 In 1993, the law about the type of living arrangements available to people with developmental disabilities like mental retardation, cerebral palsy, epilepsy, and autism was changed. The video is about a new type of living arrangement called Supported Living. This video was developed from a conference held in Stockton, California. The conference was sponsored by West Side Regional Center and the California Department of Developmental Services. Supported Living is building necessary services and supports around an adult with a developmental disability, regardless of the degree of disability, so they can live in a house, apartment, or condo, just like people without disabilities. Supported Living is very different from previous types of community living arrangements. In the past, the only option for people with developmental disabilities was being grouped with people of similar disabilities and living in a group home, developmental center, or health facility. If a person had the capability and motivation, they could learn the skills needed to live on their own with no or little paid support. This is called Independent Living. Supported Living goes beyond this continuum of care and assumes everyone can live in a home of their own choice, given the right kinds of support. The primary presenter in this video is Becky Dinafrio. Becky is a leader in providing Supported Living services for people who have developmental disabilities. She works for Choices, a Supported Living agency in Southern California. Other speakers featured in this video are Belinda Hall and Michael White. Part of the beauty of Supported Living is the struggle of it, because it is so individualized. My feeling is that once you become really grounded in the philosophy and values of Supported Living, you believe people should live in their own homes, regardless of their disability, if they choose to do that, and that it's your responsibility to figure out how to make that happen with them, then that becomes the lens through which you see everything else. Every decision that you make, every action you take is focused through that lens and then takes shape. Every situation, every community, every disability issue, every behavioral challenge, is a different situation with different responses necessary. In Supported Living, it's a big leap, both for those of you who are going to provide the services and for those people who are going to ask for the services, because there's no clear-cut definition of what it is. It's pretty clear what it is not, and we'll talk about that for a minute, but it's not real clear, and it's clear what it looks like, but for each person it's so different that there's no real easy way to define it. Who is Supported Living for? It's for anyone or everyone who says who wants to live in their own home. Either they or their family members say that they want to live in their own home. So it's living in your own home with supports that you have designed, you and the people who know you, and it's supported by lots of different places. Supported Living Agency, Generic Services, the Regional Center, the Department of Rehabilitation, MediCal, Home Health Agencies. We look for, we encourage people to diversify their base of funding, to look for lots of ways to support the services that they need to live in their own home. We have many people who rely on 24-hour assistants who are living in their own home. That has not been a barrier to them being able to do that, but sometimes that 24-hour assistance comes from lots of different places. We just have to do a good job of coordinating it together. When are people ready for Supported Living? Whenever they make the decision they want to do it. There are no prerequisites, skill levels that you have to attain in order to be able to do Supported Living. You don't have to have graduated from the Independent Living Program. You don't have to be able to cook three meals, balance your checkbook, wash your clothes, and there are no pre- Supported Living accepts you at the level that you are, does the things that you cannot do alone and may never do alone. Supported Living is meant to be able to support people who have more significant disabilities. Where do people live? People need to choose a community that fits them, which means they probably have to experience some communities. And people make decisions about communities based on a whole lot of things. It could be where they work, where their family lives, where their friends live, they want to be close to the movie theater, they want to be close to the grocery store. People choose communities based on a whole lot of different things, all of which we have to help people to think about. It could be a community that has a lot of curb cuts if it's a person who uses a wheelchair and needs to get around in that community. It could be a community that has accessible transportation. It could be a community that has good recreation programs. I mean, it could be any number of reasons. But if I know the person well, then I can help them to think about that. Choosing to live with or without a roommate, and I didn't define here whether the roommate does or doesn't have a disability, but that's part of the decision too. Whether you want to live with a roommate or without a roommate and whether you want that roommate to have a disability or not to have a disability, those are all choices. So most people choose to live with another person simply because of the economic reality of their life. It's not a disability issue, it's an economic issue. Choosing a home or apartment after seeing many possibilities. If you are interviewing a supportive living agency and ask them where people live, and they show you two apartment complexes where 10 people live, then people are probably not getting a large, wide range of choices. Choosing to live your own lifestyle, which is probably the most challenging part, well, it's one of the most challenging things about supportive living. People's lifestyles are not always the lifestyle that