by Bonnie Shoultz, Center on Human Policy
For many people with mental retardation, home has meant one of two options: living with family members or living with groups of other people with disabilities. Either way, it has often meant living in a home not of one's own, and having other people make most of the decisions about mealtimes, recreation, roommates, and almost all other aspects of life.
Increasingly, parents and adults with mental retardation are pursuing help with setting up, for the individual, a "real" home, a home like other people create for themselves in our society. People with disabilities are beginning to be hard when they ask that agencies and service systems rethink their practices and regulations, especially those that interfere with adults' dreams about homes of their won. this report will discuss some dimensions of these new directions in community living. It reflects the latest thinking about ways adults with mental retardation can have the same choices of places to live as other people and be supported and fully included in their communities.
"Home" = Housing + Supports
In traditional approaches to community living for adults with mental retardation, housing and support were bundled together. In many states, a continuum of residential services was developed. People who needed the most services were placed in Medicaid-funded public and private institutions or in community-based intermediate care facilities. People who needed fewer services, but were seen as needing supervision, might be placed in group homes or apartment programs. Very little service was available to people living with their families or in their own apartments or houses. Apartment or home living, therefore, was viewed as "inappropriate" for anyone who needed more support than was available at that end of the continuum.
Seeing housing and support as separate issues frees everyone involved to think more creatively. Both issues are crucial, but looking at them separately permits each person (and his or her family and service providers) more choices. Choices might include deciding where and with whom the person will live, working out what kinds of supports the person would need and many other aspects of ordinary living.
Types and Locations of Housing
Adults with mental retardation and other disabilities should have access to the kinds and locations of housing that other community members do. This can include apartments, condominiums, rented or owned house, mobile homes, units in housing cooperatives or co-housing communities, and so on. Similarly, people should have access to neighborhoods that reflect their needs and wishes. This could mean a home that is close to work, or in the person's ethnic community, or close to family members or friends. It could even mean living in a more isolated area, if privacy is highly valued.
Choosing One's Living Companion(s)
Choices about living companions should include choices about all the people with whom a person will live, whether they are paid to live there or not. Thus, a person might wish to live with one or more roommates who also have a disability; if so, they should choose each other. A person might wish to live with a nondisabled family member, with a family in the community, with a nondisabled helper, with a spouse or romantic partner, or with combinations of these possibilities.
The options can be developed creatively by thinking about the options typical community members use in setting up a household. Furthermore, consideration must be given first to what the person wants or would prefer, and what makes sense in the context of the person's needs for support.
Promoting Home Ownership
Ownership of one's home need not mean buying or mortgaging a house, although it might. Instead, let us use the word "ownership" more broadly, to refer to the idea that home is where a person feels he or she belongs. Belonging usually means things like, "I can stay here as long as I like, as long as I pay the rent," and "My home reflects who I am and what I do in life." It means choosing a desired neighborhood, a preferred type of housing, which people one will live with, and what community resources one wants nearby. It means finding a place that matches one's preferences, and it usually means having one's name on the lease.
We have visited places across the country where people with mental retardation and other disabilities feel ownership in this sense. We have spoken with family members who have commented, "For the first time, I've been able to stay overnight in her place," and "I love to come and visit him here, and I'm involved in his life in a different way now." We have visited agencies that see their role as assisting people in having their own homes, either by providing or arranging the support each person needs, by helping in the home-finding process, or both.
Financing for Housing
Organizations (and family members) that know how to obtain funding for group care and agency-operated programs often have little experience in helping people have homes of their own. Bill Mitchell, in a July 1990 Q&A, describes many important resources for financial support for housing, including rental housing. Community housing resources and organizations should be used, rather than having disability organizations provide the housing. Some of these resources are readily available in states and communities, and others must be developed or nurtured along.
Strategies that Mitchell and others (see resource list) propose include the use of various types of housing subsidies, formation of and inclusion in housing cooperatives and mutual housing associations, the use of trusts for typical housing, and creative use of low-income tax credits and other financing. In some communities, rents are low enough that one or two people, even though their income is limited, can afford a decent place. In other communities, housing subsidies may be needed. These can be financed through state mental retardation offices or through federal Section 8 vouchers or certificates, but creating or using them may require collaborative action and advocacy.
Individualized and Flexible Supports
Living in one's own home, for many adults with mental retardation and other disabilities, requires supports that are designed for (and with) the person and flexible enough to respond to the person's changing needs and wishes. Thinking about support in this way means that people with complex needs or severe disabilities can also have homes of their own.
The amount and types of support will vary greatly from person to person. For some people, support may simply mean that family, friends or neighbors will check in on the person, with or without pay. This is similar to the kinds of support we all need. For others, the supports might include a mixture of services and informal assistance. One person might have a paid roommate, personal care attendants who come in, medical and therapeutic oversight and services, family members, friends, and a service coordinator who works with the person to ensure that everything is coordinated and the paper work is completed. Another might have some technological aids (emergency call system, tape player for reminders, a TDD, etc.) along with a staff member who lives very close by. The combination and types of support that might be designed are limited only by the imagination.
Financing for Supports
As is true for the financing of housing, many support services can be funded if people are creative in making use of or modifying what already exists and, if needed, in developing new types of financing.
