Abstract

Self-determination has been a dominant theme in the movement for the enhancement of the lives of adults with developmental disabilities, but who actually chooses the careproviders funded by state and federal dollars? Officials from all 50 states were interviewed to ascertain who chose the careprovider for youth transitioning from educational to adult services for each year from 1992 to 2004. The choices fell into roughly three levels: state-dictated, restricted individual choice, and unlimited individual choice. The highest level of choice offered in that state for a given year was tracked. The change in level of choice has been dramatic. In 1992, government dictated all careproviders in 42 states; by 2004, this was reduced to 9 states.

Who chooses the service providers for adults with developmental disabilities whose services will be covered through state and Medicaid Waiver funding? Though almost always far from the public eye, the level of choice of provider offered to adults with developmental disabilities is important. With public funding levels for residential and day programming for this group at about $35 billion in 2002 alone, the amount of money involved is substantial (Braddock, 2004). In addition, the choice of service provider has important consequences for the quality of life of the more than 400,000 adults with developmental disabilities who receive government-funded services in this country (Braddock, Hemp, Rizzolo, Parish, & Pomeranz, 2002). The question of who chooses the service providers, specifically for those transitioning from schools into the adult developmental services' state-funded systems for the first time, was examined here.

Until the 1970s when federal class action lawsuits forced the provision of community-based services for many previously institutionalized adults, of course, the states themselves were almost always the exclusive providers of services for this population. In 1990 and 1991, changes in Medicaid policy made it more practical for states to seek funding for residential services outside institutions through Waivers, which permit the targeting of specific groups and regions (Brown, Lakin, & Burwell, 1997, p. 25; Parish, 2001, p. 14). By 2002, almost half the $22 billion then spent on residential programs was devoted to community-based programs housing 15 or fewer residents, outside the large institutions (Braddock, 2004). In spite of the lack of any federal mandate dictating who chooses the service providers and little apparent public pressure, tremendous change has taken place in who makes that selection.

In this study we have identified the highest level of choice of provider offered to adults with developmental disabilities in each state every year from 1992, when any Medicaid funds were first sent to any states through the Community Supported Living Arrangements Program to help fund community-based services, to 2004 (Brown et al., 1997). Examination of selection of providers is complicated by the range of idiosyncratic policy approaches specific to individual states. In broad outline, however, states fall into three main categories during this period. At the basic level, state-dictated provider, the state dictates the approved provider for each person authorized to receive services. Since 1992, most states have moved in the direction of more consumer-choice–oriented systems. Two main variations have emerged. First, in most states groups or all of the consumers with developmental disabilities may select a provider from a list of state-approved organizations, or restricted individual choice. The second approach offers eligible individuals the opportunity to use state and Medicaid Waiver dollars to choose virtually any provider, unlimited individual choice, whether a private nonprofit organization or for-profit corporations or an individual, such as a neighbor who might be hired to come in and provide personal hygiene assistance. The pattern in changing approaches to provider selection is not necessarily the same for all adults with developmental disabilities receiving funded services in any given state at any given time. States typically request particular Medicaid Waiver program coverage for only individuals with specific diagnoses in specific geographical areas in specific need or age categories.

Method

These data about how much choice each state has offered consumers with developmental disabilities transitioning from educational to adult services were gathered through telephone interviews that I conducted with the directors of adult developmental disabilities services, or their designates, in all 50 states. The states differ in the organization of their adult developmental disabilities services. Some are free-standing departments or divisions; some are parts of health departments or departments jointly serving senior citizens; the variety is substantial. For the purposes of this study, the developmental disabilities services were located through links from the website of the National Association of State Directors of Developmental Disabilities Services (NASDDDS). For each state, that office was telephoned to determine the name and title of the individual serving as full or acting chief executive officer. Those individuals were then mailed an invitation to participate in this study or to designate another respondent. In most cases many follow-up contacts took place, whether to schedule the telephone interview, contact additional individuals to verify data for years before the tenure of the main respondent, or to obtain additional information. In the end, all 50 states graciously cooperated and granted telephone interviews during the period April–June 2004. Though the specific titles varied, the states' respondents ranged from director of developmental disabilities services (34%), the associate/assistant director (26%), the director of community services (16%), and the director of program development or contracts (8%), to a range of miscellaneous positions for the remaining 8 states.

In this study I focused on the states' actions regarding the specific group: transitioning youth with developmental disabilities. This group of citizens was selected in order to obtain good insight into the way states choose to select service providers. For this group, the states have had the opportunity to identify individuals who will be future program participants through their years in educational services. States have time to develop individualized plans for these young adults, unlike the situation for older adults who may have been living with their parents for decades without receiving any services and suddenly are dropped on the state's doorstep when those aged careproviders die or become incapacitated themselves.

