Abstract
People with disabilities want a sense of control over their living arrangements that is unachievable within most current residential service systems. There is a new approach to housing and support that enables people with intensive assistance needs to live in their own homes. Eight validated guidelines for adopting this approach are described. A story of one individual’s move from an institution to an apartment is shared. Readers are encouraged to move beyond traditional thinking about residential services and embrace the notion that all people, regardless of ability, want and deserve the dignity of choice and control over their homes and lives.
"We all have the power to listen to the voices that are seldom heard. If we choose to make the time to learn, to listen, and to struggle with the pain and frustration that disempowered people feel, we will see new visions, feel new energy and find new hope for our future.”- Jack Pearpoint
Most people with disabilities who are recipients of residential services live in large institutions, medical or psychiatric facilities, group homes, adult foster care arrangements, or in supervised apartments. For people who live in these settings, their associations and the daily pattern of their lives are dictated by where they live. The tendency is to group people based on their assistance needs, thus, the level and type of assistance received is also determined by where they live. If assistance needs change or if the person is unable to adapt or conform to the culture and rules of the household, he or she is moved to another residence.
Despite good intentions, these residential services do not adequately meet the needs of the people they serve. People are isolated from their families and communities and deprived of ordinary life experiences. Abuse and neglect are commonplace and social interaction is limited to others with disabilities. Staff members are often overworked and underpaid. Attention to individual desires, needs, choices, and preferences is impossible. Meeting the needs of the majority remains a priority over satisfying the desires and needs of any one individual. Housing and residential assistance are frequently dictated by government and agency preferences rather than by the needs and desires of persons with disabilities.
This article seeks to enhance awareness of the possibilities for choice and control over the homes and lives of people for whom these options historically were unthinkable. The information is based on 13 years of research and experience in assisting people to leave institutional settings and live in their own homes. A discussion of eight guidelines that are essential in assisting individuals to live in homes of their own follows. The guidelines include: 1) recognizing that people with and without disabilities have similar dreams to live in their own homes, 2) assuming that everyone can communicate, 3) acknowledging readiness, 4) placing the person at the center of the planning process, 5) focusing on capacity, 6) providing the right amount of assistance to meet individual needs, 7) using technology, and 8) using community resources. The article concludes with John’s story, which illustrates how one individual with intensive assistance needs was able to move from a large institution to his own home.
Similar to most adults, people with disabilities typically want and need a home of their own where they can be themselves and make choices about what they do, with whom, and when. Choosing and controlling one's home is a basic act of personal autonomy. When a person controls the place in which he or she lives, the agency responsible for providing assistance no longer has ownership over the space; the individual does. As needs change, assistance can be modified accordingly in the person’s home. People are not relocated when the need for assistance or a new service arises, and are thus better able to maintain stable and typical connections to their communities. In this manner, living in one’s home serves as the platform for community membership.
Throughout the world, individuals with disabilities, advocates, and innovative service providers have made significant moves from placing people in institutions and group homes to creating housing and supports that permit all people, including those with the most intensive assistance needs, to live in homes of their own choosing. This trend is part of a broader shift from traditional, agency-controlled services toward a focus on support and resources that encourages personal control and full community inclusion. To implement this new approach, the following eight guidelines must be adopted.
Recognize that people have similar dreams. People with and without disabilities typically share the same desires, hopes, and dreams to live in homes they control. People with disabilities want opportunities to enjoy culturally typical and age-appropriate experiences. Acknowledging the similarity of dreams provides important guidance for supporting people with disabilities to live in their own homes.
Assume that everyone can communicate. Sometimes it is difficult to hear and understand what a person is saying, particularly when he or she does not speak with words. However, those who assist people with disabilities must begin with the assumption that everyone can communicate and assure that a form of communication that others can understand is established. People who know an individual can act as interpreters. Computers and other technology are often useful in providing a voice to people who do not communicate in typical ways.
Acknowledge readiness. When assistance is individually tailored to meet a person’s needs and desires, prerequisite skills are not necessary to live in a home of one’s own. If people are unable to complete a task or activity, the task or activity can be done for them. A new approach acknowledges that, with the right assistance, people are ready now.
Place the person at the center of the planning process. Supporting a person to gain control over his or her life includes providing the necessary assistance for that individual to envision and plan for a desirable future. The person’s vision for the future may look different from the vision others have for that person. It is essential, however, that the person’s exact desires and needs be heard, and that he or she remains at the center of the process.
Focus on capacity. Those who provide assistance to individuals with disabilities must shift their focus from looking at deficits or lack of skills, to nurturing people’s abilities, gifts, and talents. Assistance must be provided for things people cannot do, and opportunities created for individuals to learn how to do what they want. People must be encouraged to decide which skills are important to them, to explore and build on their capacities, and to ask for assistance when needed.
