This is a story is about Charlie and his family, friends of mine that I have known for a decade and more. Dan, Charlie's dad, was for many years the director of our local area board on developmental disabilities, and more recently I have known him as a fellow sailor and friend. As a professional advocate, and also as Charlie's dad, Dan has often times been frustrated with the variety and quality of choices that are available in the system.
The oldest of three boys, Charlie was always a part of his family, whether it was getting into mischief with his brothers, going to the fair when it came to town, running around out in the Christmas tree farm his family tended, going sailing on the Delta with friends and friends of friends on his parents' beautiful sailboat. Sledding in the snow or playing with the hose in their big front yard, Charlie was always busy being Charlie: curious, active, and social!
Charlie had his problems too. Because of some medical problems early on in life, Charlie did not gain the ability to speak as other kids his age did. His seizures and the medicine that he had to take to control them pushed his moods around and could make him pretty sleepy at times when most people were awake, and vice versa. He had few friends to hang out with after school, living in the country as he did, and, like most kids with severe challenges, he experienced more than his share of rejection. As we talked together during those years about Charlie's future, Dan or Nancy would shudder at the future prospects for Charlie. Nobody that they knew would want to provide a home for him. Time passed quickly, and it seemed like no time at all until Charlie was turning 18. His parents knew it would be important for him to establish his own life, independent of theirs, as he grew into adulthood. They knew that the change would be hard for everybody, but that it was important for him to find his way while they, the people who care most for him, were still around to help him do so.
For Dan, it was a professional bias too. Typical patterns of young adult life include the notion of leaving home. Sometimes it is for college; sometimes for military service; sometimes for a job. But for whatever reason, when children become adults, home changes address.
When Charlie and his parents started looking for a place for him to live, the choices were still pretty much the same as when he was born. "The first place Charlie moved to was a small family home serving people similar to Charlie. The people cared about Charlie [and the placement] lasted a number of years. [But he was, in the end, still] in somebody else's home. These were good people [but] they eventually burned out [and] asked us to take him."
By now, Charlie had a rather severe reputation and if you had uncontrolled seizures and needed help with your daily routines, you usually lived in a place that was licensed to provide for your health and safety. So, Charlie moved into a health facility with eleven others, there being no other alternatives available at that time. Said Dan, "The people who were running the place were trying to do a good job, but they were hiring people at minimum wage who had no particular commitment to people like Charlie." What happened next in Charlie's life has amazed everyone.
Actually several things happened, and they happened pretty quickly: A couple of people agreed that they would be willing to become roommates with Charlie. The California Health and Safety Code was modified to reflect changes to the Lanterman Act which allowed people who were deemed to require "24 hour care and supervision" to be served in settings other than those licensed by either the Department of Health Services or Community Care Licensing. And Sacramento Vocational Services, an organization that had for many years helped people with disabilities find and keep jobs became a Community Supported Living Arrangement (CSLA) Agency .
"When CSLA opened up," his father told me, "I selected SVS (Sacramento Vocational Services) to be the supported living agency. They literally shaped together an arrangement in a matter of weeks and [boom]! It just stunned me because I figured there would be months of meetings and preparations and all kinds of over_cautious processing. I mean the fact that they were willing to take some financial risks to move him shows a level of concern for him that I really appreciate because you know, organizations often do things based on what's best for them, not what's best for the client."
Curious about how and why SVS moved so quickly, I paid a visit to their director, Donna Bettencourt, and Andre Shaw, a community support facilitator working with Charlie, and asked them. Said Shaw, "It was a combination of things. Dan was really anxious to have him move. We wanted an area that was safe without a whole lot of traffic [so] I was looking in the area that I grew up in, and found that the house that I grew up in was up for rent so I jumped on it! It's an old parsonage owned by the church so I talked to them. It's a real 'warm fuzzy' for them, having a person with a disability living there plus we're always monitoring the place so they know it will be kept up." He added that his personal connections to the neighborhood has helped him understand what life is like for Charlie in the neighborhood. "So it just seemed to click nobody was prepared for it to happen as quickly as it did, but it's worked out just fine."
When I asked Donna why SVS became a Community Supported Living Arrangement Agency in the first place she told me it was because the agency had a history of following the leads given them by the people they serve. "First they told us that they wanted jobs. Then they started telling us that they wanted to live in a place of their own and we just followed that lead. I think we felt [as an agency] a sense of frustration, seeing people who had some real severe challenges out there doing stuff, making choices, getting a sense of themselves, and [living in] residential options that were [not as consumer_oriented as we might wish]. "
"Just the ability to put pieces together in ways that they haven't been put together before, unfettered by vendor categories, created a service that we couldn't provide before. In the old vendor system, if you have a service you have a number for it.. No number, no service, and no creativity either! You took what was available or you didn't. That was it. With CSLA there are no service numbers, you provide what is needed and you bill for it and that's it. Without that flexibility, we couldn't have done a lot of what we did because there's no vendor categories to do it under."
I asked about their fears as an agency as they moved into what was, for them, uncharted territory. "We were afraid that a live_in was doing certain [unacceptable] things, and that happened. We were afraid that somebody would have a life_endangering situation, and that happened. We were afraid that it would be difficult to get [and keep] good live_in support staff, and that continues to happen. But the thing is, we've survived all of that and learned a lot from it all."
