Individual Budgeting
Traditionally money is allocated to agencies, service providers work for the agency, and the individual with a disability is a recipient of the agency’s services. In a participant direction model, money is not sent directly to an individual, but rather to a fiscal agent or intermediary who is answerable to the individual with disabilities (Agosta et al., 1999). The agent is responsible for paying staff, handling taxes and insurance, and other financial matters. Service providers work for the individual with a disability. Decisions about hiring, paying, supervising, and firing staff are made by the individual and his or her allies rather than the service agency.
States have different methods for deciding how much money is allocated to an individual. But the important issue is that the amount is set by a data-driven procedure, usually either top-down or from the bottom-up. In the top-down method, key decision makers use a standardized assessment to set a general budget level prior to developing a person-centered plan. In the bottom-up approach, the budget is developed through discussion and negotiation during person-centered planning (Mosley, 2005).
Brokerage
A broker is someone who arranges for supports and services. The broker also acts as a bridge between people providing supports and services and the individual with a disability and his or her allies. The individual budget provides the means to pay for implementation of the person-centered plan. The broker provides human resources to transform the plan into an actual lifestyle – getting people with disabilities what they need to live their life. It is essential that support brokers have the necessary skills to promote inclusion, community connections, and productivity, and that they know a range of people on whom they can call to provide inclusive community supports.
Participant Direction: How We Got to Where We Are
In 1997 the Robert Wood Johnson Foundation (RWJ) invested more than $5 million in 19 demonstration projects across the country (Arizona, Connecticut, Florida, Hawaii, Iowa, Kansas, Maryland, Massachusetts, Michigan, Minnesota, New Hampshire, Ohio, Oregon, Pennsylvania, Texas, Utah, Vermont, Washington, and Wisconsin). These projects explored ways that people with developmental disabilities could influence the type and amount of their supports through self-determination. Projects focused on broad (statewide) policy reforms as well as targeted (a few individuals and families) programs. Two main strategies emerged for systems change. The first, adopted by most states, used the RWJ grants as a means to learn about implementing self-determination first on a small scale and then expanding over time. The second, adopted by a few states or counties within states, changed entire systems over to self-determination structures. State goals included the following: involving self-advocates and family members in planning and implementation; decreasing overall costs; decreasing wait lists; creating a favorable policy environment; and developing an effective structure for delivering supports based on self-determination principles (HSRI, 2001). About 2,750 people with disabilities participated in the demonstration projects (Conroy et al., 2002).
After the project’s first year, the Human Services Research Institute (HSRI) identified the key factors that facilitated or hindered project goals. Facilitating factors included having a clear vision, having the infrastructure for information management and quality assurance, and having flexible financing options through Home-Community Based Services (HCBS). Barriers included the short duration of the grant, lack of a strong advocacy group for project goals, problems with fiscal intermediaries and service brokers, and uncertainty of current and future financing (HSRI, 1999). The final report (Conroy et al., 2002) was based on 441 people participating in pilot projects in six states (California, Hawaii, Maryland, Michigan, Ohio, and Wisconsin). Projects did successfully answer the questions resulting from their theory of self-determination: Did people gain more control, did people’s lives improve, and did costs decrease? Some of the findings are highlighted below.
Evaluation of RWJ Demonstration Projects
Respondents in all six states reported significant increases in control of major and minor life decisions.
Individuals with disabilities in all six states reported improvements in their quality of life.
Families reported that the lives of the person with a disability improved in 14 areas such as health, relationships, safety, treatment by staff, and daily activities.
Costs decreased in two states by about 7% and 13%. In another state, they increased by half of the costs of a comparison group without participant direction.
The Independence Plus Initiative
President Bush’s New Freedom Initiative, announced in February 2001, did much to foster participant direction. This initiative was designed to further the Americans with Disabilities Act (among other goals) by promoting full participation in community life for people with disabilities. In order to carry out the goals of the New Freedom Initiative, Centers for Medicare and Medicaid Services (CMS) created the Independence Plus Initiative. This initiative is a vehicle for states to design programs that offer a higher level of choice and control for people with disabilities.
Independence Plus programs allow states to provide services that include the following key components of participant direction: person-centered planning, individual budgets, and assistance in managing supports (support brokerage). By January 2005, 10 states (New Hampshire, South Carolina, Louisiana, North Carolina, Maryland, Delaware, Connecticut, Florida, California, and New Jersey) were operating an Independence Plus program; 23 others were in process (Yuskauskas, 2005). (See this newsletter's law article for more information about the New Freedom Initiative and Independence Plus).
