Michael Peterson 1997
There are many ways that we can learn to build
supports around one another in our neighborhoods and communities.
Many forces in our society have conspired to minimize the forums
that we have to be with and support one another. In work with
children and adults with disabilities, however, we are seeing
new forms of caring and support emerge that draws on the best
of our history and yet provides some new lessons. Person-centered
planning, circles of support, making connections to associations,
and citizen advocacy all provide unique ways where people can
help other people when they themselves have support and assistance.
The following article describes some of these approaches. A shortened
version of this article was published in the July, 1996, edition
of The Responsive Community, the journal of the Communitarian
Some 8 years ago, Tim was about to leave public
school where he had been in a separate special education class
for his school career. The options for Tim in Midland, Michigan,
the hometown of Dow Chemical, were to continue to live with his
parents or enter a group home and work at a sheltered workshop.
Tim's parents, longtime members of this community, decided this
was not enough, that Tim should be a part of the community and
have the opportunity to live in his own apartment or home. After
much discussion, a circle of support, composed of friends, family,
community members, and human service providers was created for
to help Tim plan and get the assistance he needed. Circle members
located an available house and, with some creative financing and
arrangements for a live-in roomate who would also provide needed
help, Tim, a person with severe mental retardation, no reading
skills, and little language, moved into his own home. Tim's circle
has continued to meet for six years and a sense of family and
community has developed as they have solved problems, struggled,
and celebrated. Tim began to get to know neighbors and obtained
a job as a courier for a local organization. The dream of Tim
being a member of the community is being realized.
Tim's success has impacted on the lives of other people in the community. Circles have been developed for 90 individuals who need special help to live in the community. Prominent local citizens that include the mayor and a legislator are members of circles; circles are directly touching the lives of some 5% of the population of this small town.
The impacts continue to expand. Midland people are engaging in ongoing efforts to share what they have learned and their continuing struggles and questions. For several years now they have sponosred monthly visitations sessions that allow others to come and see how they are supporting challenged people in their own homes in the community. They have also formed an Institute for Community Inclusion to provide training and sponsored conferences. A visit to Midland helps one see quickly that this is not just another bureaucratic and technical solution to problems. The key ingredient that makes their efforts work is the sense of caring, fun, celebration, and community that has been built among numbers of people and their continued struggle in learning and growing. Tim has come to be at the center of providing a vision of how communities can be.
Tim's story is important because it illustrates
that people with significant challenges can be part of their communities
and that people are willing to help if asked and themselves provided
support. Part of the challenge of building community in our country
is to directly address our decisions to isolate and segregate
substantial numbers of people at costs that are high, both socially
and fiscally. In The Psychological Sense of Community Seymour
Sarasson described the negative impact of exclusion and segregation
on health and well-being of society. Given that people with disabilities
intersect all the common focal points of such segregation--race,
age, sex, socio-economic status, the efforts that are occurring
provide important social learning laboratories for the larger
culture that may have important implications for many arenas of
In this country, with the coming of the industrial revolution, people with disabilities have been separated from their communities. Institutions established for support and training in the 19th century became virtual warehouses to protect society from undesirables by the early 20th century. As the social hygiene movement collapsed in the wake of the atrocities of World War II, the foundation was laid for a movements that would first work to improve institutions followed by a national effort of "deinstitutionalization" and movement into "community-based programs".
As people with disabilities began to have the opportunity to be in special programs that were at least located in the community (special schools, group homes, sheltered workshops), they and their families and allies have had a growing opportunity to grapple personally, socially, and programmatically with the issues of separation and isolation. Over time, it became clear that people with disabilities, though in the community, have yet to become real members of the community. Based on this realization, creative people throughout the country have begun began to develop efforts to promote community membership and participation and build community that include building people to people connections; person and family-centered planning; family support; inclusive schooling; supported community living; and employment with supports. As these efforts are being undertaken, people increasingly realize that they are contributing to the social capital and fabric of the communities in which they live for all people and are beginning to use language and concepts of inclusive communities, whole communities, welcoming the stranger, and celebration of the gifts of all people.
For people with disabilities, the need for
efforts to build social connections and support is often particularly
critical as their total lives are often associated with programs
in which they are totally segregated from contact with the larger
community. Several years ago, Judith Snow was living in a nursing
home in Ontario, Canada. Judith was literally in danger of dying.
A few people she knew became alarmed about this and drew together
a circle of people, dubbed the "Joshua Committee" by
Judith, who were willing to deal with the issues and help her
work towards a valued life. Over time, Judith stabilized medically,
moved from the nursing home into own apartment, and now is an
articulate speaker and writer who travels the globe sharing ideas
based on her experience. She and others in her network have helped
to shape thinking and action about person-centered planning and
circles of supports.
