residential services for persons with developmental disabilities: Status and trends through 2003. Minneapolis: University of Minnesota, RTC on Community Living; Statistics on all Medicaid and Medicaid LTSS expenditures are from B. Burwell, K. Sredl, and S. Eiken (2004, May). Medicaid long-term care expenditures in FY 2003. Cambridge, MA: MEDSTAT. Modest amendments have been made to statistics appearing in cited reports based on subsequent updates from reporting states. The authors greatly appreciate the assistance of Brian Burwell of MEDSTAT in the preparation and review of the Medicaid LTSS expenditure statistics presented.