Whole Life Planning (Person Centered Planning)
- Participants will be able to describe the importance of whole life planning (person centered planning) and self-determination for people with developmental disabilities.
- Participants will understand the principles of choice and control of resources in whole life planning.
Why This Topic is Important
The idea of planning for people with disabilities has been around for a long time. What’s changed is who is in charge and why it’s done.
In the beginning, delivery systems and service providers were in charge of planning. Professionals developed individual program or teaching plans. Sometimes they consulted with the individual or family to identify what was to be taught; sometimes they didn’t. These plans prescribed the steps that staff, and sometimes families, had to follow in order to teach the individual new skills. Effective teaching required consistency on everybody's part, so there had to be a plan.
Then came service or habilitation plans that detailed the services and supports an individual needed. Some agencies invited the individual and the family to help the agency develop the plan. These plans identified which of the agency's services would meet the person’s needs. Again, professionals developed the plans. Later, agencies were often required to ensure the individual and/or family was present at the planning meetings. Soon, individuals and/or their families figured out they should simply ask about “what the agency had to offer.” They learned that if you asked for what you really needed, you might have to get on a waiting list for those services and/or you put yourself at risk for being seen as a “troublemaker” by asking for “too much.”
If more than one agency or program was involved in a person's life, representatives from those agencies/programs would be involved in the planning. The plan was supposed to be an effective method of coordinating the services and the actions of the relevant personnel.
In traditional program or service planning, agencies were in control. The focus was on teaching or services. These plans were an orderly method to identify service needs, then match what agencies had to offer with those needs. Plans could be used to anticipate future service needs, but they had little impact on shaping what services were currently available.
Over the last 30 years or so, significant changes have taken place. Far more attention is focused on ensuring the individual/family is in control, and the plans are moving away from program/service planning to a focus on the individual’s whole life. Such plans may be referred to as: futures planning, personal futures planning, lifestyle planning, person-centered planning, etc.
By whatever name, everyone involved in the process—the individual, the family, friends, advocates, service coordinators, and others—must understand what whole-life planning really means. In addition, they need to recognize how easy it is to slide backwards toward the older models of planning, where agencies and/or professionals were in charge.
Some states have mandated that any plan written for an adult with a disability who receives services must be a person-centered plan. This seems like a step in the right direction. However, people who are involved in some of these states report that what they’re calling “person-centered plans” are no different than what they’ve always done. In some cases, the individual who is the focus of the plan isn’t even present when the plan is written! This is not a person-centered plan.
Because of waiting lists for services and/or anticipated cuts in services that always seem to be on the horizon, no one can ever be sure that the services one has today will be there tomorrow. Thus, it’s important that we all recognize the value of the natural supports (family, friends, neighbors, church members, etc.) and the generic services (the same things used by people without disabilities like businesses, park and rec, YMCAs, libraries, child care facilities, and/or any other entities) in our communities that could meet the needs of a person with a disability and/or family. When people with disabilities and/or families use natural supports and generic services, they’re automatically included. Connecting with others, based on shared interests, opens the doors to opportunities, experiences, and relationships that can change a person’s life. When thinking of whole-life planning, include the “ordinary people” in the community who know, care about, and can make a difference in a person’s life.
Whole-life planning has a number of features that distinguish it from service planning:
- The focus is on the individual's whole life, not just services.
- The plan is the person's plan, not an agency's.
- The people involved in the planning are there at the individual’s invitation; no agency and/or professional decides who participates.
- The individual, family, and friends are the most active participants; professionals participate to advise and support, not to control.
- The focus is on a vision for the present and the future, finding do-able ways to get there, and building commitment, instead of accepting “what is” and/or what’s “realistic.”
- The emphasis is on (1) identifying a person's strengths, gifts, and talents, and building on those, and (2) meeting the person’s needs, instead of focusing on assessments of "what's wrong” with the individual.
- The challenge is how the individual, family, friends, and services (not only services) can work together to achieve the vision.
- The person's whole-life plan can serve as the foundation for exploring what services may be needed; at that point, a service plan to formalize those services may be written.
