This material is intended to guide you in your work with persons who have mental retardation. This section introduces the values that should guide you in your work with persons who have mental retardation.
The principle of normalization hold that persons with mental retardation should be supported in leading live which by daily routine, opportunities, expectations, and treatment are as much like other people in their community and of their age as possible. Wolf Wolfensburger, an early advocate for community services for persons with disabilities, developed the term normalization in 1980. Wolfensburger recognized that people with mental retardation are not all alike. They have needs, interests, and abilities that are more like those of people without disabilities than different. An individual’s life experience is strongly affected by how others see him or her. Adults with mental retardation who are supported in doing regular and valued things that other people their age do in the community in which they live are viewed in a positive manner.
Ways in which you can implement the concept of normalization include:
– Assist the individuals you support in buying attractive, well-fitting and affordable but fashionable clothing which is appropriate for their age and gender.
– Assist people individually in going to a neighborhood beauty salon or barber shop for their haircuts. How about a manicure?
– Accompany the persons individually to the bank to cash their paychecks (as opposed to pulling the van up to the drive through and passing five sets of checks and IDs to the teller.)
– Select a site for your group home in a neighborhood and in a house you’d be comfortable living in!
Dignity of Risk
Dignity of Risk means giving people chances to take the risks that go along with ordinary life, which are necessary for personal growth and development. Dignity of Risk is very different from the idea of “protecting” persons with mental retardation by placing them in large institutions or not letting them do the things other people do. Dignity of Risk is a principle that must be applied with care and support, based on each person’s needs, interests and abilities. As staff in a community program, it will be your responsibility to help the individual develop –informed decision-making skills and to provide opportunities and supports that allow individuals to take certain risks and make their own decisions.
What’s Your Role?
You could support the principle of dignity of risk by the following activities:
– Support an individual’s desire to get a job at a local restaurant, grocery store, or day care center.
– Teach an individual to ride the city bus.
– Assist a person in planning a special date.
– Demonstrate–in a caring way–to a concerned parent that his adult child really can walk to the corner store independently and safely for a soda.
Community Presence and Participation
All people with mental retardation and other developmental disabilities belong in the community – in the same schools, neighborhoods, stores, and jobs where other people spend their time. John O’Brien, another advocate for people with disabilities, has described Community Presence as the experience of sharing the ordinary places that define community life. Without focused effort, people with severe handicaps will be separated from everyday settings by segregated facilities, activities, and schedules. Taking people out to ordinary places is the first step, but unless you make the effort, it is possible for the people you support to be present but not actively involved. As program staff, you must take steps to help each individual get involved in activities he wants to do. Partial Participation is better than sitting on the sidelines watching others. and means changing parts of a task or materials used to perform a task to allow an individual with disabilities to participate to the fullest extent that is individually possible. Your role may include breaking a task into manageable steps that the person can complete. An example of partial participation in making the breakfast might be pushing the handle down on the toaster or holding the glass while someone else pours the juice. Both persons with disabilities and their peers without disabilities are more enriched by the challenge and opportunities of living, working and playing side-by-side. The principle of Community Presence and Participation should guide the selection of sites for homes, the placement into jobs, the development of Consumer Service Plans, the program operation and staff scheduling.
What’s Your Role?
You can help an individual experience full participation in the community by:
– Convincing your minister or rabbi that adults with mental retardation should attend regular church or temple services and adult classes, not “special classes” for the disabled.
– Find out what a person likes to do and make arrangements for him to participate with your support.
– Avoid taking people out in large groups because this is not how most people
participate in the community.
– Assist an individual in becoming a volunteer at a local museum, the SPCA, or other community agency, such as Meals on Wheels or the AIDS Ministry.
– Help an individual get a membership to the YMCA where he or she can participate in regular classes for swimming, aerobics, or weight training.
Nonrestrictive Program Alternatives
When individuals with mental retardation live and work in places which show respect for their rights as human beings, they have a better chance of expressing themselves, reaching their goals, and making choices. “Nonrestrictive programming” means supporting people in natural settings and with families and friends by providing flexible, supports that work well for that person. People with mental retardation, should live in comfortable homes in safe neighborhoods, not in “homelike facilities” in a business district or isolated from other people. They should have the option of working a regular job or as part of a small group of people with disabilities (sometimes called a crew or an enclave).