Circles of support are intentional groups of family, friends, neighbors, and human services personnel who are requested by an individual, often aided by a facilitator, to plan and provide ongoing support and assistance. Members of circles meet periodically and share in providing help to an individual. While circles and their members do focus on doing needed tasks, they feel and act more like a gathering of family and friends than like a formal meeting of agency personnel. Recently, a student of mine attended Tim's "circle meeting" that ended up being a pool party and celebration.
Often, people spend time and energy in building a circle for disconnected individuals. Since many people are disconnected in our communities, whether urban, suburban, or rural, this occurs frequently when individuals live in poverty or have attended programs that separate them from typical relationships. For example, two circles are presently being formed around two individuals who have attended schools for only students with disabilities in Detroit. One has a severe disability having been a victim of abuse when he was seven years old. The other individual has become connected with a local gang as a "wannabe". In both cases these individuals are isolated from all but their immediate family. So initial work is focussing on helping to identify people in the community who are willing to consider helping--ministers, big brothers, local high school students. Fortunately, people are often surprisingly willing to assist in such efforts when it is clear that they do not have the total responsibility for an individual but that this will be shared among the group. It appears that, in part, people do this in part because it brings meaning and additional sense of community to their own lives.
Several other strategies are being used to build relationships and connections --intentional efforts to support friendships, identifying community advocates, or through facilitating connections with community associations. In Texas, the Developmental Disabilities Council has funded a series of statewide projects to promote friendships between people with disabilities and members of the community. Typically, a paid facilitator works to identify people in the community who might be willing to meet, spend time with, and provide some support to a person with a disability, identifies people with disabilities who are interested in making such connections, facilitates introductions and assists planning to get started, and provides support and assistance if needed and requested as the relationships develop. The Council has developed a videotape and booklet describing the results of some of these efforts called Just Friends. Additional stories from this project are documented in a booklet, Community Connections.. David is a typical member of the conservative community of Midland, Texas, who decided to befriend a young adult named John, a mentally retarded person who had lived in an institution all of his life and had recently moved into his own home. John joined David and his family in many events--basketball games, Mexican food meals at their house, hot dogs at John's house. David remarked that "John reminds me to stop and smell the roses. I get so caught up in the daily rush. Then John calls and I remember: it's the little things, like friendship that make life worth it."
In similar efforts, people in Pennsylvania have been recruited to be acommunity advocate --a person who makes a commitment to relationship and supporting the person in whatever is needed. Such commitments frequently results in friendships and ongoing relationships. Additionally, however, community advocates may find themselves providing support and assistance in individual problems and struggles. A.J. Hildebrand in a book by David Schwartz called Crossing the river: creating a conceptual revolution in community and disability discusses community advocacy as a . . .
community effort, through which ordinary, competent citizens represent the interests and promote the well-being of other citizens who are vulnerable and at risk of social isolation. Citizen advocates strive to understand and act on another person's interests . . . (p. 37).
Such commitments frequently results in friendships and ongoing relationships. Additionally, however, community advocates may find themselves providing support and assistance in individual problems and struggles. Hildebrand tells of his work to make connections on behalf of Michael, an individual who had lived in an institution for 17 years until he moved to a group home and later "graduated" to a semi-independent living apartment where he lived with his new wife, Harriet. Michael had run into numerous financial problems dealing with poor handling of a small inheritance and problems with SSI payments. Hildebrand eventually approached Dennis Hargrove, a managing partner with the largest accounting firm in Beaver County, Pennsylvania. Dennis agreed to be a community advocate for Michael. Soon he was deeply involved in sorting out the complex fiscal dilemmas stating that "I have been at a lot of difficult meetings. . . where real mismanagement has been discovered by audits. . . but this meeting was as tense as any meeting I've ever been in. I have seen immorality in business, but this sort of immorality boggles the mind." Dennis continued in other areas to provide support and assistance to Michael.
Other efforts for building social supports for people with disabilities has been through making connections with community associations. In Chicago's Logan Square area, in which a facilitator worked to connect people with disabilities to individuals and to support their involvement in community associations--block clubs, churches, social and recreational organizations. In Community building in Logan Square, a publication available from the Center for Urban Affairs and Policy Research at Northwestern University, Mary McConnell describes the impacts, challenges, and learning of this effort. She tells an illustrative story of Lorraine, a woman in her 60's who lived in a group home. . .