Clarifying Individual Control
Over the past several years, various names and terms have served more to confuse the issue of participant direction rather than to clarify it. We hope this article will provide much-needed clarity by reviewing previous terminology and discussing key components of the process of participant direction. We will then propose a new term to express its meaning more accurately.
A review of recent publications revealed that no two studies define key terms in exactly the same way (Agosta et al., 1999; Aichroth, 2002; Dowson & Salisbury, 2002; Fortune et al., 2005; Head & Conroy, 2005; Lord & Hutchinson, 2003 Mosley, Gettings & Cooper, 2005; Shumway, 1999; Smith, 2003; Stancliffe & Lakin, 2005). Terms include self-determination, individual budgets, individualized funding, self-direction, and self-management. Although the specific terminology varies, these three key components remain fairly constant: person-centered planning, individual budget, and brokerage. Recent literature also is fairly consistent when discussing outcomes. The anticipated outcome of participant direction is individual control over one’s life. Conroy and colleagues (2002) offer this expectation: “If people gain control, their lives will improve and costs will decrease” (p. 1).
Another line of research examines self-determination in youths with disabilities during their years in secondary education. Wehmeyer defines this type of self-determination as “acting as the primary causal agent in one’s life and making choices and decisions regarding one’s quality of life free from undue external influence or interference” (Wehmeyer, 1996, p. 24).
Until now, these two lines of research have been conducted separately. We would like to see them merge in research and practice, and we recommend a new definition to incorporate both (see “A New Definition” below).
A New Definition
We believe one of the most important next steps to help clarify this concept is to propose a definition that encompasses all the concepts and their components. We recommend the term individual control of budgets, supports, and services as the service model and the term participant direction, as defined by the Centers for Medicare & Medicaid Services, as the outcome of this model. In other words, the anticipated outcome of the service model of participant direction would be individual control of budgets, supports, and services delivered through the components of person-centered planning, individual budgets, and support brokerage.
What’s Next in Participant Direction Research
Most of the literature published to date includes the nuts-and-bolts of how to successfully implement participant direction of funding, supports, and services. We found some information on outcomes for individuals with disabilities, but few, if any, specifics on how participant direction impacts families. To fill this void, the Beach Center launched a line of research designed to answer the following questions:
Why do people choose participant direction of budgets, supports, and services?
How do people implement the components of participant directon of budgets, supports, and services?
What are the best practices when implementing participant direction?
What are the family and individual outcomes of participant direction?
For the qualitative studies, we will conduct case studies of eight-ten individuals in two states who have intellectual and developmental disabilities (four to five individuals in each state) and who use participant direction of budgets, supports, and services. Each participant will have a history of presenting a variety of challenges to the traditional service system. We also will interview key people in the target person’s life (e.g., family, friends, staff, housemates, agency administrators, case managers, service brokers) to learn how participant direction is implemented successfully and how each person contributes to its success.
We will hold focus groups in eight communities in two states to address broader implementation and policy issues. In these focus groups, we will talk to people with disabilities, service providers, family members, administrators, and state government representatives who offer a broad perspective on the policies and practices in general. Information gathered in these interviews and the case studies will be presented back to the participants, as well as to state and local task forces that are committed to improving policies and practices.
Results of this research will be presented to community action groups called Communities of Practice. A Community of Practice (also called a Community of Learning) is a group of “people who share a concern, a set of problems, or a passion about a topic, and who deepen their knowledge and expertise in this area by interacting on an ongoing basis” (Wenger, McDermott, & Snyder, 2002, p. 4). The Participant Direction Communities of Practice include people with disabilities, family members, teachers, direct service staff, administrators, disability advocacy organizations, government representatives, and university faculty who are committed to the values of individual control. They will review research results and work together to develop an action plan to enhance policies, practices, and outcomes at the federal, state, and local levels.
One such group is already meeting in Lawrence, KS. At the group’s last meeting, an agency staff member who coordinates participant direction programs for about 50 people reported that a software program might make participant direction logistically easier for those involved. This is just one example of the good ideas that can emerge from a group of individuals committed to improving policies, practices, and outcomes.
