(Impact, Volume 12, Number 4, Winter
1999/2000)
As service systems increasingly embrace the principles and practices of self-determination and individual funding, people are looking at the roles of those who have been traditionally known as case managers or service coordinators. The expectations that many had of service coordinators in the late '70s and early '80s have been buried under increasing numbers of people to support and endless paper to complete. As we change from service coordinators to support brokers (or whatever new label is adopted), we have the danger of just changing the labels without changing what happens. Unless the underlying structures are changed, including reducing the volume of paper and the numbers of people each support broker works with, the changes in roles and expectations needed to achieve self-determination are doomed. Real change needs to begin with an understanding of the desired outcomes and then move to developing the structures to support it. We need to begin by asking what do support brokers need to know and do?
I could say that the support broker's job is to help people have their own lives where they are supported by and contribute to their communities. While this is true, it is also too glib. "Sound-bite" advice is often a good way to help people remember complex ideas, but the ideas have to be explained first. If I had the opportunity to briefly explain what I meant, I would talk about roles and responsibilities mixed with values, gifts, and talents.
At its core, the work of a support broker is about partnership, partnership with those supported and those involved in their lives. Partnerships are built on a foundation of respect and trust. Unless people with disabilities and their families feel respected, the trust needed to share what is important and to take the risks inherent in growth will be absent. Without trust there will be no partnerships. Real success is easier with
(and usually requires) a series of interlocking partnerships. Partnerships are needed between people with disabilities, their families, those who provide the support, and those who do the planning and funding. These partnerships require effort to establish and maintain. Some of what follows begins to describe what is necessary to create and sustain them.
It Begins with Listening
Everybody involved in these partnerships must feel that they are listened to. Compromise is often required and disagreements will sometimes occur, but everyone must feel that the service broker/support plan facilitator has listened to them. While everyone has ideas and important contributions to make in developing and implementing service plans, those involved must keep in mind that the individual with disabilities is the expert. They need to listen to what the person says with words and behavior about how they want to live, and act on what they say. They have to be careful to distinguish between what the person wants and what others want for the person. And they need to understand that what someone asks for may be limited by what they have tried. What someone is saying that they want is based, in part, on their experiences. People need opportunities to try things to see if they will like them.
After the person with disabilities, the most important people to listen to are family members. In many instances they were the only advocates who were present before the support broker met the person and they are advocates who will be there after the support broker is gone. Part of the role of the support broker is to help to maintain and enhance their relationships with the person as part of their work in representing the person. They need to understand and take into account the family's perspective. Where what family members
want for the person is different from what the person wants for himself or herself, they need to understand why. Where there are differences that are substantial, they need to negotiate a compromise that maintains the relationship while creating a balance that works to the person. While there are notable exceptions, among the things that most people want and need are continued good relationships with their family.
Plans as Frameworks for Learning
The support plan that is developed with the person is a
focal point at which many efforts and ideas come together and are represented. A support
plan should begin with recording the learning that resulted from listening and that
describe what will be done to act on what was learned. The plan should:
The plan should describe the direction of the journey and the destinations along the way. The plan must, however, be viewed as a work-in-progress, base on recognition that learning is continuous and the partnership ongoing. Plans should provide a framework for recording the ongoing learning that takes place, and describe what will be done whom in response to the learning.
Helping Find a Balance
Few people, regardless of the present or absence of disability labels, have a perfect life. What we all seek is a life has a balance that we see as positive. The support broker's job can be seen continuously working toward a balance that works for the person, a balance between what is important to the person and what is important to those who know and care about the individual, and between what is important to the person and any issues of health and safety. it is important to remember that this is a journey, not an event. The best balance that can be achieved today is the starting point. As the person grows and changes, as others' perceptions of the person change, as our understanding deepens, opportunities for a better balance arise. Self-determination is not about a single effort; it is about pushing for the best immediate outcome, looking for new opportunities, and continuing to listen to the person. In seeking a balance that works for the person, the order in which you answer questions matters. For example, it is important to learn how somebody wants to live before you look at where. It is important to learn what would make the person happy, and then determine how they can be healthy and safe within the context of being happy.
It's About Control and Possibilities
Support brokers have to be able to facilitate the use of individual budgets. Skills in managing money are important, but money is only where it starts. It is really about control. If people can use and move their public dollars as makes sense to them, they are more likely to be listened to and achieve a balance that makes sense. Doing this requires that the public funding be seen as not just a way to buy services, but also as a way to leverage changes in the services available. With enough flexibility, money allocated to buy services can assist people in building community. Sometimes this occurs by paying people to "bridge" or "connect" with everyday community settings. Sometimes it occurs when coworkers are paid to provide the needed support. But, it all starts with seeing possibilities. The best support brokers are not trapped by what is; they lead a process where people go beyond the boundaries of the system and see the possibilities in the community.
It's Not Just One Person's Job
A service provider's response to this list of' responsibilities and activities may well be, "'This is the ideal, but we'll never be able to afford it." If the support broker is the only one to do all of what is needed, it is unlikely that there will be the funding to have enough support brokers with all the needed skills and community connections. Central to achieving self-determination in service coordination is, again, partnerships. If the work is done in partnership, the broker does not have to be the only one doing it. With support, there are families, self-advocates, and service providers who are developing and implementing remarkable life plans. Ongoing, continuous learning is essential to success and can only happen in partnership.
Conclusion
Much of the creative thinking (and learning) about helping
people live lives of their choosing, and be supported by and contribute to their
communities, is happening within existing service systems. Whether part of more
traditional service systems or part of new self-determination initiatives, successful
service coordination depends on looking for opportunities to develop productive
partnerships, listening to persons with disabilities and their families as they identify
what they want and need for their lives, developing and implementing balanced plans,
leveraging resources effectively, and seeing possibilities. It is about making sure that
the truly important work in building a life is happening.
Michael Smull is Director of Support
Development Associates, Annapolis, MD.
He may be reached at 410/1626-2707 or by
e-mail at mwsmull@compuserve.com.