She used to attend (church) services with her mother. The Episcopal Church of the Advent has welcomed Lorraine to its congregation -- not to a "special" service for disabled people, but as a regular member. Lorraine's introduction to the church came about through Mary and her mother. When Mary was first asked if she would take Lorraine to church, she was reluctant to take on the responsibility on a regular basis. 'Once I met Lorraine, there was no way I could not take her to church," Mary says now, praising her friends enthusiasm and her genuine ways. . . Lorraine has been welcomes by the pastor and the rest of the congregation. The Sunday services and other church activities have become a high point in her life (Community building in Logan Square, p. 11)
Begun in the late 80's, this effort has become an integrated into the ongoing program of the Logan Square Neighborhood Association. Clearly, leaders of the neighborhood association see this process as part of building and enhancing the social capital of their community.
Growing efforts are occurring throughout the country using these multiple strategies for building community and social supports. In Seattle a local neighborhood association is also sponsoring efforts to connect people in the neighborhood with people with disabilities. In Denver, the Community Guide Project is being developed and implemented in which connections and mentorships between at risk youth and members of local church members are being developed and efforts targeted towards building a sense of community among them. In Detroit's Empowerment Zone area, the Neighborhood-based Personal Supports Project is utilizing all of these social support strategies. Since relationship and membership is at the root of community and a healthy lifestyle, these strategies are being used across life domains--with children and families, in schools, in the workplace.
Person-centered planning is a method of planning supports to people who have substantial life challenges that is driven by the dreams and hopes of the person or family rather than by a focus on deficits. A number variations are being implemented as an alternative to bureaucratized service planning processes--personal futures planning, McGill Action Planning System (MAPS) Essential Futures Planning. People who are willing to contribute some time and energy to providing support to a person gather in a typical community place--often the home of the person or a church or community center. The invitations regarding who to invite are controlled by the person or family with support and assistance from a facilitator. Most often members will be combinations of parents, family, friends, community contacts like people from church or synagogue, and human service providers. The planning process involves group discussion and responses to a series of questions all centered around the "focus person". A facilitator guides the process and a recorder uses colored pens to list what is being said in response to each question on a butcher paper pad. These are posted around the room so everyone can see. Often simple pictures and graphics are included. While the topic is serious, the tone is informal, fun, relaxed. The group discusses in order the following questions: What is your history?? What are your dreams?? What are your nightmares?? Who are you?? What do you need? What is the action plan?? Out of this comes a plan and commitment of a circle of people to move ahead in a way that builds on strengths and moves towards a vision of a better life. For people accustomed to the deficit and blaming paradigms of most human service agencies, the sense of support and capacity to dream again often brings tears as well as laughter.
Families with children with special health
care needs, once automatically institutionalized, are now provided
a range of supports to keep their children at home--public cash
payments, in-home services such as nurses or aides. The health
care profession is seeking to develop partnerships with such families
in "family-centered health care", a 10 year practice
and policy initiative with important implications for health care
as a whole. Physicians and nurses are learning to work with families
as mutually respectful partners who listen to one another. Families
are being provided opportunities to provide input into policies
and procedures of hospitals and state departments of public health.
Increasingly, families are joining with faculty in universities
and medical schools in co-teaching courses for professionals to
help them learn and understand how to focus on the needs, perspectives,
fears, culture of the family.
Other components of an array of services for supporting families include--respite care, consultation, assistance with extra expenses. A small but important social experiment has been occurring in an increasing number of states who are providing a family support subsidy --typically a monthly cash payment to families with children who have severe disabilities that may be spent in any way that the family wishes. The ease and flexibility of this program has caused many questions about its impact. Multiple and ongoing evaluations in Michigan and other states are illustrating the cost effectiveness in reducing family stress and promoting the integrity of the family unit.
Perhaps most important are the growing number of programs and networks throughout the country in which families help other families. The Family Support Network in Michigan, for example, operates out of the Michigan Department of Public Health. A small staff of parents of children with special health care needs provide training and support to families throughout the state who meet periodically to provide support to one another and other families. Families know first hand the emotional issues and needs and can also help one another in traversing the often intimidating and uncoordinated world of the medical and human services systems.
These programs have grown out of a dialogue between families and professionals and a willingness to invest in partnership that provides important models. In Michigan, the program was developed by Bev Crider, a parent of a child with a severe disability, in collaboration with professionals in the state department and with support by an informal network of other parents who had functioned as a community of support for one another over many years. Her child, Meredith, was the first child considered to be "medically fragile" to attend a public school in Michigan. Many have followed.
