What is supported living? It is a values driven movement and practice; the core values being choice and inclusion. It holds that everyone has a right to live in a home of their choosing and to live, work, recreate, and socialize in the community regardless of the severity of their disability. Although this all sounds wonderful and idealistic, but supported living places great stress on practical measures that allow people with disabilities to move into the general community, one person at a time. It doesn’t matter if that person has quadriplegic cerebral palsy, autism with behavior challenges, Downs’s syndrome with no speech; all are welcomed by a supported living agency.
What is meant by choice? This means that a person with developmental disabilities has the same right to choose how her life will be lived as do you or I. This goes from basic things like what she eats for supper to deciding to marry and have children. Of course, choice is limited by reality. We all might like to live in a mansion and be movie stars but lack of money and talent prevents most of us from living that life. The problem with most people with disabilities, however, is not that they dream too big but that they dream too small. All their lives others have subtly or not so subtly told them that they can’t do this and they can’t do that. Often they have lived cut off from everyday life so that they have very little idea of the options that are out there. Their dreams may be as modest as one young man’s desire to learn to cross the street. Supported living helps people to learn to do the things they are capable of learning and it supports them in those areas where they need help. This will change as the person learns and changes.
Lets take a look at how this works in one person’s life. Lucy is a bubbly twenty one-year-old. Her family has recently moved to Whittier. She has a sister in college and a brother who is married and living on the East Coast. There is a family dog called Puddles. Community Inclusion Action (of CIA as most people call it) has been called because Lucy’s father has gotten a very good job offer that will take him to Egypt and he and Lucy’s mother want to make the move but Lucy does not.
A community specialist from CIA meets informally with Lucy and her mother. They chat and Ben, the community specialist, explains a little about the values and practices of CIA.
Lucy’s mother is a bit dubious, fearing for the safely of her daughter, but Lucy is very enthusiastic. Ben asks Lucy and her mother if it would be OK if he brought over another staff person, Sally, who would take Lucy to a picnic that weekend. Mom consents and Lucy is both excited and afraid.
Lucy meets Sally and they go to the local Burger King for a coke. Sally notes to herself that Lucy does not know how to order or to pay for her order. Lucy likes Sally very much and feels more comfortable about going to the picnic.
Lucy goes to the picnic and meets other CIA staff and also people with disabilities and their friends and family. With a little prompting from Sally, Lucy agrees to meet another young woman, Tiffany for a look at the local WMCA.
There are several meetings with Lucy and her family until finally, Lucy’s parents feel comfortable about her living in her own place. A hunt for roommates ensues and Lucy chooses a young married couple just a few years older than herself. The three of them look for a house or apartment that will accept a dog and that they can all afford. Finally they find a two-bedroom house with a fenced in back yard. They furnish it partly with the couple’s furniture and partly with furniture donated to CIA. Lucy has been very nervous during this whole process and several times has screamed and cried and locked herself in her room. Her parents leave for Greece and Lucy is suddenly very excited to be living on her own with roommates just like anyone else her age. She is learning to do her own laundry and has learned to make a sandwich and noodle soup.
Lucy has been volunteering at a nearby nursing home and she likes it and they like her but she really wants a job working with children, She is taken around to various pre-schools where she is assisted to fill out applications. Everyone tells her the same thing: she needs a certificate in early childhood education.
Lucy and her community specialist have lunch together and talk about college. Going to college was something that was way beyond what Lucy hoped for herself. Her brother went to college and her sister is a cheerleader at USC and Lucy kind of likes the idea that she, too, can go to college. She agrees to look into it.
Lucy enrolls in the local community college. It is quite a long bus ride from her house to the college and Sally rides with her several times until she is sure Lucy can make the transfer and also that Lucy knows how to keep herself safe. A final test is done when Sally is not on the bus. A very handsome young man boards the bus and sits beside Lucy. He tries to strike up a conversation but she ignores him. But he persists and she warms up to him. He asks her if she would like to get off the bus and have a coke with him. She becomes very indignant and turns him down. In reality he is a staff member of CIA.
Lucy takes one class in early childhood education a semester. Sally meets her at school and is in the classroom with her in a very low-key way. The only other adaptation for Lucy’s intellectual disability is that she takes her tests in another room and uses Sally to read the questions to her. She studies very hard with Sally and with her roommates and she gets a C the first semester. She is very proud that she has passed her first college course.
The second class will require her to observe children in pre-school and for this she needs a TB test. Much to everyone’s shock the test comes back positive, although Lucy is not in danger or infecting anyone. Her doctor felt that she was infected when she worked at the nursing home, explaining that in that environment getting TB was not if but when. Lucy has to take pills for several months and this will wipe out the TB and prevent it from developing.
Lucy has been going to meetings with other people who have developmental disabilities who are learning to develop self-advocacy. These meetings are peer run with the support of a facilitator. Lucy has met a couple of people in these meetings that she likes and she has had lunch with them a few times, gone to movies, and gone shopping. She is now able to order meals and has learned to round up to pay her bill. She can get around using the local access service and also local buses, which Sally has helped her to learn. One the people she likes is a young man named Tom. Tom asks her out on a date and she is a nervous wreck. When she is under stress she tends to have outbursts of tears and screaming and her roommates go through quite an ordeal.
Lucy somehow gets through the date, a dinner at Sizzlers, and is in love. She and Tom spend every spare moment together. Lucy’s roommate calls Ben and says she thinks Lucy and Tom are going to be sexually active. Sally talks to Lucy about birth control and safe sex. Lucy knows all about safe sex because a speaker with Aids talked to her class at college. Lucy agrees that she should have birth control and she wants both she and Ken to have Aids testing. Sally finds a free testing service and Lucy and Tom get tested. Both are negative.
Lucy is taken to the doctor to get some sort of birth control. She and her doctor decide on the patch, as Lucy knows she can forget to take pills. The doctor says she would like to do a pelvic exam and Pap smear and explains to Lucy what it will be like. Lucy is very tense but thinks it’s the adult thing to do. Suddenly Sally, who is in the waiting room, hears Lucy screaming. And suddenly the screaming stops. A little while later Lucy comes out but she is very quiet, not her usual bubbling self. In the car on the way home she suddenly blurts out that her brother raped her. Sally stays calm and matter of fact and finds out that the rape or rapes seem to have occurred about five years ago. It is very difficult to be sure because Lucy has trouble with calendar time. She says she hates her brother and she thinks her mother and father knew it happened. Sally calls the assistant director of the agency and they decide a report needs to be made to adult protective services even though the brother is no threat to Lucy now. They also decide that Lucy might benefit from some psychotherapy.
Adult protective services takes the report but feels that nothing further need be done because the brother is so far away. A therapist is found who specializes in abuse and who takes MediCal.
Time passes. Lucy finishes all her college courses and now has a certificate in early childhood education. After much searching, she gets a job with a pre-school. She is now able to get around town with ease. She does all her grocery shopping on her own and she can cook simple meals. She does her laundry and can dust, sweep us, and vacuum. She still needs help cleaning the bathroom. Her roommates are about to move but she just got a HUD certificate entitling her to live very low rent. She and Tom, who has a job in a grocery store, want to get married.
There will be a new chapter in Lucy’s life. Another move and possibly living on her own without roommates, a possible marriage. Plans and goals evolve and change and the supports Lucy needs will change with her. But already, she has