Why This Topic is Important
The idea of planning for people with disabilities has been around for a long time. What has changed is who is in charge of the planning and why it is done.
In the beginning, delivery systems and service providers were in charge of planning. They developed individual program or teaching plans. These plans laid out the steps that staff, and sometimes families, had to follow in order to teach an individual a skill. Effective teaching required consistency on everybody's part so there had to be a plan. Professionals developed the plan. Sometimes they consulted with the individual or family to identify what skills were to be taught.
Then came service or habilitation plans. They outlined the services and supports someone needed. Usually they involved agencies inviting the person and the family to help the agency develop its plan for the person. The plans generally identified which of the agency's services best responded to the person. Again, professionals developed the plans. By this time, it was often required that people with disabilities and their families attend planning meetings, but they soon figured out things went most smoothly when they asked for what the agency had to offer. Asking for what you needed would mean having to wait for services or being seen as a trouble maker.
If more than one agency or program had to be involved in a person's life, the planning process involved representatives of those other services in the planning. The plan became a way to coordinate services and the actions of staff and professionals.
In program or service planning, agencies were in control. The focus was on teaching or services. Such plans were an orderly way to identify service needs, then match what agencies had to offer with those needs. Plans could be used to anticipate future service needs but had little impact on shaping what services were offered.
Over the last 15 years of so, far more attention is being given to putting the individual and family in control of planning. Focusing on the individual's whole life is called many things – futures planning, personal futures planning, lifestyle planning, person centered planning and so on.
By whatever name, futures planning must be understood by families, advocates, self advocates, service coordinators and others who are genuinely interested in improving people's lives. It might too easily be confused with older models of planning where power and control were in the hands of professionals and agencies.
Futures planning or person centered planning has a number of features that distinguish it from service planning:
Futures planning represents a radical shift. It amplifies the voice of people with disabilities, their families and friends. It looks at capacity in people and communities.
Futures planning did not ignore disability, it simply shifted the emphasis to a search for capacity in the person, among the person's friends and family, in the person's community, and among service workers. A person's difficulties were not relevant to the process until how the person wants to live was clear. Then it was necessary to imagine and take steps to implement creative answers to this key question, "What particular assistance do you need because of your specific limitations (not labels) in order to pursue the life that we have envisioned together?"8
8Connie Lyle O'Brien, John O'Brien and Beth Mount, Person-Centered Planning Has Arrived... Or Has It?. Mental Retardation. December 1997.
Futures planning focuses on a vision that a group of people develop together, and is in fact very practical. There are many different approaches to person centered planning, but in one way or another, they involve similar kinds of steps:
This process of planning, then taking action, is far more powerful when the person with a disability has a network of people (a support circle, a circle of friends, a network of support...) who are committed to securing the future for the person. It is more fun if this group of people is not all business, knows how to have a good time, as well as work hard, and is fully part of the person's life, not just caught up in meetings.
Futures planning is based on a fundamental human right – self determination. Self determination is not a program or a service, but a set of principles that guide and direct the futures planning process. A commitment to these principles assures that people with disabilities have the FREEDOM to decide how they want to live their lives and receive the support they need. They have control over their resources and take RESPONSIBILITY for their decisions and actions.
The principles of self determination are:
When Communities Include Everyone
Imagine that individuals and families everywhere can call on talented facilitators in their communities to help them develop plans for the future. These facilitators might be other people with disabilities or family members, community members, or professionals who had been trained to facilitate decent planning processes. The facilitators are not tied to service providers, so they don't have any vested interest in the outcome, other than being true to a set of values. They help form support circles, facilitate planning, give advocacy advice, and so forth. They are not managers or coordinators, just facilitators and helpers.
Imagine that people with disabilities everywhere are surrounded by people who truly care about them, and who join together to support each other in decision making, planning, plotting and scheming, and occasionally, just having fun. Agencies see it as part of their job to connect the people they support with other members of the community. Relationships between people develop. Families trust the relationships enough to let other people assume personal responsibility, have opinions about what is best for the person with a disability, and be allies.
Imagine that your whole life plan, as a clear statement of what you need, is the basis for funding directly allocated to you or your family member. There might be some rules about what kinds of services would be funded or how much could be spent, but basically funding depends on your plan, not an agency's plan for you. You can buy the services you need from agencies. You can develop your plan totally independent of any agency. On the other hand, you might want to involve people from an agency you trust in planning so you get an idea of what they could do for what kind of cost. Naturally, if people from that agency know your situation well, you would probably want to involve them in the planning anyway.
Imagine that the plans developed by individuals with the support of their family and friends have such power that they are the basis for accountability in the system. Whole life plans are seen by the government as reasonable statements by citizens about what they need. The government measures its performance in terms of how well it is doing in supporting people to get what they say they need. There is sufficient respect and trust in the system that everyone assumes that people will only ask for what they reasonably need.
Imagine that the system is so responsive you don't have to follow a format when developing a plan. All you have to do is communicate clearly what you need, require, and how you expect to be treated.
Just imagine...then get organized.