For hundreds of years, real citizenship opportunities have been denied to people with disabilities, especially those with developmental disabilities. They have been left out of the common fabric of community life and social engagement. Partly as a response to these concerns, which have risen out of what has been called a “medical model of disability” (in which people are seen to be broken and need to be fixed), new patterns have been proposed. These patterns were founded in a social model of disability (in which people are understood to be disabled by society's inability and unwillingness to meet their need for accommodation), which will increase opportunities and capacity for people with developmental disabilities to have greater choice, control, and power—self-determination—in their lives (Aichroth et al., 2002; Smith, 1999a, 1999b).
Concepts of self-determination in the field of developmental disabilities vary widely. The meaning of self-determination is different for each one of us, and the reification and commodification of our understandings of self-determination must be carefully and explicitly avoided (Aichroth et al., 2002; Hahn & Rioux, 2000; Smith, 1999b).
One understanding of self-determination that has received increasing attention has been focused on creating substantial change in the systems of supports and services for people with disabilities and funding structures that support those systems. Within this framework, people with disabilities, families, and other allies seek to gain increased choice and control over their supports and lives (Kennedy, 1998; Yuan, Baker-McCue, & Witkin, 1996). Individualized funding and support brokerage, alternatives to more traditional approaches to funding and support planning, are at the foundation of this understanding of self-determination and the cutting edge of a new way of thinking about supports for people with disabilities.
Individualized Funding: Control Over Supports
Individualized funding structures are a prerequisite for real choice and control over supports for people with disabilities. Individualized funding does not simply mean creating individual budgets for people who receive services, although individual budgeting is an important part of individualized funding approaches. The most important principle undergirding individualized funding is that “individuals who need support in order to participate in society will control the funding for the services that they choose in order to live their own lives” (British Columbia Coalition, 1998). Implicit in this principle is that people with disabilities or their families have direct control over funding.
Individualized funding approaches have substantial benefit for people with disabilities in areas of personal empowerment, cost effectiveness, and reducing dependence on social services. Self-advocates, their families, and professionals alike recognize that individualized funding gives people who receive services the ability to make their dreams come true. Independent support brokers play an essential role in designing and implementing plans for those dreams. People with disabilities are clear that the choice to have planning supports that are independent is a critical feature in the process of developing a meaningful life. Some trade unions, perhaps fearful of what might happen to traditional social service jobs in such a model, have been critical of individualized funding approaches and support brokerage (National Union, 1997, 1998).
Support brokerage is one of a number of what Wetherow (2002) called second-level supports. First-level supports are those direct supports or services required by a person to live their life, such as supports in independent living, housing, and employment. Second-level supports are those supplemental supports that make it possible for first-level supports to occur or for people to use them in the best possible way, for example, supports in planning, consultation, training or education, and management.
When brokerage is being described, the terms service and support are often used interchangeably. However, they do have different meanings, reflecting a transition from a system of services to a system of supports (Smull & Smith, 1994). In Vermont, we have chosen the term support brokerage to describe the role, reflecting our understanding that self-advocates and families want to be supported, not to merely receive services.
Salisbury (1989), a researcher and advocate exploring support brokerage in British Columbia, said that brokerage has two critical, intertwined parts: a system of individualized funding and a “fixed point of response” in the form of brokerage. He later defined it as a “system function and process in which advice, information and technical assistance is made available to individuals who request support to: identify and access needed community services and supports [and] negotiate for and use individualized funding” (Salisbury, 2000). Personal networks or circles of support are instrumental in helping people make decisions in their lives.
History of Support Brokerage
The concept of support brokerage began in the 1970s as a result of the work of a group of families in British Columbia, each of whom had children with developmental disabilities institutionalized at the Woodlands School near Vancouver. These families, who called themselves the Woodlands Parent's Group, believed that institutional models of care were inappropriate, and they sought not only to return their sons and daughters to the community, but also to find a way to release financial and other resources bound up within institutions.
Families from the Woodlands Parent's Group formed an organization, the Community Living Society, that was successful not only in developing a brokerage model, but in developing an approach to individualized funding. Through this organization, parents were able to divert funding from the institution, allowing some of their children to be supported in the community. Similar approaches were later implemented in other places in Canada: Calgary, Thunder Bay, and Edmonton.
At the same time that this activity was happening in Canada, the Independent Living Movement in the United States began to reach similar conclusions regarding empowerment of people with disabilities, the importance of consumer-directed supports, and the need for brokerage roles (Bach, 1998; Ganzales, 1992). From British Columbia, support brokerage models have spread around the world—to England, Scotland, Australia, and the United States.
In the United States, Robert Wood Johnson Foundation grants to states to explore self-determination also spurred activity around support brokerage. In 1999, 10 states were reported to be using support brokerage, although, at least initially, these brokerage entities were not seen as functioning independently (Agosta et al., 1999). In various states, support brokers played different roles; choice among brokers was sometimes limited and often only theoretical; and many had only minimal authority (Agosta et al., 1999).
What Does Support Brokerage Look Like?
It is essential that the function of brokerage be independent of organizations that otherwise provide services or have other responsibilities (Bach, 2000; Dowson & Salisbury, 2001; Smull & Smith, 1994). Salisbury (2000) put it bluntly: brokers “simply can't serve two masters at the same time.” Support brokers need to work for people using supports, ensuring that there are no conflicts of interest. They should be independent, receiving funding not from governmental or provider sources, but from the person with a disability.