The telephone interviews focused on the question, “When a young person with developmental disabilities turns 21 and first starts receiving adult services funded by the state, how is the service provider selected?” Follow-up probes were used to determine whether individuals and their families made the decision and the range of alternatives from which the chosen service provider could be selected. After the current approach(es) was outlined, I asked how long this approach had been used and what the previous approach had been. This was repeated until the data were obtained for the years beginning 1992, when federal funding was first available to states for community-based programs. The average length of telephone interview was one hour. The interviews could not be short because the responses were complex. Most states offer varying levels of choice for transitioning youth currently and/or in the past decade. The variation exists primarily because of different relationships between state and local governments (some states maintain central control, others delegate most of the decision-making to county or regional representatives) and because of different specific Medicaid Waiver agreements (some states target different disabilities, ages of the individual or that person's home careprovider, or geographic groups for particular Waivers). For the purposes of this analysis, I used the highest level of choice offered to any substantial group. (Outliers of 4 or fewer individuals were disregarded as being unrepresentative of the state's overall intent.) Though it is possible that the datum for a specific group of individuals in a specific year in a specific state was not recalled flawlessly, the general pattern of the responses suggests overall reliability. I confirmed the salient points of the discussion in follow-up letters to the respondents.

The interview responses were then analyzed to determine the highest levels of choice offered to transitioning youth each year from 1992 to 2004. The flow of funds associated with an individual placement determined the level recorded. For example, at the state-dictated provider level, the respondent would have indicated that funding is linked to the number of slots a service provider has been allocated and that the dollars would not automatically follow the individual if that person wished to change provider.

The designation individual choice was applied only when the funding followed the transitioning youth. The allocation was for the individual and not determined by a contract for a specific number of slots guaranteed to the service provider. This is a market-based approach in which the consumer determines the alternative on which the money will be spent. The difference between restricted individual choice and unlimited individual choice was based on the range of alternatives available. If the options were limited to a list of state-approved providers, the designation was restricted individual choice. If the options were essentially open-ended, whether the level of care is any nursing home or assistance from any individual who is not a parent or spouse, for example, the designation was unlimited individual choice.

Results

In the period 1992–2004, the number of states offering specific groups of young adult consumers with developmental disabilities the opportunity to choose their service provider increased from 8 to 41 states. Most of the states offered individual choice restricted to those providers that had state approval. A small but increasing number of states have extended the level of consumer choice to include providers who are not on a state-approved list. As indicated in Figure 1, government officials in more than 80% of the states selected the service provider in 1992, the first year that any Medicaid Waiver funding was available for community-based residential services for adults with developmental disabilities. Within 5 years, in 1997, this innovation had spread to half the states, without any federal mandate.

Figure 1

Level of choice offered by states, 1992–2005

Figure 1

Level of choice offered by states, 1992–2005

This change tended to spread by regions. As can be seen in Figure 2, in 1992 only 2 states east of the Mississippi River and 4 contiguous Mountain and Great Plains states offered individual choice. (Nebraska offered some unlimited individual choice, the others restricted individual choice.)

Figure 2

Map of states' highest level of choice for young adults transitioning into adults services in 1992

Figure 2

Map of states' highest level of choice for young adults transitioning into adults services in 1992

By 1997, 5 years later, half the states offered individual choice. A prevailing pattern emerged in which individual choice spread to contiguous states. The change came largely in regional blocks, beginning in the Midwest and East in 1994. By 1997, regional patterns emerged clearly (see Figure 3). The pattern of 3 or 4 states moving to individual choice each year continued through 1999. By 2000, 33 states were offering restricted or unlimited individual choice to at least some of the transitioning youth.

Figure 3

Map of states' highest level of choice for young adults transitioning into adult services in 1997

Figure 3

Map of states' highest level of choice for young adults transitioning into adult services in 1997

The pace of change then slowed from 2001 to 2004. Many of the 8 states who offered either level of individual choice for the first time during this period made the change in contiguous pairs (Arizona and New Mexico in 2002; Minnesota and Iowa in 2002 and 2003, respectively) or joined the surrounding states who had changed some years earlier (Alabama and South Carolina) (see Figure 4). Those states that continued not to offer individual choice by 2004 also tended to fall in regional groups in the East or Western North.

Figure 4

Map of states' highest level of choice for young adults transitioning into adults services in 2004

Figure 4

Map of states' highest level of choice for young adults transitioning into adults services in 2004

In summary, the states can be divided into four basic change cohorts in this policy area in the period 1992 to 2004. The 10 early changers first offered individual choice of service provider by 1993 (see Table 1). The 23 middle changers made the transition to offer individual choice to at least some transitioning youth in the period 1994–2000, the time of greatest shift. The spread of this innovation slowed from 2001 to 2004, when 8 states adopted it. By 2004, 9 states remained in the no-change group.