"We've learned to trust our instincts about people and not hire people who we felt uncomfortable with, regardless of the pressures to do so. And to have as many people as possible informed about just who our consumers are and have as many people as possible watching out for them. The more people watching, the better to make that formalized. Setting up ways for that to happen."
About liability issues, "Anybody can sue you for anything. We try as best we can to protect ourselves by hiring good staff, but in the end we are vulnerable. But you cannot live out of fear or it leads right back to [having just a few living options]. We could call them fear_based residential models!
"[One] of my biggest fears is that people don't have friends. Right now frankly, everybody I've met are paid except for a few ministers and a few family friends, but other than that [the people we are serving] don't have true friends and that [we don't know how] to make that happen. [I also worry that] they don't become contributing parts of their neighborhood, just because that's just the way society is now. The possibility that someone will spend time with Charlie that isn't paid to hasn't happened yet."
So, I wondered, just who is spending time with Charlie" And why are they so different from the people who have spent time with him before" So I called Charlie's telephone number, explained who I am and what I was up to, and asked when it might be convenient for me to come over and visit. The guy I talked to was named Mike, one of Charlie's roommates, and we agreed to meet at the house in a couple of days.
Andre had told me about Mike. A graduate student in English, he had responded to an ad and had been interviewed just prior to Andre and Charlie finding the house. "I wanted to go to graduate school," he told me, "and didn't have the financial resources at the time and so my choices were either getting a job and taking it really slowly or taking out a loan. I really didn't want to take out a loan, so when this came by my way it seemed like something that I would not only enjoy doing, but something that would be compatible with being a student and in many ways it works out very well that way." When I asked him how he would characterize his relationship with Charlie after seven months of living with him he said, "I would call myself his friend. [I'm] trying to avoid becoming paternal, it would be an easy thing to get into, but I think in a situation like this it's not a good way to go because we are stressing independence and freedom of choice. So, yea, I'd call myself his friend."
As the story goes, when Charlie and Mike first moved in together there wasn't much in the house like furniture and all the things that one needs to run a household, but, much like when many of us first moved out on our own, the scramble to find those essentials turned out to be the focus events around which we got to know our roommates. And things were not all laid out about who would be doing what, when. Agreements had to be reached amongst Charlie, Blackie (their third roommate), and Mike as well as amongst other paid people who would aid in providing support for Charlie. And while Mike admits that at first he did experience some apprehension about moving into his new living situation, the "experimental atmosphere" of the whole deal felt supportive to him. "Because we didn't know exactly what was going to happen we sorta had to improvise as time went by," Mike said. "My role is basically making sure that the domestic side of the house is together. That people are paying their bills, doing some of the housecleaning, stuff like that. I also help Charlie with his hygiene [because] he has a hard time keeping himself clean and since Charlie likes to get up in the middle of the night, I kinda have to get up and lead him back to his bed whenever he gets up." Fortunately, since Mike does not consider himself a "particularly regular sleeper" anyhow and has gotten into the habit of taking a nap in the afternoon, getting a good night's sleep one out of four nights has not chased him off. Still, it is one of the most difficult parts of living with Charlie. Mike remains optimistic though, and tells me that he suspects Charlie's starting to get the idea that when everybody else is in bed, it's the right place for him too; that it is different here from where he lived before where people were up all night, every night. And even more significantly, now when Scott or Dan show up for a visit, Charlie takes them by the hand and pulls them towards the house, in his own way welcoming them to his home.
Since they moved in, Mike, Charlie and Blackie have met most of their neighbors. Mike reports that in general they have been received politely and have not experienced any negatives from the neighborhood. People seem to accept that they are there and will be there for some time to come. For Mike, that is likely to be for a year or two yet, at least until he completes his graduate work. For Charlie, well, Mike sees it this way: "He seems happy living here, and I know for the people around him, finding a job is a high priority. Hopefully things will develop well for him there. And if they do, then he's got a home and he's got a job and so, you know, he's got basically the two things most people have and beyond that, it's just a matter of developing the social support that everyone likes to have."
As far as Charlie's future goes, the shudder is gone from his parents' voice. When I asked Dan about Charlie's future he said, "I think Charlie stays in supported living for the rest of his life. It gives him all the flexibility in the world. People will change, roommates will change, but I can't imagine a better situation for him. And I have hope, even with the cuts in SSI [and so many other problems] this is conceptionally so sound that it will ride through those problems without being torn apart. Really, this is the first time that I've had this feeling of contentment and peace about Charlie's future. It's wonderful! I tell everybody I meet that this is the best thing I've ever seen the regional center system do in the State of California. It doesn't mean that it's perfect. It doesn't mean that there aren't risks. If personnel changes over and they get someone who's not got the values or don't care or are just incompetent, then it becomes more of a struggle. But even then, as long as I'm someplace close to him, I can fill in, I can compensate. Here I feel like an equal partner, so if they get weak in a particular area, I can step in and patch that part up. And it's real flexible too. If I move somewhere else, he can move too and live someplace close by, so it has all the flexibility in the world to work."
Imagine That! is a quarterly newsletter about supported living published by Allen, Shea & Associates, 1040 Main Street, Suite 200 B, Napa, CA 94559, (707) 258-1326 under contract with the California Department of Development Services HD390061.