Impact Feature Issue on Consumer-Controlled Budgets and Persons with Disabilities

Self-determination is both a movement and a mode of delivering services and supports to people with developmental disabilities. The impact of the movement has been widespread and is bringing about perhaps the most radical change in a generation in the way we think about people with developmental disabilities and the formal system vested with meeting their needs. To understand the nature of the changes, it is first important to understand the broad outlines of the concept of self-determination.

In 2002, a group of individuals who had been endeavoring to implement self- determination in their states and localities got together in Manchester, New Hampshire to share their experiences and to distill the lessons that they had learned. To frame the issues, the group began with a consensus statement regarding the “non-negotiables” of self-determination in practice. Their formulation provides a straightforward set of principles (Robert Wood Johnson Self-Determination Program Office, 2001):

• People decide what they want.
• There is support to people to make decisions.
• There are real options from which to choose.
• The process is simple and person-centered.
• With control comes responsibility.
• It is an approach – not a model, not a program.

One important and rapidly growing feature of administrative support for self-determination is providing persons with developmental disabilities and/or families with individual budgets that they control for the purchase of services and supports within established guidelines and with assistance as needed. The impact of this and other specific shifts in the service system on important outcomes for individuals is still somewhat difficult to determine given limited empirical information. However, data from the National Core Indicators (NCI) does suggest that immediate changes are taking place. The NCI is a collaborative performance monitoring system supported by the National Association of State Directors of Developmental Disabilities Services and the Human Services Research Institute. It assesses service and support outcomes for individuals with developmental disabilities and families in 20 participating states. Those individuals in the most recent round of data collection who were identified as having individual budgets (4212 out of 8065) were more likely to live independently; make choices about where they lived, with whom, and where; dictate their own schedules; take advantage of community activities; and know their case manager and to report that they received help from their case managers in securing services (HSRI, 2004).

To provide a platform for the exploration of how to embed self-determination principles into state developmental disabilities systems, the Robert Wood Johnson Foundation (RWJ) funded a 19-state demonstration initiative. A parallel evaluation of the effort was also funded. As part of the assessment of the systemic effects of self-determination conducted by the Human Services Research Institute, the following outcomes were identified (Bradley et al., 2001):

• Changes in rate structures. Significant changes have taken place in the way that services are funded – both during the RWJ demonstrations and subsequently. These changes include the development of individual budget methodologies in many states, the creation of individual service agreements, portability of budgets from provider to provider, and a shift to prospective rates based on cost ranges rather than retrospective of fee-for-service payments.
• Changes in the role of case managers. The evaluation of the RWJ demonstrations strongly suggested that the workload for case managers/service brokers in the initial stages of developing a consumer-directed set of supports was heavier than for traditional residential clients. The work involved in designing the supports, assisting the individual and/or his or her family to make decisions among options, the mobilization of supports, and the development of an individual budget was highly labor intensive.
• Changes in quality assurance. The emergence of self-determination has posed challenges to traditional quality assurance systems that are built on the assumption that individuals live in residential settings with continual staff support. Persons with individual budgets are more likely to be living by themselves, with their families or with one other individual and to be operating with sporadic rather than constant supports, and with support from sources other than paid staff. Conventional processes such as incident reporting, grievance mechanisms, and provider certification are not necessarily aligned with these highly idiosyncratic situations.
• Changes in demands on management information systems. In order to track the allocation of resources through individual, consumer-directed budgets, service brokers and program administrators need to be able to rely on information systems that are highly flexible and that allow for individual oversight as well as rapid shifts in allocation levels based on changes in individual circumstances.
• Changes in the mission and focus of self-advocacy organizations. The emergence of the self-determination movement has galvanized self-advocates and has provided them with a rallying cry.
• Changes in the management of provider organizations. Though not a universal change, many providers have begun to retool their organizations and to retrain their staff in order to recognize the unique capabilities of the people they support, and to support individuals to make decisions that guide the course of their lives.

The final test of any significant social movement is the extent to which it seeps into pubic policy. That threshold was crossed when the Bush administration launched its New Freedom Initiative, which included new programs, rules, and funding opportunities that stressed individualized funding, choice, and movement from institutional settings. The recent solicitation for the U.S. Centers for Medicare and Medicaid Services’ Real Choices grants listed the following as one of the key principles on which funds will be awarded: “Exercise meaningful choices about their living environments, the providers of services they receive, the types of supports they use and the manner by which services are provided” (U.S. Department of Health and Human Services, 2003, p. 4).

It is clear that the philosophy of self-determination has and will have a profound effect on the way that services and supports are funded. Whether or not this effect becomes a permanent and positive influence on our field depends on three things. First, it depends upon the extent to which states are successful in molding Medicaid Home and Community-Based Services waiver funds to be put to the service of self-directed supports. Second, it is tied to the extent to which there is investment in training of direct support professionals and case managers so that they become facilitators of self-direction. And thirdly, lasting change depends on the extent to which states and other administrative entities establish and maintain the flexibility that is crucial to the successful implementation of self-determination in the range of settings across and within states.