Table 1

States by Change Cohort, Based on the First Year Any Consumers of Adult Developmental Disabilities Services Could Choose the Service Provider

States by Change Cohort, Based on the First Year Any Consumers of Adult Developmental Disabilities Services Could Choose the Service Provider
States by Change Cohort, Based on the First Year Any Consumers of Adult Developmental Disabilities Services Could Choose the Service Provider

The states offering individual choice fell predominantly into the restricted category. However, the pattern of regional change held true also for the 7 states that offered unlimited individual choice to some transitioning youth in 2004. Most of these were clustered in one region, New England. The other 3 states (Oregon, Alabama, and Minnesota) stood out because they went from the lowest level of choice, state-dictated provider, to the highest level, unlimited individual choice, with no intervening step.

Discussion

The results of this study add to the understanding of service delivery for adults with developmental disabilities. Patterns of residential service delivery in the states have been documented carefully since 1982, through the federal Developmental Disabilities Act, with funding as a Project of National Significance by the Administration on Developmental Disabilities of the Department of Health and Human Services (Braddock et al., 2002). However, most of this work has been focused on the numbers served and cost levels rather than levels of the choice offered individuals about the service provider (Braddock, 2002; Braddock & Fujiura, 1987, 1991; Braddock & Hemp, 1986, 1997, 2000, 2002; Braddock & Parish, 2002; Lakin, 1998). The main themes that have emerged are (a) the variation in the levels of residential service provision by state and over time (Braddock et al., 2002); (b) the importance of litigation in the increase in the supply of community beds (Smith, 2004); (c) the predominance of the numbers of institutional beds over community beds, though the latter are increasing over time (Brown et al., 1997; Stancliffe, Emerson, & Lakin, 2001); (d) length of waiting lists for residential services (Lakin, 1998); and (e) the benefits of community beds over institutional beds for the residents (Kim & Larson, 2001).

This study offers an additional perspective through which to explore the changing state of services. Building on this would be an exploration of the possible predictors of states' decisions to offer specific levels of choice of provider. Investigation of the variation in the levels of choice offered to transitioning youth with different disabilities, as well as the levels of choice offered to adults with developmental disabilities who are older when they enter the service-delivery system or adults who have been receiving state-funded services for some time, would also be useful. Another constructive direction for future research would be determining whether senior staff members in the central office are correct about what happens in practice. Determination of exactly who made the decision—whether the individual person who would be receiving the services or the family or advocate—is beyond the scope of this study but is a critically important question that warrants future research. Replication of this study but in greater detail in chosen states would be valuable. The overview offered in this study necessarily obscures important, rich variation and detail. Reporting the nuances of the variations would be a useful direction for future case studies.

The implications of this pattern of states moving quickly in the direction of market-based, individual choice of provider for some transitioning youth with developmental disabilities are important for a number of different constituencies, including the transitioning youth themselves and others who are likely to be part of the selection process, such as their families, the state Departments of Education, and the provider organizations. Future study is needed to determine the impact of the emerging patterns of change for them.

Increased individual choice transfers key responsibilities from state administrators to the young adults and their families. As individuals and their families gain an increased role in analyzing alternate provider programs, it becomes important that they learn how to determine whether a program is likely to be a good match. State Departments of Education need to consider the changing locus of responsibility as they evaluate the standing curriculum. Simply adding “transition” to the agenda of Individualized Education Plan meetings may be inadequate. Further research is needed to assist state Departments of Education in examining their responsibility to help youth and families meet the challenges of their evolving responsibilities.

By the same token, moving from predictable cash-flows based on long-term contracts with states to the uncertainties of a market-based system represents a tremendous change and possibly a serious challenge for the service providers. Organizational systems in basic functions (such as “customer” identification, strategic planning, staffing, accounting, and board selection) may all require substantial change when the level of consumer choice changes. The increased importance of marketing and having “deep pockets” to sustain the organization through fluctuations in customer base size could favor service providers coming from the for-profit sector and could have a turbulent effect on the economic environment of service providers. Future research is needed to explore the practical implications of the emerging changes, if any, for service providers.

Limitations

A broad national swing toward consumer choice of service provider is documented here, but this study does have limitations. Among them is the source of information about the level of choice offered, the director of developmental disabilities of each of the states, and/or designee(s). Few states were able to provide information about the specific number of individuals who were offered a particular level of choice. In some cases this seems to have been due to faulty central office recordkeeping. In other states, the authority to determine the level of choice offered resided in specific regions or counties for some, but not all, of the service recipients; the central office, then, would have specific numbers for the level of choice offered for some parts of the state but not for others. For many states, this was not a piece of information that would be aggregated routinely for their state files. The level of choice offered individuals may not be recorded as carefully as the number of dollars spent on residential programming, for example, because auditors do not ask this question. The complexity of the variation in the governing structures of the different states also represents a limitation. The level of choice of provider is often not the same for all; variations exist in some states based on the part of the state and on the type and level of disability in the specific Medicaid Waiver agreement. The experience of transitioning youth may not accurately reflect the experience of other individuals entering the adult service system for the first time or that of longer term participants in state-funded services.

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Author notes

Author:

Ann Whitney Breihan, PhD (abreihan@ndm.edu), College of Notre Dame of Maryland, Business and Economics, Baltimore, MD 21210