Homes should be typical for the community: In most communities, most people live in apartments, condominiums, houses, cooperative housing projects, or mobile homes, not in specially built facilities designed or remodeled for groups of people with similar needs. People with severe disabilities should have the same range of typical housing options available to them as do other community members, and any of these housing options can be called "home."
Homes should be typical in size for anyone with like wants and interests: Depending on their racial and ethnic group membership, single adults in the United States typically live with one or two roommates of their choice or with their families. Married people typically live in homes of their own. People with disabilities, whether single or married, should be supported to live in homes by themselves, with one or two roommates, with their parents or extended family, or with spouses, depending on their own interests and wishes. People make any of these choices should not risk loss of material or human service system support.
Homes should be in localities that make sense for the people who will live in them: People have many rationales for choosing the neighborhood they want to live in. Some want to live near their families, near their jobs, or near particular kinds of community facilities. Others may want to have some distance from people, and prefer to live in a sparsely populated area where they have plenty of open space. People with disabilities should have choices about where in a community they prefer to live, and should be helped to find housing in areas that most closely match their preferences.
Residential Agency Supports
A major new role of the residential agency is to support: Administrators of residential agencies, and the state developmental disabilities offices that fund them, traditionally view the residential agency as a provider (i.e., planner, organizer, controller, deliverer) of a set of services. From this perspective, the need to maintain efficient and effective service delivery, convenience, and accountability requires the organization to maintain control in the form of decision-making authority over what happens to each of the people it serves. The person is often expected to adapt or subordinate his or her needs and wishes to fit the resources they agency make available. When this is not possible, or when the person's needs change, the person may be discharged or transferred to another setting.
True individualization, on the other hand, requires agencies to assume a supportive role. This role means that the agency assists the individual to fulfill his or her own hopes and wishes, to develop skills and interests, to attain wellness and safety, and to participate fully in community life, which should include relationships with friends and family members. This assistance or support is given with the full involvement of the person in the planning and decision-making, and with awareness and respect for his or her choices or preferences.
Another major role of a residential agency should be to commit itself to the people it supports: As mentioned above, residential agencies traditionally require individuals to fit agency criteria, and may discharge or transfer people whose needs or wishes do not mesh with the agency expectations.
The new way of thinking, on the other hand, stems from the basic principle of personal and agency commitment to each individual. Residential, Inc, for example, puts major emphasis on recruiting and supporting service planners, staff members who will make a personal commitment to one person with whom they work. The agency's commitment is that no one supported by the agency will lost support for as long as it is wanted, and that changing needs mean changes in the intensity or type of support. But agency commitment to the person, while seen as necessary, is not viewed as enough. Each person also needs people who have a personal commitment to him or her, and the agency must help to find those people.
The residential support staff may have new roles: Traditionally, the residential support staff have been viewed as direct service providers whose job was to carry out the individual's program plan, to manage the household operations and routines, to provide personal care, and to develop caring relationships with all the people for whom they were responsible. With individualized services, the role of the residential support staff may be entirely different, even though some of the responsibilities or tasks may be the same.
One agency may envision the essential role of the residential support staff as discovering what the person wants and needs and assisting that person in attaining it. In another agency, the residential support staff may be asked to "dream with" the person and to support the person in realizing his or her dreams. Still another may speak of empowering the individual through support that encourages self-determination and self-control.
The residential staff working for any of these agencies may engage in the following types of activities: teaching daily living skills; assisting in problem-solving; providing personal care; assisting the person to recruit, hire, supervise, or terminate care attendant; supporting the person's participation in community activities or organizations; encouraging the development of relationships with neighbors, coworkers, and fellow members of organizations or classes; assisting in creating and following meaningful daily routines; taking a vacation with the person; household maintenance activities; and other such undertakings.
It should be evident that many of these are the same types of tasks performed by staff in more traditional agencies. The difference is that the person receiving support is seen as the focal agency--his or her needs, hopes and wishes are what are supported by the staff person's work, not the needs and requirements of the residential agency. Often, the person receiving support and the staff person or persons working with him or her are seen as team. Together they decide what hours the staff person(s) will work and what the staff person will do.
