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

The values of a community or group of people permeate and influence what they do, including how their service systems operate. People in Vermont think of their state as a place where people share certain values with respect to “taking care of one’s own” and because it is a small state, people have relatively close contact with one another. The state of Vermont has long been a leader in providing individualized supports and in efforts to increase consumer control and choice. Since the Medicaid waiver was enacted in 1981, the state has chosen to use this funding stream to support people in individualized ways, rather than using it to fit people into programs. Thus, for over 20 years the state Division of Developmental Services has used individualized budgets, which allow for money to follow the individual for people funded through the Medicaid waiver. In the past, this contributed to Vermont’s ability to close its state institution as well as to develop largely individualized rather than congregate, facility-based services. In addition, having a designated provider system (which includes 10 designated agencies and 5 specialized service agencies) has required that all individuals, regardless of the severity of their disability, be served by community providers in their local region. As Theresa Wood, Director of the Division of Developmental Services, commented, “The designated agency system ensures a community safety net for people with the most significant disabilities.”

During the 1990s, there was a growing realization among many stakeholders – including self-advocates, families, the Division, service agencies, and others – that individualized budgets were not sufficient, and that there was a need for more options for choice and control by people with disabilities and families. The Division and collaborators applied for and were awarded a three-year grant (1997-1999) from the Robert Wood Johnson Foundation to implement the Self-Determination Project. Among other things, the project provided resources to move from individualized budgets to consumer-controlled budgets. In particular, the project assisted with research on the use of ISOs (intermediary service organizations), development of the ISO as a tool, and provision of training and information to people about their choices.

To receive services, an individual must apply for services, after which an eligibility evaluation and needs assessment are done, and a funding proposal is submitted to a local funding committee. If the person’s needs line up with a system-of-care plan funding priority, the person receives funding to meet that need. They then have the option of self-management, family management, agency management, or shared management of services. Each designated agency must have an individual who will assist the person in whatever choice they make.

Consumer control gives individuals greater flexibility around who works for them, when the person works to support them, and exactly what the job description is. Ms. Wood has observed, “It’s very personalized and staff are accountable to the person, not an agency.” She has further noted, “Being in charge gives people with developmental disabilities the same things that it gives anyone – a sense of power, of being in control, and of being able to prioritize things that are important.” In this way, in general, resources get directed in better ways. At the same time, however, consumer control requires involvement with payroll, timesheets, the ISO, hiring, firing, and training staff. Due to the amount and type of effort involved, it seems to work best when individuals and families have strong teams supporting them.

Consumer control is still evolving in a variety of ways within the system. For instance, even with consumer control people are still linked to service agencies. However, some people have expressed the desire for less connection to agencies. Through a Real Choice grant awarded by the Centers for Medicare and Medicaid Services, U.S. Department of Health and Human Services, to promote community integration and systems change, Vermont is initiating a pilot direct consumer funding project. In conjunction with this, the role of ISOs may be expanded to include involvement with staff hiring and firing, budget development, and so forth. In addition, the system is evolving so that individuals and families will be able to set their own budget based on the needs assessment. This option will start in 2004. Finally, through the Real Choice grant, there is effort to make the process of self-management less cumbersome.

At the same time that so much effort is being put into facilitating consumer control of budgets and services, there is recognition that everyone does not want to manage their own budgets and services. Therefore, attention has also been given to promoting evolution within service agencies that promotes increased choice and control. For example, individuals can write their own ISA (individualized support agreement), have access to detailed information about their budgets, and can negotiate regarding resource allocation.

The efforts to promote consumer control in Vermont have created many very positive changes for individuals, as well as for the system as a whole. At the same time, there are always challenges associated with change. One challenge is to continue to educate more people about the realities of consumer control. As Julie Martin, Director of Community Developmental Services at Washington County Mental Health Services has reflected, “Agency staff still encounter individuals and families who have misperceptions about the work and responsibilities associated with consumer control.” Also, when consumer control was first an option, a perception was held by some people that the option of consumer control was being used only in response to negative experiences with agencies. Over time, this perception seems to be shifting somewhat. However, from an agency perspective, there is still need for further promotion and visibility of the fact that consumer control can and is being used as an option by many people for many reasons.

A second challenge is to promote equality throughout the system. For example, in some instances agencies are seeking more guidelines about resource allocation for people who control their budgets versus those who do not. The Division is actively working to address this issue by working to establish clarity about boundaries and guidelines that apply to all individuals (those who control their budgets and those who do not) and that will help ensure that individuals who do and do not control their budgets have access to the same resources.

One of the major lessons that has been learned in Vermont is that there is no model for implementing consumer control. It involves a lot of trial and error. It involves finding new ways of collaborating with individuals and families. And, it involves the need to continually look for ways to improve. An alternative would have been to wait until other states and localities had figured it out – but, as has been so clearly evident throughout the evolution of services in Vermont, that is not “the Vermont way.”