we would choose for them. They're also not the lifestyles that we sometimes expect they would choose. Even under the best of circumstances, lifestyle issues are a big one on both sides for the person, for people providing services and for people receiving services. How are some of the ways that people are getting to be successful at this? They really use a lot of person-centered planning, circles of support. People are very persistent and they don't give up because there certainly are lots of ways that this can be way-laid and not happen and where people can feel like they don't really have control. So people are very persistent. Services are designed by the individual. We have to remember to impeach ourselves as the authority. I think I've been pretty much saying that all day. We are definitely not the authority on services. The people who get services are the authority and they're very able to tell us what it is that would help us to be more successful in providing those services. People choose all of their own staff so we don't just have this pool of employees who we've guaranteed full-time employment to and we send them out on assignment. When we start to work with Tim, Tim and us advertise and interview and hire staff specifically for him. He may pick some people who are already working in the agency but he also may pick a whole new slew of people. The next part of this is descriptions of how people have chosen to live. Again, if you're providing services or you're interviewing agencies that are providing services and they tell you that everyone is chosen to live with two other people with disabilities in a three-bedroom apartment or house, that has not been our experience. That is not how people have chosen to live. So the basic premise of supported living is what we've said over and over. And although I say it over and over, I'm not always sure that... because people still will come up and say but there's this person that I know that does this and this and this and this and I don't think they could ever live in their own home. Remember that supported living services were designed specifically for people regardless of the severity of their disability. So that in itself is a different way of thinking about the way we do things. It's a different way of thinking, working, living. It's a different way of doing most everything that we do. And not only agencies that provide services have to adopt those values. Agencies that provide services. Regional centers are funders who buy those services. Family members who choose those services for their family member. People who rely on supported living services. Everybody has to accept the same values and structures. If you're not all working as a team, it's a very difficult service to carry off very well. Team work is very important. Partnerships are very important. One of the reasons that our agency that we feel like we have been relatively successful at our work is because we have very good partnership with the regional centers that we work with. They trust us and we trust them to be responsive to each other when we need each other. The supported living box is very open and pretty much it's up to the agency to package people's requests in a funding package that is attractive and palatable to the funding source. So person-centered planning. Write a plan that includes all the things that the person has said that they want in their life. Package it in a way that you can sell it to whoever your funder is. That becomes the job of the coordinating agency or the supported living agency. Very different from what we did before. We wrote program designs and said, you come to us, you get this program design. This is what you get. This is what we do. If you don't like this, you can go down the street to the other agency that does the same thing, maybe a little bit differently. But now we're saying we will do what you want us to do and not only will we do it, but we'll find a way to get it paid for. We'll find a way to sell it to the funding source. That demands that you have some kind of a good working relationship with your funder, be it the regional center, the department of rehab, in-home support services, whoever those people are. We have to remember that no one is free unless they have a choice and they're not really free unless what they choose matters to somebody else. You can have all the choices you want. You can live in your apartment. You can become a couch potato. You can watch TV. You can be really, really lonely. And that's not what people are looking for. That is not the kind of freedom that people are looking for. They're not looking to move out of wherever they're living, move into a place by themselves, and be lonely. They need to know that what they choose makes a difference to somebody. And many people in our five or six years have tried to show us and test us to see how much we will withstand in terms of them making unpopular decisions. Let's just see how far can I push this before you say you won't stay in this relationship with me anymore. How dangerous can I get? How challenging can I be to you? How hard can I push you away before you say that I really matter to you? How many times will you do that? So people have tested us, our commitment to the values and philosophy of supported living by making risky decisions. It's a really difficult part of supported living, but it's one that we definitely... There aren't very many people that don't at some point make some kind of a risky decision. The most important part of this is forming and sustaining relationships. It's okay to ask for help. It's okay to be ambiguous about some things. It's okay to work outside the usual service boundaries. It's obviously okay to get involved with people. It's okay to negotiate for what people want to need. We need to take time to reflect and we need to learn new things all the time. As I told you, I still... I learn new things every day from both the people that rely on us for service as well as the people who provide services. There