Support circles, clusters and networks

"You gotta have friends!" was the slogan of the growing Extend-A-Family organization in the early 1980s. Children with disabilities—and their families—really need friends. Extend-A-Family pioneered informal social supports for families who had children with disabilities. A natural family with a disabled child was paired with a host family who could welcome the disabled child into their home. There were benefits for all. The child made some new friends in a family setting. The parents could have some respite. The host family gained some new insights and the satisfaction of helping people in need. Genuine friendships could form. And foundations were laid for more general community inclusion.

For a vulnerable adult, having people in your life who choose to be your friends—as well as family who have to be there, or professionals and support workers who are paid to be there--can make all the difference. A support network can provide some continuity through the nightmares of frightening transition times, including the loss of parents.

The critical need for "informal social supports" has become clearer, as governments and agencies no longer make longterm commitments to support people with lifelong disabilities, and as more of them make individualized plans for lives in the community.

There are all sorts of barriers in the way of such friendships evolving naturally. People with autism may face the highest barriers, even among the most enlightened people and in the best of times. Ordinary people cannot usually understand the communication of those who have the label of autism. They may also think, wrongly, that people with autism don’t want others near them or relating to them. People with autism may not be visibly handicapped: their apparent health and strength may not evoke immediate compassion and caring impulses. In contrast, their occasional failures to control their turbulent sensory systems and movement disorders can be bizarre or even frightening. Ordinary community people may hesitate to say "Hello" to an adult with a disability like autism for fear that the greeting might provoke disturbed behaviour.

A relationship-based strategy is the most effective way of supporting people with autism—or who have other disabilities--to have a good life. A support circle, support cluster or support network (whatever the term) can provide supportive relationships for a person with special needs. A circle of friends who really know the focus person can valuably supplement and vitally continue the efforts of families. Friends can keep asking: "Is this good for Jennifer, Jessica, Joshua or Julian?" and "What does Rachel or Robert think about it?" They can ensure that decisions are made and resources are obtained that do really help. Together they may have creative and empowering ideas that might not occur to families or agency staff.

Some particular models of support groups may differ in composition, emphasis and roles.

1. Some may include formal (paid) support people as well as informal friends, while others may exclude those who are paid to provide support or services.
2. Some may act mostly at a critical time in the focus person’s life—the transition from school to adulthood, or when leaving an institution to live in the community, or leaving a group home to set up an individualized plan, or in the wake of a parent’s death. Other support groups may see their roles as continuously evolving throughout the person’s life.
3. Support groups may vary in size. Most common may be those with 5 to 8 members. But some people may have clusters or networks of 30 to 50 friends, perhaps with an inner core that is most involved.
4. Most useful are support groups that represent a variety of ages, skills and interests, so there is balance and succession through the decades of a focus person’s life.
5. While most support networks will be informal and have no legal standing or powers, there are at least two types of support networks in Canada that have such formal roles and responsibilities.

It is wonderful when such friendships develop informally. But, for various reasons, it helps to use some formal facilitation to form a support circle or cluster or network around a person with special needs. A skilled facilitator can:

1. Interpret the focus person’s needs in ways that ordinary people understand;
2. Try to recruit all likely people as friends and not be hurt by their refusal or hesitation as parents would be;
3. Explain to prospective members of clusters or networks that they will not be overwhelmed by their commitment and that they can relate to and support one another as friends of the focus person.

We present more information about four Canadian organizations that promote support groups or circles of friends for people with disabilities.

CIRCLES, MAPs and PATHs

Support circles and clusters of friends have helped to make individual or person-centred plans for adults with disabilities, especially in the 1990s those leaving institutions to live in their home communities.

Person-centred planning, also known as personal futures planning, shifts the focus away from the system to the individual. The ideas and approaches have been developed in the work of Marsha Forest, Jack Pearpoint and Judith Snow of Toronto. There are three basic features:

1. The person’s everyday activities are the focus of planning;
2. Family and connections within the community are more important than the service system; and
3. Plans must be made by the person and a group of people (a circle, cluster or network) who know the person well and care about her or him.

Person-centred planning includes such strategies as Making Action Plans (MAPS) and for Planning Alternative Tomorrows with Hope (PLAN) and Circle of Friends.