What’s Your Role?
As a staff person, you can provide nonrestrictive program alternatives by:
– Developing a creative way to support an individual in a part-time job despite his
“reputation” as a difficult person.
– Allowing an individual the opportunity to assist in meal preparation for himself and his three roommates rather than doing it yourself because it’s faster.
– Being open to the idea that an individual who has shared a dormitory with eleven other people for fifteen years in a state facility may be a very different person after he moves to a house in the community with his own bedroom and the opportunity for more choices.
A concept which is closely tied to nonrestrictive programming is the use of natural supports available within community settings. It is the responsibility of staff to find and set up flexible ways of providing services to that specific person in community settings that make use of the supports which are naturally available–family, friends, co-workers, neighbors. Rather than replacing these people with paid staff, creative strategies must be found to support and maintain these relationships. This might include teaching the individual specific skills (such as how to use the city bus), changing staff schedules or patterns (such as going to a church or synagogue close to the individual’s original home), or changing the person’s surroundings (such as supporting an individual in moving to live with a non-disabled family friend). Training is most effective when provided to individuals in regular community settings (such as a grocery store, laundromat, city bus, etc.), in part because people with mental retardation may have trouble performing skills they learned in one setting in a different setting. Training in the real setting also makes the most of natural cues, such as a line of people ready to check out at the grocery store or a row of spinning dryers. These cues can help strengthen and maintain a new skill. Any routine services that an individual needs should be arranged through the same sources non-disabled persons use (such as the family doctor, dentist, barber).
What’s Your Role?
You can encourage the use of natural supports by:
– Role-playing and demonstrating conversational skills to assist an individual in getting acquainted with new co-workers.
– Finding a volunteer to accompany a person on a specific activity in which they are both interested, considering also that the individual may have an interest he or she has never had a chance to put into action, such as going to baseball games, hiking, listening to gospel music, taking a cooking class, walking around the neighborhood, taking a drive in the country.
– After noticing the positive bond between an individual and her sister, ask the sister to be involved in and help think of ideas for encouraging them to participate in a new activity together.
As John O’Brien has noted, “Personal choice defines and expresses individual identity. Choice is the experience of growing autonomy in both small, everyday matters, like what to eat or wear, and larger, life defining matters, such as who to live with and what sort of work to do.” An important goal of all service providers should be to provide individuals with opportunities to make both small, everyday choices in the here-and-now as well as bigger, important decisions for the future. This goal must drive the Individual Service Plans that are developed, the way programs operate, the staffing patterns (that is, what staff do and when they do it) and especially, the daily actions of the direct support staff. The choices that are offered should be based on the individual’s abilities, needs, and interests.
Because a person with severe disabilities may not have experience with making or communicating her choices, others might mistakenly think that she doesn’t have a preference or an opinion. Sometimes others worry about the choices the individual might make. It is the responsibility of the program and the staff to provide the person with opportunities to experience making personal choices and with the tools to express her choice.
What’s Your Role?
– You ask the person if he would like toast, cereal, or yogurt and fruit for breakfast instead of telling him, “It’s Thursday so we’re having cereal.”
– You help a young woman select affordable but personal furnishings for her bedroom by taking her to shop at several stores in her price range. Talk to her about her likes and dislikes as well as the practical realities of her budget.
– You develop a visual display of volunteer activities to show the possible choices to individuals in your day support program and explain in concrete terms what activities they would be involved with each choice.
– You write down the daily, weekly, and occasional decisions that a person you support makes and then write down the decisions that are made for the person by others. Consider how and what you can do to increase the individual’s opportunities and independence in making some of these decisions.