are always staff people who amaze me with their insights into situations. We spend a lot of time telling stories and talking about that. New implementers of supported living services have to be responsible to become producers of change in their own community. You have to decide what this community can do, what your regional center can do, what your agency can do, what part you're all going to play in that, who are the people who are going to receive the services. So you start with person-centered planning and getting to know people, finding out what it is that they want. You design a support service plan from that process. You decide then the pattern of support. Like, when do they need staff? How's that going to look? Who is it going to be? Who is it going to be in terms of what kind of a person? Do they need a personal assistant at that time? Do they need a roommate? What's the roommate going to do? What hours does the roommate need to be there? All those kinds of things in terms of the pattern of support and services. You then are prepared to write job descriptions for those people. Each person has job descriptions for their support staff which are different from the next person. Every job description is specific to the person that they're supporting. And I will only reiterate that, again, remember that it happens one person at a time and you're aimed at a moving target. What the person wants today is not what they want tomorrow. It's not what they want next week. So please don't stop listening to people. Don't say, well, we got it down now. Now she's happy. She's hired a roommate. She's, you know, hired some support staff. She's very happy and everything's wonderful and we can stop listening now. You have to really stay with people because they do change their minds sometimes. People have their, they do their own lives. So lots of people don't eat dinner maybe. They don't eat breakfast or some people go out at night and they eat dinner late. It's whatever. They arrange their support schedule however they want it. So if they want a staff person from 6 to 10 so they can go out and do something and maybe eat together and do some recreational stuff, that might be what they do. It's their kitchen. They, it's their home. It's their kitchen. There's no cooking classes or cooking time or eating time. Everybody does whatever they want to do. The person that's going to share with you is my friend Belinda Hall and she has with her Tim who is her support staff for this trip. This, this is me. I'm taking a picture with a helmet on and I was at Camarillo State Hospital. These are my twins I had. Well they took them away from me. Yeah, they'll be 10 years old this year. And this is me at Camarillo standing by my locker and that's my bed with the helmet and How did you get to meet me? Bob Henley. Who's Bob Henley? The patient's right advocate. And who did he enter? You told them what? That you wanted to leave? Yeah And they told me I couldn't leave. They didn't want me to leave for a while. How long had you lived at the state hospital? At Camarillo for five years. From before that? I don't know. Years and years, different places. I don't remember. You lived a lot of different places. Since you were a child, right? This is my new apartment complex. When I was moving in with Carla when I got out that's my welcome home cake we had a big welcome home party when I got there and these are the people I met when I got there This is my birthday party my first birthday party you gave me I look good on there I like the way I look My hair was done I was happier When you first moved you lived with Carla Yes, that's the first one Can you tell people why that was different for you than when you moved to your other apartment? Why was it different? Okay I'll tell you guys why I didn't like that one I liked it Carla's house and I liked it Carla but it wasn't my house I wanted a house of my own or apartment of my own and she liked her things certain ways and I liked mine certain ways This is my place this is my kitchen my refrigerator all this belongs to me that's belong to me too That funky white bread Ain't nothing wrong with that bread honey it eats just like the rest of it this is all of my other stuff all of the series oh that's Bridget I think Bridget said don't be getting ready to cook dinner we was having fried chicken that night this is my bedroom that's my kitchen and the shower curtains was given to me and I kind of bought the other stuff little by little and that's my bathroom too and this is another one of my support staff named Adrian that's my living room and that's Eddie and Caroline Caroline gets support from choices also and they married each other that's a good couple Thanks Michael's friend Christy his aunt Maggie and Michael is going to do a multimedia presentation I moved back home home when I was when T5 but we could not get enough help so I have to go to a six bed group home that was not set up for my needs the only place left to go was a large facility in Southern California from there I moved into my first apartment that lasted eight months I ended up back in a nursing home finally I was able to move in with Christy it was a good thing now I am back in my own apartment this is the best home I have had next to living with my family my experiences with supported living are still growing I am my own region now center vice-coordinated tour with San Gabriel moon region now center last month I became vendor to handle the money to hire my support team it is scary step but it is the next logical step for me to be in charge of my own life I want more people to have the opportunity to have their own life to have relationships have make choices about the food they eat all simple things that everyone want in life we hope this video has helped you in understanding supported living if you would like more information on this subject please contact the regional center and your local area or call the california department of developmental services we would like to thank you for watching