In school, most students with disabilities
must leave mainstream classes to get help--those with milder disabilities
in a "resource room", others in separate classes or
schools only for children with disabilities. Starting in the late
1980's, however, a number of states that include Kentucky, New
Hampshire, Vermont, Texas, Indiana, and Michigan began to experiment
with "inclusive education". In schools throughout the
United States, children with disabilities are increasingly leaving
their separate classes and are being provided opportunity to learn
with other students in "regular classes", where support
is provided both to children and teachers.
Initially, inclusive education and school reform efforts have moved along separate, if somewhat complementary tracks. Increasingly, the connections are being seen and made. In January of 1996, a first national conference on inclusive education and school reform was held in a partnership effort of organizations involved in the two arenas. As schools throughout the country engage in substantive reform efforts, they are embracing inclusive education and inviting children with disabilities to "return home". Inclusive education is being seen as one integral and necessary component of overall school reform whose implications for supporting diversity in education goes far beyond issues of disability per se.
When inclusive education is implemented with reasonable planning and supports to teachers, the results are often striking. Students with disabilities develop friendships and improve their skills. Simultaneously, non-disabled students are engage in real-life character development, problem-solving, and "emotional learning". Teachers learn to put into practical effect teaching strategies designed to provide effective instruction, build a community of learners, and respond to multiple learning styles and abilities. While highly controversial, growing amounts of research is indicating that inclusive education contributes in multiple ways to the learning of both students with and without disabilities.
In a recent book published by the Association for Supervision and Curriculum Development (ASCD) entitled Creating an inclusive school, Rosalind and Jo Vargo share the experiences of their daughter Ro, an individual with a severe disability whose language abilities are very limited, who drools, "walks funny", and "is a messy eater" (according to her friends in school). Ro has been included in regular preschool and school for 12 years and has been accepted as a member of the school, being voted "Best Friend" by 25 of her classmates when she was in the fourth grade. These parents report the following observations about the interactions of their daughter with other students that are illustrative of the experiences of many across the country. Two examples will suffice from their commentary. In kindergarten, a mother called to invite Ro to a birthday party. Rosland asked, " . . . do you know why other kids like her?", to which the mother responded, "Well, I can only speak for my daughter Kristen. she says she likes Ro's smile. She's someone you can really talk to . . I think kids like Ro because they can just be themselves around her. Years later, Ro, like many children, had her difficulties adjusting to the transition from elementary to middle school. Eventually , a student named Mauricha connected with her and they became close friends. One evening Mauricha told Mrs. Varga that "lots of teachers think I'm friends with Ro because it bets me more attention. That isn't true. The truth is, I need her more than she needs me. When Ro is down, I can make her smile. But when I'm down, she always makes me smile. It is a kind of bond."
The implications for learning and education of inclusive education are just beginning to be explored as are the implications of this type of schooling for community building in our larger society. We know, however, through recent research in brain-based learning (See Caine and Caine, Making connections, that learning occurs best when individuals have a sense of support and relationship and when they see meaning and purpose in learning activities. From related brain research, we know that emotional intelligence, the capacity to deal with our emotions, feelings, and relationships is at least as important as typical cognitive content for life success. Inclusive education provides a unique opportunity to contribute to building such learning strategies into the fabric of the school, and, consequentially, the community of which the school is an important part.
Likewise, throughout the country, adults with disabilities are being supported in owning their own homes or living in apartments with a range of assistance and support rather than having their options limited to "home like" programs such as group homes and nursing homes that separate them from relationships in the community. Tim's story in Midland, Michigan, that was told above is one of many increasingly occurring throughout the country. As with inclusive schooling, needs for supports and services are being disconnected from the place in which they are provided. Additionally, creative financing efforts are being utilized that utilize public funds, funding by parents, and traditional housing financing mechanisms. In Midland, for example, the David Reece Fund assists people with disabilities in purchasing, leasing, and managing their own homes. On behalf of the individual, staff handle payment of taxes and maintain of the property. Supports for the individual range from periodic assistance with budgeting to full-time personnel for individuals with high health care needs. In Midland, public funds provide such assistance through a community mental health contract with a local non-profit, the Midland Arc.
Similarly, various assistance is being provided on community jobs--from assistive technology to intensive training and problem-solving supports--helping people with disabilities move from unemployment or work in "sheltered workshops", industries that employ only people with disabilities, often only at token wages. People like Tim, for example, would have typically worked in a sheltered workshop at simple tasks of packaging or other light industry jobs and paid only a few dollars per week. Instead, he is working as a courier for a non-profit agency in town where he has opportunities to interact with the many people he knows in town. In the 1980's, a national initiative for implementing "supported employment" occurred. The idea was simple--provide people intensive training and ongoing support to help them maintain employment as they need it. This was designed to help people learn actual jobs and adapt where skills would be used; further, ongoing support--from retraining to counseling and problem-solving--would assist in helping people keep their jobs and advance once employed. Individuals previously thought to be unemployable throughout the country are working in typical businesses. In some cases, these efforts have been connected to other industry related efforts at empowerment and building community in the work place.
