• An individual perspective. What does community living mean from the viewpoint of each person?

 
• A service system perspective. What are the best practices in the design of service systems and supports to enable people with disabilities to fully participate in community life?

 
• A community perspective. What roles do community members play in the lives of people with disabilities and what contributions do people with disabilities make to community life?

 
• A cross-disability perspective. What are commonalities across different movements (e.g., independent living, disability rights) that can bring us together?

 
• A policy perspective. How can federal, state, and local governments support the opportunity for people to live and participate in the community?

 
• A societal change perspective. What changes are necessary to improve the lives of all people, including people with disabilities?

This article examines directions in community living from a service systems perspective. It compares and contrasts the traditional residential system for adults in the United States with an emerging approach to supports called an "individualized," "person-centered," or housing/support strategy" approach. While this approach incorporates aspects of the "community," "independent living," "individual," and "societal change" perspectives, the primary emphasis is how adults with disabilities can be supported better through changes in the design of service and support systems.

The Residential Continuum and the LRE Principle

The primary principle for the design of services and supports for people with developmental disabilities today is the principle of the least restrictive environment, together with its operation as a continuum.

The continuum can be classified as a line running from the "most restrictive" environment to the "least restrictive environment." The assumption is that people with the most severe disabilities will be served at the "most restrictive" end (i.e., independent or semi-independent living). As people acquire more skills, they are expected to "graduate" or "transition" to more independent settings.

For people with severe disabilities especially, the continuum concept has serious problems:

• People with severe disabilities get relegated to the "most restrictive" end of the continuum.

 
• The most restrictive placements, such as institution, are not necessary.

 
• The continuum implies people need to leave their homes every time they acquire new skills.

 
• The most restrictive placements do not prepare people for the least restrictive placements.

 
• The continuum approach concentrates resources at the most restrictive end instead of toward typical homes.

 
• The continuum concept confuses restrictions of people's rights with intensity of their support and service needs.

 
• The continuum directs attention to physical settings rather than to the services and supports people need to be integrated in the community.

The community living program in most states is primarily a "facility-based" approach to serving people with developmental disabilities. The program revolves around the living arrangements, or facility, rather than around individuals. Thus, it is limited in both its flexibility and individualization.

By "facility-based," we mean that most community living programs have the following elements:

• Agency owned or rented facility Since providers own or rent the residential setting, they ultimately control who lives there. As O'Brien and Lyle (1986) point out, under this arrangement, "the person is a guest in someone else's home."

• Licensed facilities. When agencies own and operate residential facilities, licensing is appropriate. However, by its nature, licensing often tends to limit people's choices and places decision-making power in the hands of people who do not live there.

• Agency staffed. The staff are hired, paid, and supervised by the agency. Staff members are employment by and accountable to the agency, not the people receiving services. The staff member's relationships with the people is defined by conditions of employment set between the agency and the staff.

• Staffing ratio based on the group. Staffing ratios and level of supervision are based on the group, not on individuals. To the extent that an individual has more or less intensive needs than others at the facility, he or she may not "fit into the program."

• Linkage of housing and support. People must live in the provider's facility to receive support services. Providers can be reimbursed for services only if the person lives in the community living arrangement.

• Core funding tied to the facility. The funding is based on the facility and not the individual. Funding would not follow the individual if he or she moved to a new home.

• Weak relationship between individual planning and funding. The rate-setting and individual planning processes proceed relatively independently.

• Facility classification based on supervision needs. Facilities are primarily classified as providing either 24-hour supervision or less than 24-hour supervision. Such a classification detracts from the question "What supports do people need to live in the community?"

During a national search for programs demonstrating promising practices in supporting people with severe disabilities, we identified a newly emerging approach to supporting adults with developmental disabilities in the community. This approach has been called a "nonfacility-based," "individualized," "person-centered," or "housing/support service" approach.

This approach explicitly rejects the continuum concept, and the underlying LRE principle, as the basis for service design. Instead, it is based on the principle that adults have a right to live in a home in the community with whatever supports are necessary. Adoption of this principle on a large-scale basis would demand a fundamental change in the design of "residential services."

Four of the key characteristics of this approach contrast sharply with the facility-based approach described above.