Throughout these studies, we intend to produce journal articles, presentations at conferences, policy briefs, and user-friendly software and manuals for individuals, families, and professionals on how to successfully implement participant direction of funding, supports, and services.
On-going updates of our research and products will be available on our website. Or, for more information, contact Judith Gross at jgross@ku.edu.
References
Agosta, J., Bradlet, V., Taul, S., Melda, K., Taylor, M., Kimmich, M., et al. (1999). The Robert Wood Johnson Foundation self-determination initiative: Year one impact assessment report. Cambridge, MA: The Human Services Research Institute. Aichroth, S., Carpenter, J., Daniels, K., Grassette, P., Kelly, D., Murray, A. et al. (2002). Creating a new system of supports: The Vermont self-determination project. Rural Special Education Quarterly, 21(2) 16-28.
Conroy, J. W., Fullerton, A. Y., Brown, M., & Garrow, J. (2002). Outcomes of the Robert Wood Johnson Foundation’s National Initiative on Self-Determination for Persons with Developmental Disabilities. Narbeth, PA: Center for Outcomes Analysis.
Dowson, S. & Salisbury, B. (2002). Foundations for freedom: International perspectives on self-determination and individualized funding. Baltimore: TASH.
Fortune, J. R., Smith, G., Campbell, E. M., Clabby II, R. T., Heinlein, K. B., Lync, R. M., et al. (2005). Individual budgets according to individual needs: The Wyoming DOORS system. In R. J. Stancliffe & K. C. Lakin (Eds.) Costs and outcomes of community services for people with intellectual disabilities (pp. 241-262). Baltimore: Paul H. Brookes Publishing.
Head, M. J., & Conroy, J. W. (2005). Outcomes of self-determination in Michigan: Quality and costs. In R. J. Stancliffe & K. C. Lakin (Eds.) Costs and outcomes of community services for people with intellectual disabilities (pp. 219-240). Baltimore: Paul H. Brookes Publishing.
Lord, J., & Hutchinson, P. (2003). Individualised support and funding: Building blocks for capacity building and inclusion. Disability & Society, 18(1), 71-86.
Mosley, C. R., Gettings, R. M., & Cooper, R. E. (2005). Having it your way: A national study of individual budgeting practices within the states. In R. J. Stancliffe & K. C. Lakin (Eds.) Costs and outcomes of community services for people with intellectual disabilities (pp. 263-288). Baltimore: Paul H. Brookes Publishing.
O’Brien, C. L., & O’Brien, J. (2002). The origins of person-centered planning: A community of practice perspective. In S. Holburn & P. M. Vietze (Eds.). Person-centered planning: Research, practice, and future directions (pp. 3-28). Baltimore: Paul H. Brookes Publishing.
Shumway, D. I. (1999). Freedom, support, authority, and responsibility: The Robert Wood Johnson Foundation national program on self-determination. Focus on Autism and Other Developmental Disabilities, 14(1), 28-35.
Smith, P. (2003). Self-determination and independent support brokerage: Creating innovative second-level supports. American Association on Mental Retardation, 41(4), 290-298.
Stancliffe, R. J., & Lakin, K. C., (2005). Context and issues in research on expenditures and outcomes of community supports. In R. J. Stancliffe & K. C. Lakin (Eds.) Costs and outcomes of community services for people with intellectual disabilities (pp. 203-218). Baltimore: Paul H. Brookes.
Turnbull, A., Turnbull, R., Erwin, E., & Soodak, L. (2006). Families, professionals, and exceptionality: Positive outcomes through partnerships and trust (5th Ed.), Upper Saddle River, NJ: Merrill/Prentice Hall.
Turnbull, A. P., Turnbull, H. R., Poston, D. J., Lida, K. M., & Summers, J. A. (2005). Individual control of budgets, supports, and services: Past, present, and future. Manuscript in preparation.
Wehmeyer, M.L. (1996). Self-determination as an educational outcome: Why is it important to children, youth, and adults with disabilities? In D.J. Sands and M.L. Wehmeyer (Eds.) Self-Determination across the life span, (pp.17-36). Baltimore: Paul H. Brookes Publishing.
Wenger, E,. McDermott, R., & Snyder, W. M. (2002). Cultivating communities of practice: A guide to managing knowledge. Boston: Harvard Business School Press.
Yuskauskas, A. (2005). Medicaid program innovations that support individual autonomy. TASH Connections, 31, (3/4), p 6-13.