Support is given when and where it is needed: In many conventional agencies, people receive services at times and places that are convenient for the agency or that meet certification requirements but which result in untypical daily routines and rhythms. Such services may include personal care routines, meals, and household maintenance activities such as shopping, cleaning, and laundry, all of which are necessary for living in the community. In conventional agencies, however, where the recipients of services are grouped together, we too often find that skills are taught out of context and that meals and personal care routines are conducted at the times when the staff can be available (e.g., bathing at 8:00 p.m. so that others can bathe later on; packing lunches in shifts; having to do one's laundry on a set schedule so as not to conflict with others' laundry days). Often, especially in group settings, people spend a great deal of time waiting for the next activity to occur.
When support are individualized, people's daily routines fit their own rhythms and preferences. People need not arise two and a half hours before work just so that they can all have a turn in the bathroom or in the kitchen, not do they have to bathe at a time when they might prefer to be away or watching television. People can make individual schedules for the day, based on their own wishes and needs, and can make spontaneous decisions about leisure activities. Whether or not a person has a severe disability has little impact, in a person-centered living arrangement, on the number of timing of his or her routines, because the staff and the person will have worked together to develop a schedule based on his or her preferences and needs.
"Programming" takes places naturally and within normal daily routines: Residential agencies that provide individualized supports for people tend to feel that learning should take place in the settings, and at the times, when the skills to be acquired will be used. Thus, instead of teaching money-handling with play or real money in the home, the support staff may teach these skills at the bank or in a store or restaurant. Cooking for oneself will be learned in the context of meal preparation, and may involved preparation (through full or partial participation) of all aspect of the meal. Instead of learning to prepare part of a salad for four or six people, the person will help with the whole salad and the main dish for himself and his roommate, for example. Likewise, cleaning and laundry and other household maintenance activities will be learned and practiced at times and in the places where they will need to be used.
The residential support staff are deployed differently than in conventional agencies: In conventional agencies, the staff who support people usually work according to a shift schedule; depending on the type of program, they may work eight- hour shifts or shifts of shorter duration (e.g., stopping in on a supported apartments for a few hours two evenings a week). The staff are there based on schedules developed by the agency, and may be present many more hours a week than are needed by a large number of people served by the agency, just because these people have not moved to a less restrictive place in the continuum of services the agency offers.
Programs offering individualized support deploy staff in ways that make sense to the staff and the people supported. Options in Community Living and Centennial Developmental Services have created a team concept, whereby two or more staff members support each person and come to know him or her very well. Residential, Inc., tries to have on primary person, the service planner, who supports the person but is backed up by another person whose role is similar to the service planner's but who can push the agency and the state system in ways the service planner cannot. In each of these agencies, the paid staff works with the person to determine the types, times, and intensity of support the person will need or want. The agency sees it role as supporting those arrangements, not imposing other arrangements on people.
Support for staff members is high in agencies offering individualized supports: Agencies offering individualized living supports find many ways to support their staff. They tend to involve their staff in planning and decision-making at a number of levels, giving staff members a sense of control over their work. They tend, because they know that situations constantly change, to encourage and support creativity and flexibility. They tend to see the agency's role as that of enabler; if a person (staff member or person being supported) needs something, the agency's job is to cut through the red tape and other barriers that might prevent the need being met. They create an atmosphere of mutual support, so that the staff grows to rely on each other and on the agency. The staff training may be organized based on expressed needs of the staff, often on an individualized basis so that the staff learn how to work with and support one particular person rather than a generic "person with physical/medical/behavioral needs or disabilities."
Relationships with family members, neighbors, and friends are promoted and supported: Too often, human service agencies have forced people into a dependent "client" role that has the effect of cutting them off from family and typical community members. Often, even their friendships with other people with disabilities are not supported. Today, we know that there are limits to what service agencies can do; agencies can meet some needs, such as the need for material support, coordination of services, or assistance with daily living, but cannot meet the need for connectedness in the community. This need can only be met through family, neighbor, and friend relationships and through association with people having common interests. Agencies that are aware of people's needs for connectedness or belonging will find ways of assisting people to make and maintain relationships of many kinds outside of the human service system. This sounds "messy" and difficult, from the agency's point of view, because it requires new kinds of efforts and skills, a willingness to set aside plans and schedules to have time for a friends, neighbor, or family member, and letting-go of exclusive knowledge of or control over a person.
Conclusion
The difference between the "person-centered" or "housing/support strategy" approach and traditional residential services approaches are evident. Agencies across the United States and Canada are making the process, that everyone, regardless of the severity or complexity of disability, can live and thrive in the community.