Case management and support brokerage are not the same. Case management is defined for people receiving supports, whereas brokerage is defined by people receiving supports. Although individualized funding is central to support brokerage, this is not the case with case management; and although brokers can (and probably should) be independent, case managers cannot because they typically serve a gate-keeping function.
The work of independent support brokers involves an ethical stance that is founded on a set of values that includes inclusion, freedom, choice, interdependence, community contribution, and social engagement. These values are common to a number of professional domains, including supported employment, early intervention, family supports, speech language therapists, and interpreters for deaf persons. Independent support brokers recognize that self-advocates and families by whom they are employed are unique, with individual dreams and interests.
Support brokers understand that everyone has basic rights to inclusion in the common social fabric of communities and lives that are dignified. They also are aware that the cultural norms of families and self-advocates may be different from their own. The role of the independent support broker does not involve decision-making nor the imposition of the support broker's own values (Salisbury, 1989, 2000).
Some parents prefer to fill the role of broker. This can work well when the person with a disability is a child; and the parent is usually the person who knows their child best. When the person is an adult, however, conflicts may occur when well-intentioned parents, believing they still know their son's or daughter's wishes, fail to listen to what he or she really wants. In such cases, access to independent brokerage can be a safeguard to the rights of the person with a disability.
What do support brokers do? Put simply, they get people what they want. One of their principal roles is to provide independent, accountable support in planning, thereby increasing the clarity of vision about what a person's life can be. They also provide information about resources, develop circles of support, negotiate and contract for supports, develop community supports, and assist with plan reviews.
Support brokers need to know certain things and have specific skills. They also, however, need to be certain kinds of people. Salisbury (1989) noted that they need to have a “fundamental commitment to empowering people with disabilities (and their networks), while safeguarding basic human rights” (p. 3). Without this, all the technical knowledge and skill in the world will mean nothing.
Still, knowledge is important. Knowing how to relate to diverse stakeholders, understanding multiple service systems, being aware of generic and specialized resources, and having experience with estimating costs and developing budgets are critical. Brokers need to have an understanding of the social model of disability as well as knowledge of legislation, policies, politics, services, and programs. An understanding of individualized and personal planning processes is important, as are skills in negotiation, identifying services, writing contracts, creative problem-solving, group facilitation, and monitoring supports.
Vermont has had a number of years of experience using support brokers in its systems of supports. The second state in the United States to close down its large institution for people with developmental disabilities, Vermont is unique in that almost everyone receiving supports in the state has an individualized budget (except for those very few who live in group homes, all of which are smaller than 6 residents). Self-advocates and families can receive supports through the traditional service system (a designated provider system made up of nonprofit agencies throughout the state), or they can self-manage their supports, which often involves hiring their own support broker. For those involved in self-managing, families, support brokers, and self-advocates see a good support broker as someone who listens to the needs of self-advocates and families; gets back to people promptly; helps develop and coordinate training for support staff; continues to learn and grow; is knowledgeable about resources and systems of support; maintains frequent, personal contact with people with whom they work; monitors budgets; and meets deadlines. Many families use clear, succinct job descriptions with their brokers to help ensure that everyone knows their role and what is expected of them.
Several formal trainings have been held to create a cohort of brokers in Vermont. Developed and led by people with disabilities, families, and professionals, these training sessions offer opportunities to explore values as well as provide specific information about topics that include person- and family-centered planning, taxes, liability, and insurance.
A number of people around the state have begun working full-time as support brokers. They have come from the ranks of former case managers, support workers, and family members (one of the best was the sister of a person with a disability). One entered a person's life when she tutored him in computer use. She was successful, perhaps mostly because she had no preconceived notions about what was possible in the lives of people with disabilities. Values, not necessarily experience, may be at the core of what makes a good support broker.
It is not too simplistic to say that “brokerage is a complex and demanding role” (Salisbury, 1989, p. 4). It is an emerging and developing way of thinking about and planning for supports for people who have disabilities, with diverse approaches, methods, and philosophies. When coupled with individualized funding approaches, it can have real benefits for people with disabilities, their families, and their communities.
More needs to be learned about best practices for implementing support brokerage, however. Because individualized funding approaches are not yet universal, support brokerage cannot currently be implemented everywhere. What are appropriate ways for putting support brokerage options into practice? What should the roles of self-advocates (persons with disabilities who speak for themselves) and families be, both in creating these options and in governing them on an ongoing basis? Should support brokers be state-sanctioned or certified? These are important questions that future researchers will need to address.
Policy research and analysis will be critical in creating change initiatives. How will states and the federal government need to change funding structures and systems of supports in order to implement support brokerage? For those places without a grounding in individualized funding, what systems-change strategies will need to be explored? What work will advocates, professionals, and others need to undertake to implement these systems-change activities?
How this research is conducted may be as important as the outcomes of such inquiry. Involving self-advocates and families in this exploration, as active and equal research partners, will be essential in ensuring that the questions they want asked are addressed (Smith, 2001; Taylor, 1996). Research in all areas of self-determination, including those involved with approaches to independent support brokerage, must “privilege voices of persons with disabilities” (Smith, 1999a, p. 135). To do otherwise will be to disempower, remove control, and eliminate choice for those who wish to claim choice, control, and power as their human and civil rights.
Author:Phil Smith, EdD, Executive Director, VT Developmental Disabilities Council, Weeks Bldg., 103 S. Main St., Waterbury, VT 05641. firstname.lastname@example.org