Circle of Friends is a tool to gather a supportive community around the person with a disability. There are four concentric circles. At the core is the circle of intimacy. The second, the circle of friendship, includes good friends and close relatives. The third, the circle of participation, includes people and organizations that the focus person is connected with. The fourth circle is the circle of exchange and includes those are paid to be in the person’s life. Members of the whole circle meet regularly to celebrate successes, discuss problems, and brainstorm solutions.

Making Action Plans or MAPS is a tool to help in gathering information to be used in planning actions to move the focus person into her/his future. There are eight questions: What is a MAP? What is the person’s history? What is her/his dream? What is her/his nightmare? Who is the person? What are the person’s gifts or strengths? What is the best course of action to obtain the dream and avoid the nightmare?

The way in which circles of friends can be mobilized to provide effective support for a person with disabilities is illustrated in the PATH Training Video, developed by Jack Pearpoint, John O'Brien and Marsha Forest of Inclusion Press in 1994. An eight-step process is shown in developing a detailed action plan for the future of a disabled young man named Joe. The video is both inspirational and practical. It shows how a network of people committed to a particular idea or person can define new goals that are functional and community-based and then find creative ways of achieving them.

PATH usually involves a group of volunteer friends with two facilitators--one to keep discussions on time and on track, and the other to be a graphic recorder. The first step is for the group of friends to describe the future of their dreams for the focus person in positive images—say in five years’ time--without regard to limitations. Then the group imagines the future in more detail, describing significant accomplishments that will be achieved on the way to the future. Then the status quo is described, people are enrolled to join the pathfinder on his path, and ways to build strength are recognized. Planning are made for actions to be taken in the next few months, and finally, commitments are made towards making a first step, with specific actions, dates and people identified.

Inclusion Press of Toronto offers books, videos and other materials for learning and training about Circles of Friends, MAPS, PATH, Creative Problem Solving, and Tools for Teams.
http://www.inclusion.com/tools.PATH.MAPS.Circles.html

Support Clusters Network of Ontario

http://www.supportclusters.on.ca/about.html
An organization formed in the mid-1990s and based in Kitchener, Ontario, SCN provides training for systems of support that really work for vulnerable people with special needs. "A Support Cluster is a group of people who join to provide support for and plan with a vulnerable individual... A vehicle for change and life enhancement, it involves bringing people together to build a foundation of trust, knowledge and understanding that will facilitate... partnerships necessary for constructing a life of meaning around the...individual... Everyone who is part of a Support Cluster can give and receive support and thus benefit from the experience."

Two other models of support networks are more formal and concerned with longterm continuity for the person with special needs. They could help families who hesitate to begin more individualized planning with their son or daughter who is disabled—because they may lack confidence in taking the initiative and undertaking all the responsibilities, and also worry about continuity and sustainability. What is the use, parents might say, of setting up a pattern of supports and quality of life that others will not continue after we die? How often do families and parents make compromises, in what they really believe their disabled adult wants and would thrive in, for these reasons?

MICROBOARDS

Microboards are an innovation developed in the Greater Vancouver area since 1989. A microboard is a small group of committed family and friends who join a person with challenges to form a non-profit society which is registered according to provincial law. Together they address the person’s planning and support needs in an empowering way that is tailored to that individual’s needs and circumstances. The more complex a person’s needs are, the more important it is that supports are customized and individualized to meet those needs.

The ideal size of a microboard is between 5 and 7 members, including the person with challenges, and the qualifications are good relationships with, knowledge of, and commitment to the person. The role of the microboard is to ensure that the person becomes part of the fabric of the community, thus safeguarding the person’s future.

As a legally incorporated entity, a microboard in British Columbia can receive and share responsibility for spending individualized support dollars for which the disabled person may be eligible. Its legal status can also help to provide continuity when parents die or become incapacitated.

More information may be found on the Vela Microboards’ website at http://www.microboard.org

PERSONAL SUPPORT NETWORKS

Circles or networks of support to last a lifetime have been realized by the remarkable organization known as PLAN for PLANNED LIFETIME ADVOCACY NETWORK.

Starting in Burnaby BC in 1989 with 15 members, PLAN now serves 3,200 families in British Columbia. The PLAN idea is being taken up by PLAN affiliates in cities and regions across Canada and the United States and is attracting attention in other countries from Australia to Scotland.