Some potential sources of funding include:
Assistive technology supports can be financed through a variety of sources. further, 31 states have special assistive technology projects. For more information, consult your state's Developmental Disabilities Planning Council and the resources listed at the end of this report.
While much still remains to be done to develop funding for support services sot that people can live in homes of their own, a start has been made. Organizations in several states have worked to redirect the existing funding streams, to change regulations, and to identify and remove state and local barriers so that individualized and flexible supports could be adequately financed for each person involved. Around the country, more and more organizations of parents and people with disabilities and provider agencies are actively involved in efforts to develop funding for supports.
Hurdles to Overcome
Changing to a housing and supports approach typically means that everyone involved undergoes major changes, both in their thinking and in how they do things. A few of the hurdles that can get in the way of change are discussed below.
Service providers and families, partly because of the continuum tradition, may have difficulty separating housing and support in their minds. In many states, funding criteria still link them. Service agencies may own and manage many properties in which people are living, and may have fears about the mortgages on which they are paying. Communities may have little decent, safe, affordable and accessible housing. If present, parents and providers may not know how to obtain it.
Ways of thinking about people may have been shaped by the continuum model. It may therefore be difficult for people to think of someone who has severe disabilities and medical complications as able to living in his or her own home, because of how support needs have been linked with facility types.
Considerations of agency convenience and efficiency also may be allowed to override personal preference. Too often, with the traditional models of residential services, people are moved or made to live with people they do not know or like because of someone else's needs.
Another hurdle to overcome is the "program" hurdle. Agencies are experienced in developing programs to meet felt needs. But the housing and supports approach is not a program. Instead, it means changes in how people are approached, in the relationship between clients and the agency, and in many other areas. Adding a "supportive living" program to an agency's array of programs is not the same as when an agency moves to a housing and supports approach.
The housing and supports approach means thinking about each person's wants and preferences in all the areas discussed above, and about how housing and support could be designed to meet these. It calls into question the conventional assumptions about what people with mental retardation need to live in the community. More and more communities, people with disabilities, their parents, agencies, and other community sectors, are committing themselves to making the changes necessary, examining their values, and strategizing about the hurdles they face, so that they can better support people with disabilities in homes of their own.
Enders, A. & Hall, M. (1990). Assistive technology sourcebook. Washington, DC: RESNA. (To obtain, try your state's assistive technology project or write to RESNA, 1101 Connecticut Ave., NW, Washington, DC 20036.)
Hemp, R., Youngwerth, C., Haasen, K., & Braddock, D. (1992). Financing assistive technology: An annotated bibliography. Chicago: University of Illinois at Chicago. (To obtain, contact the University of Illinois at Chicago, University Affiliated Program, 1640 West Roosevelt Road, Chicago, Illinois 60608.)
Housing Technical Assistance Project. (1989). Financing housing for people with disabilities. The Arc, National Association of Home Builders, and NAHB National Research Center; Washington, D.C. (To obtain, contact National Association of Home Builders, 15th and M Sts., NW, Washington, D.C. 20005.)
Johnson, T.Z. (1985). Belonging to the community. Madison, WI: Options in Community Living. (To obtain, contact Options in Community Living, 22 North Second Street, Madison, Wis. 53704.)
Mitchell, B. (1990). Obtaining financial support for housing for people with mental retardation. Q&A. The Arc, Arlington, Texas.
O'Connor, S. & Racino, J.A. (1989). New directions in housing for people with severe disabilities: A collection of resource materials. Syracuse, N.Y.: Center on Human Policy.
Racino, J. A., Walker, P., O'Connor, S., & Taylor, S.J. (Eds.). (in press). Housing, support, and community: Choices and strategies for adults with disabilities. Baltimore: Paul H. Brookes Publishing Co.
Shoultz, B. (Ed.). (1989 November). Community living for adults. Syracuse, NY: Center on Human Policy, Syracuse University.
Smith, G. A. (1990, November). Supported living: New directions in services to people with developmental disabilities. Alexandria, VA: National Association of State Mental Retardation Program Directors, Inc. (To obtain, write to NASMRPD, Inc., 1112 Oronoco Street, Alexandria, VA 22314).
Taylor, S. J., Bogdan, R., & Racino, J. A. (Eds.). (1991). Life in the community: Case studies of organizations supporting people with disabilities. Baltimore: Paul H. Brookes Publishing Co.
For a list of resources on community integration, write to Rachael Zubal, Center on Human Policy, 200 Huntington Hall, Syracuse, NY 13244-2340 or call (315) 443-3851.
The ideas in this Community Integration Report were developed by a number of people at the Center on Human Policy, especially Julie Ann Racino and Steve Taylor, along with many people in the field, including people with disabilities, parents, service providers, and others who are working to create better services for people.
This article was prepared by the Research and Training Center on Community Integration, Center on Human Policy, Division of Special Education and Rehabilitation, School of Education, Syracuse University, with support from the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research, through Cooperative Agreement H133B00003-90. No endorsement by the U.S. Department of Education of the opinions expressed herein should be inferred.
1010 Wayne Ave. Suite 650
Silver Spring, MD 20910