Separation of Housing and Support Services

One of the central features of this approach is the separation of housing and support. A manual prepared by Options in Community Living, a community support agency in Madison, Wisconsin, describes why it is important to separate housing and support:

...one agency should not provide both housing and support services. While we often advise and assist clients in finding, renting, and furnishing their apartments, Options no longer becomes the leaseholder or the landlord for client apartments. We want our clients to feel both control over and responsibility for their own living spaces. We also believe that receiving Options' services should not affect where clients live; our clients have a greater choice of living situations and know that beginning, ending, or changing their relationship with us will not put them under pressure to move. This policy also frees us from the time-consuming and sometimes conflicting relationships involved in being a landlord. (Johnson, 1986)

There are several different kinds of housing arrangements. These include housing owned or rented in a person's own name; housing bought or rented by the parent or guardian on behalf of the person (but not occupied by the parent or guardian); housing jointly owned or rented by two or more people, one or more of whom has a developmental disability; and cooperative living arrangement. In addition, people with disabilities can live in existing homes or households (e.g., traditional foster home) or in housing owned or rented by a corporation other than the service provider. To the extent feasible, people with disabilities should have access to the same range of safe and decent housing arrangements available to others in the community.

Support strategies must be individualized and flexible. These support strategies may include paid support, such as live-in, on-call, or drop-in staff employed by an agency and hired specifically to work with the person; paid roommates or companions who may be self-employed; an attendant hired by the person with a disability; or a person who lives in the neighborhood and receives payment for some services, among others. Support strategies also include other approaches such as the use of physical adaptations (e.g., automatic door openers, emergency response systems), routine modifications (e.g., listening to a tape recorder), and the fostering of unpaid support.

One's Own Home

Another central feature stressed by a "housing/support" approach is the importance of one's own home. As opposed to residing in an agency facility, the emphasis is on a person living in his or her own home. First and foremost the phrase "one's own home" reflects feelings of "being in a safe haven," "of being oneself," "of being comfortable and at ease," "of making one's own decision." "of belonging," and "of being in my/our place." These feelings of home are more likely to be associated with situations where people have a substantial say over their housing situation.

Increasingly, legal sole and joint home-ownership and leasing are becoming options for more people with disabilities. Instead of developing agency facilities, people with disabilities are living in places of their own.

Individual Assessment, Planning, and Funding

Another central aspect of this approach is a close tie among the three components of individual assessment, services planning, and funding.

All significant decisions in this approach are based on the individual person. This is a substantial departure from the typical residential development process where most of the significant decisions about housing and services (e.g., the size of the arrangement, the selection of the site location, the type of housing, the number of people, the level of disability, the number of staff members, the level of supervision, and the operating budget of the facility) are made prior to involvement of the person with a disability.

This new approach to assessment creates a picture of the uniqueness of the person "in order to determine what forms of help the community needs to plan, arrange, provide, and monitor to meet his or her needs" (Brost, et al; 1984). Each plan will be unique, taking into account not only the characteristics of the person, but also the person's current life circumstances and the availability of alternative support strategies.

In this approach, financial issues are an integral part of the planning process for each individual. In common language, "funding is tied to the individual" (i.e., available wherever the person may live, usable for whatever services the individual needs to wants, and varying in amount based on the individual).

Choices and Decision-Making

This approach is also a step in the direction of greater control by people with disabilities in areas such as housing and services. In many ways, it represents the application of the fundamental premises of the independent living movement to people with developmental disabilities. In this approach, choices and decision-making by people with disabilities are of critical importance.

These aspects of choice and decision-making extend not only to day- to-day events, but also to major life decisions. These include where and with whom supports will be provided, among others. For examples, if a person is dissatisfied with his or her support worker(s), he or she can change service workers or agencies without being uprooted from living in her or his own home. As another examples, people with disabilities can play a much greater role in selecting, hiring, and firing their individual support workers.

Full implementation of this approach will require that we become better listeners to the choices and preferences of people, including people who communicate in ways other than speech. In addition, if meaningful choices and decision-making are to occur, it is important that people with disabilities be accorded their full and equal place in this society.

Future Directions

We are at the crossroads today in the development of residential services. The approach described herein has been pioneered by agencies such as Options in Community Living in Wisconsin and Centennial Developmental Services in Colorado. Selected aspects of this approach can also be found in a number of programs funded by the Title XIX home and community-based Medicaid waiver, in Canada's service brokerage model, in state-funded programs such as Michigan's supported independence program, and in the independent living and mental health movements. We need to learn from these experiences and must work together to ensure that people with severe disabilities will have a right to both a home and to the services and supports they need. At the same time, we must also continue to examine the limitations of a service system approach to people's lives.

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