U.S. Department of Health and Human Services

An Analysis of Federal and State Policies Affecting Services to Mentally Retarded and other Developmentally Disabled Persons: State Perspectives Final Report

Executive Summary

Tecla Jaskulski and Rebecca Weader

Macro Systems, Inc.

July 1987

This report was prepared under contract #HHS-100-84-0035 between the Department of Health and Human Services's Office of Social Services Policy (now known as the Office of Disability, Aging and Long-Term Care Policy) and Macro Systems, Inc. For additional information about the study, you may visit the DALTCP home page at http://aspe.hhs.gov/daltcp/home.htm or contact the office at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, SW, Washington, DC 20201. The e-mail address is: webmaster.DALTCP@hhs.gov. The DALTCP Project Officer was Margaret Porter.

The opinions and views expressed in this report are those of the authors. They do not necessarily reflect the views of the Department of Health and Human Services, the contractor or any other funding organization.

1. PURPOSE OF THE STUDY

The Developmental Disabilities Act of 1984 required the Department of Health and Human Services (HHS) to submit a report to Congress on improving services to mentally retarded and other developmentally disabled (MR/DD) persons. That report, prepared by the Assistant Secretary for Planning and Evaluation (ASPE), Office of Social Services Policy, recommended the establishment of an intradepartmental Working Group to develop cost effective Federal policy options for enhancing independence, productivity, and community integration for MR/DD people.

The purpose of this study is to provide information to the Working Group on the impact of Federal programs and policies on state policies regarding community-based services (CBS) for MR/DD people. The objective of the investigation and analysis was to develop an understanding of the factors which influence state policy choices and the environment that is created for implementing Federal policies and programs at the state level. The study identifies those factors, especially those relevant to Federal policy, which either encourage or inhibit the development of services that promote autonomy and integration for MR/DD people and minimize inappropriate institutionalization.

2. METHDOLOGY

This report presents the results of an in-depth review of six state MR/DD service systems. To obtain an understanding of the elements which play a critical role in state policy, decisions regarding the degree of emphasis to be placed on CBS, it was decided to focus on the two ends of the CBS "continuum." Colorado, Michigan, and Nebraska (hereafter referred to as high-CBS emphasis states) were selected as states which have developed extensive CBS systems. Illinois, Texas, and Virginia (low-CBS emphasis states) provide the perspectives of states which continue to rely heavily on institutional services. Factors used to classify states in relation to their relative emphasis on CBS included: the distribution of expenditures between CBS and large public residential facilities (PRFs); the population in PRFs and small (15 beds or less) community residential facilities (CRFs); and trends in the reduction of the population in PRFs. State characteristics, such as population size and geographic location, also were considered in the state selection process.

Data collection and analysis emphasized discussions with key policy makers and program operators in each of the six states, as well as a review of relevant documents and reports supplied by the state informants. A profile of each state system was developed to serve as the primary instrument of analysis for a cross-state comparison.

3. MAJOR DETERMINANTS OF STATE POLICIES

The analysis of state MR/DD service systems reveals that state policy decisions and the state's overall emphasis on CBS are the results of the interaction between a complex array of factors specific to individual state's political and MR/DD service systems and the requirements and incentives imposed by Federal programs and policies. Although Federal policy is not the primary influence on state policy decisions, it does play a fundamental role in the financing and delivery of MR/DD services on the state level.

Colorado, Nebraska, and Michigan demonstrate a strong philosophical commitment to CBS, and have translated that philosophy into concrete policy. Michigan's orientation toward CBS reflects, in part, a traditionally strong commitment to human services. Advocates for CBS in Nebraska and Colorado were able to articulate the importance of CBS in terms of their states' conservative political values which emphasize individualism, independence, and local control. The high level of philosophical commitment in these three states created an environment conducive to CBS development. The three high-CBS emphasis states also benefited from the presence of strong, well-organized advocacy for community services. Several respondents in the low-CBS emphasis states cited the lack of effective advocacy as barrier to the development of CBS.

Although a political commitment to CBS and the presence of able and dedicated individuals are essential to the development of CBS, these factors are not sufficient for such development. A variety of other internal and external factors also appear to influence whether and how CBS develops in a particular state. For example, although community-level service delivery systems and a high degree of community involvement appear to be crucial to CBS implementation, their presence does not guarantee CBS development.

The health of a state's economy also is an important factor affecting state support for MR/DD services, especially in the Initial stages of the move toward an emphasis on CBS. Respondents in two of the three high-CBS states reported that the major expansion of CBS coincided with periods of economic prosperity in the state. Economic difficulties can have one of two effects on CBS development: scarcity of resources may encourage a state to consider less costly alternatives to institutional care; and, conversely, a shortage of funds may prevent a state from developing new services. Financial issues are a major concern, especially for the low-CBS-emphasis states which are struggling with pressures to expand CBS while maintaining service quality in large PRFs.

Federal policy has been critical to the development of CBS, but factors internal to individual states shape the nature and degree of Federal influence. For example, the ability to use Federal funds to finance CBS was an enabling factor for the three high CBS states--the availability of Title XIX funds and the Title XX Social Services Block Grant made CBS development possible. However, faced with the same alternatives, other states chose to continue to rely on institutional services. States' responses to the original Medicaid Intermediate Care Facility for the Mentally Retarded (ICF-MR) regulations illustrate another aspect of Federal influence: in two of the three high-CBS states, the regulations were explicitly cited as an additional impetus for the depopulation of PRFs; in the three low-CBS states, the investments in PRFs associated with complying to Federal standards are seen as an important barrier to CBS development.

4. IMPLICATIONS FOR FEDERAL POLICY

State perspectives on the impact of Federal policy focused on: the limited availability of funding; the relative inflexibility of federally funded programs; ambiguities and inconsistencies across the myriad of Federal programs serving the MR/DD population; and the perceived absence of clear and consistent policy and leadership on the Federal level. In general, state respondents were likely to describe Federal policies and programs, with the exception of the Home and Community Based Care waiver, as barriers to the development of individualized, integrated, nonmedical service models. This tendency is partially due to the heavy dependence among five of the six states examined on the ICF-MR program and other Medicaid funding to finance MR/DD services. Respondents in all of the states supported CBS objectives, such as increasing independence and productivity for MR/DD people, but felt that overall Federal policy and programs (especially ICF-MR) are oriented toward facility-based, medical/institutional models.

State responses to specific Federal policy changes are difficult to predict. However, several themes emerge from respondents' perceptions of current Federal programs and suggestions for future policy changes:

• States would be receptive to changes which would increase their flexibility to use Federal dollars for CBS, but would be reluctant to accept reduced Federal financial participation (FFP) in exchange for increased flexibility.
• A combination of the various Federal-funding streams would probably be attractive to states, although interagency turf battles at the state level might develop.
• Some type of preferential funding for CBS would probably be favorably received if such changes incorporate incentives for future expansion of CBS rather than penalties for choices made in the past.

The potential for Federal policy to encourage a greater emphasis on CBS, as well as the development of service models which facilitate community integration and independence for MR/DD individuals, is significant. State respondents repeatedly stressed the need for a clear, unequivocal Federal commitment to CBS, accompanied by programmatic guidelines and funding mechanisms which are consistent with that philosophical commitment.

Federal policy changes can perhaps make the greatest impact in states such as Virginia, Illinois, and Texas. These states want to expand CBS and have already begun to do so, but the size of their institutional populations and their relative lack of CBS experience will hinder expansion efforts. Federal involvement in technical assistance and service system development, in addition to financial assistance and strong leadership could be highly effective in increasing community service options for MR/DD people.