Provide an appropriate amount of assistance to meet individual needs. The amount of assistance varies among people with disabilities. Some may require occasional assistance, such as help in preparing meals. Others need access to assistance only while they sleep, such as to change positions or take medication during the night. Still others may require intensive assistance to carry out everyday tasks. There are a variety of ways to respond to a person’s assistance needs. For example, individuals who need intensive assistance may choose to live with someone who provides support, schedule assistance at specific times throughout the day, ask for help as needed, or design a plan that includes a combination of these options.
Use technology. Simple technology such as push button phones, beepers, computers, switches, intercom systems, service animals, and tape recorders may be used to assist people with more intensive needs. Such devices can provide an alternative to 24-hour personal assistance for some individuals.
Use community resources. When technology cannot satisfy support concerns, or if having a person respond to an individual’s assistance needs is preferable, neighbors, friends, relatives and housemates may be enlisted to assist. The key question is, "What technology combined with formal and informal assistance is necessary to assure that a person's support needs and personal preferences are respected?" Request assistance, expertise, and advice from all who may be in a position to help, including friends, neighbors, co-workers, family members, and other community members. Helpful questions for individuals and support persons to ask include, "Who do we know who can help?", "Who do we know who will help us think about it, and who will ask for their assistance?"
The following story illustrates how these guidelines were adopted to enable one person to live in his own apartment and enjoy a rich life as a valued member of his community.
John was born in the early 1940s in a small rural community. With an early diagnosis of cerebral palsy and a seizure disorder, John had no purposeful movement in his limbs, did not eat independently or speak, and was incontinent. At the age of sixteen, John moved to an institution for people with disabilities. He remained institutionalized for the next 32 years.
John is a friendly and outgoing person who enjoys baseball and having the daily newspaper read aloud. He communicates with limited sounds to indicate his wants and needs and uses finger gestures for “yes” or “no.” He was not considered capable of learning, working, or living outside the institution. In the institution, John shared a bedroom with 20 others. Despite good intentions, John developed severe contractures in his limbs. He choked frequently and the staff often lost patience with the length of time it took to help him finish his meals. John’s body weight was consistently below normal.
Despite significant disabilities and complex medical needs, there were people in John’s life who acknowledged his dream to have his own home and who believed that, with the right assistance, he was ready. In 1980, John and his family decided that he would leave the institution and live near his family’s community. A team of people was assembled to assist John to establish a new home. This planning team included John, a representative from a local service agency, John’s brothers, a worker from the institution, a nurse familiar with John’s complex medical needs, a neighbor who had known John when he was a child, and a carpenter who could assist with making John’s future home accessible. Some team members were professionals who were paid to be in John’s life, while others were family, friends, or acquaintances.
The team gathered several times to plan with John, who was not only present but at the center of the process and responsible for steering the group in the direction he chose. Team members assisted John in scheduling and setting the agenda for each gathering. Through facial expressions, sounds, and gestures, John shared his desires and preferences with the team. The team’s purpose was to develop a vision of the ideal arrangement for John: a home of his own where he would receive the assistance he needed.
John wanted to live close to a metropolitan area where accessible public transportation was available. In order to ensure that John was being heard, the team helped him to obtain a computer and devise a system of communication that everyone could understand. John preferred to retire late in the evenings, woke frequently during the night, and chose to sleep late in the mornings. He wanted a housemate who would provide assistance, so the team helped him to locate a college student who kept a similar schedule. John had a love for animals and acquired a dog who was trained to perform simple tasks.
With John’s love of baseball, he began to frequent a local pub that televised baseball games in the hope of meeting other baseball fans. John wanted to become more proficient with his computer, so the team assisted him to attend computer classes through his community’s adult education center. John lives in his own apartment, which he shares with a college student who provides assistance during the night and early mornings. His service dog assists him to use public transportation to move about in his community. With his computer, John can summon help in an emergency, allowing him to spend time alone for the first time in his life. John has two friends in his neighborhood who share his love of baseball, and they attend games together.
People with disabilities state that they want to acquire the stability, control, and independence possible when living in a home of their own. It is essential that individuals with disabilities and their families have genuine choices and control over where they live. A series of eight validated guidelines are presented for fulfilling that dream. Service systems built around specialized residential services must become more responsive to individuals with disabilities by satisfying assistance needs, responding to personal preferences, and ensuring safe and desirable housing. Systems must also shift the focus from filling "beds" to assisting people to have homes. Professionals are challenged to adopt a new approach to housing and supports for people with disabilities which entail assisting people to become valued members of their communities by living in their own apartments or homes.
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