Adults with mental retardation, just like the rest of us, are thought of favorably when they are in a position to contribute to the community. Lack of exposure to persons with disabilities and mistaken ideas which follow, often restrict the opportunities people with disabilities’ have to take on roles that are valued in the community. People with disabilities, when given individual assistance, can achieve the respect of others by getting the chance to perform useful and meaningful activities. There is a general tendency to underestimate people with disabilities. Non-disabled persons, even professionals in human services, often focus on the limitations rather than the talents and abilities of people with disabilities. Low expectations can limit people’s opportunities to try new things and interfere with their achievements. Respect requires seeing the individual as a person first. The disability is only one aspect of his life. It is important to remember that people with disabilities want and need the same things others do – love, security, the satisfaction of personal accomplishment, the opportunity to exercise some control over one’s days, environment, and experience, to laugh, and to communicate with others. The way a person experiences these things is different for each, but the desire to have them is the same for everyone.
What’s Your Role?
– When supporting a person who is blind, announce your presence, inform the person prior to touching her if necessary, and don’t rearrange her belongings without telling her.
– Don’t talk about the individuals you support in their presence or talk to another staff member or person in the community as if they weren’t present.
– If you are staff in a group home, you should join the people you support for meals by sitting with them, and eating the same food from the same dishes they routinely use.
– Don’t watch TV, read the newspaper or call your friends while on duty. It’s not your home; it’s the individual’s home! It’s your workplace.
– Every six months, honestly ask yourself, would you like to live in this home or work in this day program?
– Assist the individuals you support to help out in community endeavors. Help them to join neighborhood and civic groups, to be volunteers with other people around town, to vote and to contribute to regular community living.
People with mental retardation and other disabilities have the same human rights as nondisabled people. Like you, they are entitled to enjoy the right to privacy, to marry, to free speech, to live in neighborhoods, to vote. Some people with disabilities may have had a few of their legal rights limited through the appointment of a guardian or another legal process. Due to a lack of understanding about people with mental retardation, it is not unusual for an individual to have had certain limitations placed on him such as managing his own money, voting for his governor, even picking out his own clothes–things which he is perfectly capable of handling with individual supports. As an employee of a community agency providing services to people with mental retardation, you should be aware of these basic human rights, as well as any specific human rights policies followed by your agency. Ask your supervisor to give you a copy and explain your agency’s policy to you.
What’s Your Role?
– You should carefully read the human rights policy of the agency for which you work. List any questions and discuss them with your supervisor.
– At least once a year, sit down with the people you support one at a time and explain their rights to them in a way that is meaningful to each person–sign language, simple spoken language, or even using pictures to illustrate each right.
– You speak up when you feel other staff are routinely violating a person’s right to privacy or other rights.
Zero reject is the concept that all people with developmental disabilities belong in the community. No matter how severe an individual’s disability or challenging her behavior may be, it is possible to develop flexible, individualized supports to help meet her needs. It is the responsibility of the program and staff to devise plans to meet an individual’s needs and to help her gain or keep skills or change her behaviors. Community programs used to have very strict entrance requirements, as well as high expectations for allowing people to continue to stay in their program. People who failed to adapt or to meet these criteria went unserved or lost their place in the program. Our understanding of the varied ways in which people with disabilities communicate has grown, and we now know about the lasting negative affects of living in an institution for a long time. At the same time, the profession has become aware that many of our early methods, especially behavior management, didn’t really work and even “dehumanized” people with mental retardation. As we begin to truly recognize the people we support as individuals, our ability to do a good job of teaching and supporting them in community settings grows. Individuals with severe disabilities, who were not considered for the first wave of deinstitutionalization, are now living productive and fulfilling lives in the community. Zero reject recognizes that it is the responsibility of the community provider agency to develop the supports a person needs to succeed in the community, rather than expect the person to change before she can get those services.
What’s Your Role?
– The day program in which you work is admitting a young woman with a history of yelling and sometimes, hurting others. Additional staff have been hired, and training has been provided in “positive behavioral supports.” You commit mentally to working with your team in supporting this individual instead of complaining, “She doesn’t belong here.”
– You work in a supported living program that is screening individuals for placement. Following a long bout with the flu, one individual has lost many of the self-help skills he once had. Other provider agency staff feel he’ll be motivated to learn to care for himself again based on their history with him. You feel it’s worth the effort to assist in this and recommend he be admitted.
– The members of your team adjust your work schedules to offer more staff support to a person who has been acting more aggressively following the loss of a parent.