Whole-life or 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. According to John O’Brien and Beth Mount,
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.
Whole-life planning represents a vision created by a group of caring, involved, and committed people, and it’s very practical. There are many different approaches to whole-life planning, but they involve similar steps:
- People who know and care about the individual, and who are chosen by the individual, come together to plan and make things happen. The person's life and the planning process are richer if these people share a commitment to the person, and it’s okay if they have different perspectives. Family, friends, staff, and professionals can contribute to the richness.
- The group shares its insights in “who” the person is, and listens very carefully to what the person has to say. Who is important to the person? What are the person's gifts and talents? How does he or she make the lives of other people and the community richer? What are the person's desires and dreams for the future?
- Develop a shared vision of what the future can look like for the person. The vision is wide open. The group can focus on key questions regarding the person’s participation in the community, choices/rights, respect, competence, and more.
- Identify barriers, obstacles, opportunities, and capacities in the environment that can stand in the way or help achieve the vision. This becomes the practical action plan to move toward the vision. Create two timeframes for action: short-term (what can be done now/soon to move things along), and long-term (what might take more time).
- Identify who does what, when, and how, so everyone’s on board. If agency representatives are involved in the planning, this is when they make commitments to develop or offer supports. If not, other members of the group may plan to meet with agencies to get such commitments.
- Go for it! Members of the group do what they said they would do.
- Stay in touch and stay focused. The group meets regularly to see how things are going, keeps their focus, changes direction if needed, and celebrates their accomplishments.
- This process of planning and taking action can and should be fun and enjoyable!
Whole-life planning is based on the fundamental human right to live a self-determined life. Self-determination is not a program or a service, but a set of principles. A commitment to these principles ensures 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 include:
- Freedom to choose how to live, where to live, and with whom to live and, if necessary, to receive assistance from friends and close family members.
- Relationships that are freely created, nurtured, and protected.
- Contribution and community that are meaningful—to be employed, have a home of one's own, to participate in and contribute to building a stronger community for everyone.
- Responsibility for personal decisions and actions; as necessary, families, friends, and professionals help people with disabilities create more meaningful relationships, connect them with needed supports, remove barriers, and develop safety networks to help make personal dreams come true.
- Authority to make decisions about financial resources, determine needed supports, and control the hiring and evaluating of those who provide support.
- Dreaming is encouraged and respected; supports are provided to help make dreams come true.
- Dignity and respect of and for people with disabilities, with a safety network in place to provide support and encourage continued growth when mistakes are made.
- Support for spending money efficiently, and finding the best quality for a reasonable price within and outside of the system.
- Doing whatever it takes to ensure success for the person.
Imagine that any person with a disability and/or the family can call on talented facilitators in their communities to help them develop whole-life plans. These facilitators might be other people with disabilities or family members, community members, or professionals trained to facilitate high quality 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 every individual with a disability is surrounded by people who truly care about him/her, and this group works together in decision-making, planning, plotting and scheming, and occasionally, just having fun. Imagine that human service agencies believe part of their mission is to connect people with disabilities to others in the community based on shared interests. New friendships emerge. Families trust the new friends and the person’s circle of support grows. The individual is now free to go off with friends and have fun—perhaps for the first time in his/her life. The person’s life gets better and better; new friendships mean many new opportunities and experiences ... maybe even a real job for real pay.
Imagine that a person’s whole-life plan, as a clear statement of what the person needs, is the basis for funding allocated directly to the person or a family member. Maybe the person’s plan was developed independent of any agency, so the person can buy the services he/she needs from any agency or from the open market. Or perhaps the plan was created with a particular agency in mind, because the person/family likes the services it has to offer. Regardless, the funding goes directly to the person/family; they’re in charge.
Imagine that whole-life plans are the basis for accountability in the system. The government measures its performance in terms of how well it’s doing in supporting people to get what they say they need. There is sufficient respect and trust in the system that everyone assumes 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 and how you expect to be treated.
Imagine—then get organized!