PLAN is a charitable organization that supports the efforts of parents to provide for the future of their disabled relatives. Founded and led by parents of people with disabilities, PLAN believes that relationships are the best guarantee of a safe and secure future--the number of caring and committed friends, family members, neighbours and supporters actively involved in a person’s life. The most important way is by facilitating the creation of a personal support network around each person. PLAN promises lifetime members that a personal support network will ensure that the person with a disability will have a good life and a safe and secure

The Personal Network is a group of people who contribute now to the quality of life of the focus person, in preparation for their role in the future when the parents are not there. Typically they are not paid to be members of the network, and their involvement is based on caring, friendship, love and a commitment to work together for and with the focus person. They carry out functions that are hard for the focus person to manage alone. This may mean practical help with housing, employment and recreation—or developing closer ties to neighbours and the community.

Personal networks ensure a safe future for the focus person and contribute to quality of life by:

• Keeping key players well informed
• Advocating on behalf of the focus person /
• Providing links to others in the community
• Securing and monitoring supports and services
• Providing a forum for Network members to support one another
• Acting as a resource for executors and trustees
• Providing potential executors and trustees
• Acting as representative in supported decision-making
• Spending time with the focus person
• Planning, dreaming, and having fun

PLAN’s commitment and services to lifetime members include:

• Lifetime involvement with the focus person, monitoring and advocating for programs and services
• Advisory role for executors and trustees
• Maintenance of Personal Network
• Monitoring of guardianship agreements
• A personal future plan, with ten hours of consultation
• Quarterly newsletters, information bulletins and workshops

PLAN does not accept government money. Half its revenue comes from membership dues and consulting fees paid by families and from book royalties. The other half comes from charitable foundations and corporate donors.

The PLAN model is explained in new book by Al Etmanski, A Good Life—for you and your relative with a disability (2000). Families are guided to set up personal networks and plan the future security of their relatives with disabilities through seven steps and 15 family worksheets, The seven steps are:

• Sharing your Vision
• Building Relationships
• Creating a Home
• Making a Contribution
• Ensuring Choice
• Developing Financial Security
• Securing Your Plan

Among the specific issues covered are:

• creating a special needs trust
• discovering the hidden gifts of people with disabilities
• letting go - the toughest job for parents
• ending the isolation and loneliness of individuals with disabilities
• accumulating and maximizing wealth
• reducing dependence on government assistance
• self determination and individualized funding
• alternatives to formal, legal guardianship
• seeing beyond group homes - creating home as sanctuary and haven
• will and estate planning
• confronting death and other mortal fears

For more about the book A Good Life, click on http://www.agoodlife.org/

PLAN has a website at http://www.plan.ca/

Suite 260-3665 Kingsway, Vancouver, BC, CANADA, V5R 5W2
Phone: 604-439-9566 or toll free in BC 1-888-696.PLAN
Fax: 604-439-7001
E-mail: inquiries@plan.ca

PLAN’s quarterly magazine, Good Lifetimes, edited by Karen Melberg Schwier of Saskatoon, is now printed as a 4-page section in ABILITIES: Canada’s Lifestyle Magazine for People with Disabilities.

Other interesting stories about the PLAN model may be found at the following URLs:

- Story of a family using PLAN strategy from Vancouver Sun of April 2000
http://www.agoodlife.org/when.htm

- Reprint of Globe and Mail article about PLAN in August 1998
http://www.acl.on.ca/aging/globeandmail.html

- Family Tax & Trust Initiatives: A coalition to promote fairness in the tax system for individuals with disabilities and their families
http://www.hearts-and-soul.org/Tax_and_Trust/postings.htm

-Turning 19, Decision Making for Adults with serious disabilities on the VELA Microboard Association’s site http://www.microboard.org/nl1turn19.html

PLAN’s success has attracted widespread attention. So PLAN of BC is sharing its experience with and mentoring new organizations that are being formed in Ontario regions as well as elsewhere in Canada and the United States. There are groups in Halifax, Montreal, Ottawa-Carleton, Winnipeg, Calgary, Whitehorse, New Jersey, Boston and Seattle, among others.

In our own region, Planned Lifetime Networks (Waterloo-Wellington-Oxford) was incorporated in September 2000 and is now a PLAN affiliate. For information about PLN (WWO) click on:
http://www.ont-autism.uoguelph.ca/plnwwinfo.shtml

PLN is hosting the PLN Listserv to connect all people who are interested in personal support networks to achieve good lives and secure futures for their relatives with disabilities. For more information and to request connection to the PLN Listserv click on:
http://www.ont-autism.uoguelph.ca/plnlist.shtml

See also Microboards: design and development, by David Wetherow at http://www.community-works.net/articles/microboard.htm