Out of these many and multiple efforts, new images of human services systems reform are emerging that are truly person and family-centered, connecting publicly funded services to the efforts of members of the community caring for one another. In New Hampshire, the Self-determination Project is operating in the Keene region to "redefine what community could be for persons with disabilities". Utilizing a block grant and capitation funding mechanism, this project is working to develop a model of services and supports that is driven directly by the life goals of the person or family, rather than the system. In St. Paul, Minnesota, the Person-centered Agency Design project worked with three organizations to built their services around the individualized goals and dreams of the people they serve. These and related efforts have the potential to develop a new service and funding model critical in an era of heightened human needs and reduced fiscal resources.
While these efforts are being effective at
reasonable costs, they are hardly universal. Within the disabilities
"field" they are often controversial. The movement from
clinically and system-oriented human services to thinking of building
supports for community is a long road to travel. New ways of thinking
and organizing ideas; loosening of the grip on power and prestige
associated with control over separate programs is necessary; partnership,
teamwork, support, and caring must become watchwords. Neither
do all people involved in "community inclusion" of people
with disabilities see the connection to larger community building
agendas. The result is that there are virtually no communities
who have incorporated each of these innovations into the fabric
of their community life.
However, the potential impact of these approaches in community building is enormous. A new vision that combines concepts of responsibility, community, caring, support, and self-determination is being developed. When a community provides supports that allow an individual with a very severe disability to be a functioning and valued member of the community, many important impacts often occur. People see that there is hope. It can happen.
We may apply these principles, practices, and policies of community inclusion to other groups and individuals moving beyond categorical approaches towards building an effective community support system. The issues of isolation and strategies being used in disability could well be applied with older people, dysfunctional families, at risk youth, and others. As such efforts expand, there is potential that the nature of relationships at multiple levels is impacted by these efforts--moving beyond those immediately helped, as in Tim's story, to an impact on the social fabric of the larger community and its institutions. What communities need is an effective support system that is cross-categorical but is committed to providing person and family-centered, inclusive supports for all its members through partnerships between government, business, and community members and neighbors. These approaches particularly have potential for community building in poor urban and rural communities and neighborhoods (See John Kretzmann and McKnight, Community building from the inside out, available from the Center for Urban Affairs and Policy Research at Northwestern University) and provide important learning laboratories that should be carefully studied.
In every state in the country there is a cadre
of individuals moving this direction, people of courage, creativity,
and integrity who may form natural partnerships with those in
the larger community building agenda. Several organizations provide
helpful connecting points: The Association of Persons with Severe
Handicaps (TASH) has provided substantial leadership in inclusive
schooling and communities; The Community Place, an organization
in Manchester, Connecticut, serves intentionally as a connector
and sharer of stories (see their Whole Community Catalog)
; Inclusion Press out of Toronto is helpful as are some programs
associated with the national network of University Affiliated
Programs (contacts via the American Association of University
Affiliated Programs. For any of the specific areas listed above
there are many resources available throughout the country.
The inclusion and support of people with disabilities as valued members of their communities is making these communities better. The spirit of the Americans with Disabilities Act is being seen rather than the prescriptive letter of the law. This is particularly occurring in those communities in which the issue of community and support is consciously being addressed, where inclusion is more than technical, and community enhances or replaces adversarial advocacy. There is a need for those involved in community building broadly and those involved in community building around people with disabilities to establish personal and organizational linkages in this work. For example, people involved in community inclusion efforts may be invited to specifically share ideas and strategies in local community building initiatives--eg. Empowerment Zones, local school improvement intiatives, conferences of the communitarian network. Community building leaders may approach local, state, or national leadership of disability groups involved in community inclusion efforts and provide information about the larger community building efforts and explore practical methods of mutually reinforcing work. Community inclusion strategies may be closely studied by community building leaders to identify implications for the larger community--the impact of including people with disabilities as a signal of reducing segregation and isolation and building greater commitment for caring and support, the potential use of strategies of support and inclusion in different ways as a method of enhancing the social capital for communities, and exploration of policy implications. Movement in the development of such partnerships will increase potential to use resources and energies effectively to build community that is inclusive for all its members.