 In 1993 the law about how to plan services for people with developmental disabilities like mental retardation, cerebral palsy, epilepsy and autism was changed. This video is about this new way of planning services. The video was developed from a conference held in Stockton, California. The conference was sponsored by Westside Regional Center and the California Department of Developmental Services. This new way of planning is called person-centered planning. A person-centered approach is very different from previous methods of planning. In the past, planning a person's services focused on their deficits, the things they could not do. Planning was for the person, with little regard for their capabilities, the things they enjoyed and could do. In the new person-centered planning approach, everyone works as a team. Planning focuses on working with the consumer to develop their service plan. Person-centered planning looks at the strengths, capabilities, preferences, lifestyle and cultural background of the person with developmental disabilities and respects the choices made by them and their family. The presenter in this video is Becky D'Onofrio. Becky is a leader in California in person-centered planning with people who have developmental disabilities. She works for Choices, a supported living agency in Southern California. If you're not doing person-centered planning now, you will do person-centered planning if you have a James in your life. If there's one person in your life who's touched you enough to make you want to do something different, to help them to make their life make more sense. And they are much more like us than they are not like us. So we can't stand back and say, well, it's okay for them. There is no them anymore. It's really us. And when I help James's life to make more sense for him, it makes my life make more sense. Why else did we all start working in this field? Why else did we start doing what we do, except that we wanted the quality of life of people with disabilities to be better? And in so doing, I think the quality of our life becomes better. We opened this group home and James and his youth moved in with us. And that's when it started to happen for us that there were IPP meetings, I-T-P-P-I-S-P-I-E-P-I blank P meetings that we were walking out of feeling unfulfilled. We weren't feeling good about the meetings. We felt like we should have been listening to the people who had been the focus of those meetings for years and had told us years ago that those meetings weren't very much fun. And we hadn't quite, we're kind of slow learners. And so we hadn't quite figured it out why that was so. But James and his youths kept kind of telling us and the other people that we were working with in this day activity program kept telling us that things just weren't right. I think that if there's anything that's common amongst all of us in this room, it's that our lives have been touched at some point by people with disabilities. My life was significantly touched by these two gentlemen and some other people who moved in with us. We had four people living with us in the course of the last 10 years. And it's because of what they've done to my life that person-centered services is important to me and person-centered planning is important to me and supported living is important to me. It's not because I had this revelation that it was the best thing to do. It's because people were telling me my life needs to be different. And could you help me to do that? Stop telling me what it is that you think I should be doing. I mean we were great group home providers. They lived in the best group home. I'm a little biased. But even in the best situation, it wasn't their home. They didn't own it. They didn't have ownership. As we started to sit with them and plan and sit in IPP meetings and stuff, we walked out saying what's wrong with this picture? What could I or should I be doing to help make this person's life make more sense? If you are not willing to be the focus of a person-centered planning process, then don't do it to anybody else. If you wouldn't be willing to sit in a meeting and do a person-centered planning process with people who know and care about you, then don't expect anybody else to do it. You won't be able to do it. You won't be able to do it very well. We all had to do our own plan as part of the training. And then we had to share it with 15 people who we didn't know. So basically what I wanted to do is share with you the category. There's non-negotiables. These are the things that I defined and other people who know and care about me defined as things that I must have in my life. Now that doesn't mean that everything that shows up in someone's non-negotiables are things that they have in their lives. It's just things that you really want to have in your life. Or it could be things that you absolutely can't have in your life. So it could be just as strong to have a non-negotiable that I have no place for people who discriminate against or devalue people with disabilities. It's just as important to me to have the absence of that in my life as it is to have people in my life who value people with disabilities and don't discriminate against them. My basic agenda is why do person-centered planning? Why is it important? Why do I believe in it personally? What are the philosophies and values of person-centered planning and then some techniques for person-centered planning? We'll talk about maps and paths and essential lifestyle planning, personal futures planning, all the things that you can put in your toolbox to use as you start to do person-centered planning. This is James. James lived with his mom until he was 20 years old when she died. He had no other family to assist him at that time and he moved into a group home. And lots of things happened in James' life at that time. This is Carla. When I met Carla and when she realized that she was seriously in need of person-centered services, she lived in a facility where she had been assaulted, she wanted to move, she wanted to go to school, get a communicator and have a motorized wheelchair. This is the communication system that Carla was using up to that point. This is Irma. She lived at home until she was 50 and her mom was her constant companion. She went to school with her, was her provider of service, was everything to her. But no preparation had been made for what would happen when mom was no longer with us. And so when mom passed away, Irma moved into a place that she affectionately called the Fishbowl. It was a 45-bed facility. This is the woman who had had an AA degree. But that's very difficult communication and at that time had none of the equipment that you see her sitting in now. She didn't have a motorized chair. She pushed her chair backwards with her feet. She didn't have any communication system. And when I met her, she lived there for five years and no one in the facility knew how to understand her except to close her eyes for yes and open her eyes for no. So she couldn't start a conversation. She actually at one point had her speech pathologist put a sign on her chair that said, I understand everything that you're saying so please don't talk about me when you stand next to me. Her and a friend of hers decided they wanted to bungee jump. And so this is Irma on that side and Dennis on this side. And some friends of theirs, actually that's my husband with the sunglasses on. They had just had a full day of skiing at the handicapped ski school. I don't know why it's a handicapped ski school. I'd never noticed anything handicapped about it. But so they had just skied and now in the same place where they have skiing, they have bungee jumping. So Dennis and Irma decided that they wanted to they hadn't had enough thrill in their life that day. So they wanted to bungee jump. This is Dennis. Now the bungee guy was a little nervous. The bungee guy was more nervous than Dennis. They give me a beer and throw me what could go wrong. I have quadriplegic cerebral palsy anyway. What can I break? Maybe it'll stretch me out. But this guy had never thrown anybody off the platform. So you jump when you're ready. And he had to throw Dennis off the platform. And he's going to Joe like, when will I, how will I know when he's ready? He'll tell you he's ready. He'll say go. This is Geraldine. Geraldine also lived in the facility when I met her. And she had met someone in the facility that she wanted to marry. And she was told that if she married him while she lived in the facility, they'd have to stay in separate rooms because men and women couldn't stay in the same room in their facility. They also decided after they got married that they wanted to have children, despite the fact that both of them have physical disabilities. And as you can see, they were successful at that. This is a baby shower. Around 1985 I met these guys, James and Jesus, the two people in the middle. James with the Ralph's uniform on and Jesus who's standing next to him. James and Jesus, and James who I talked about a little bit earlier, moved in with my husband and myself in our group home. They forced us to look at it differently. It's not always easy to do that, especially when you're convinced that what you're doing is really good. Person-centered planning is a difficult thing to do when you believe that the services that you're providing to people are very good services. I provide really good services. But the idea of talking and listening to people on a different level is very scary when you believe that because people might say, you're right, you do very good things, but I want something different. And so it's in the last 10 years that I learned from these guys that I had to listen better and I had to listen better and I had to listen better and I had to refocus and think about what they wanted, not so much what I wanted or what the system was telling them they should have. So I guess we could have stopped listening to him then because he was in an appropriate placement. But five years later he was saying to us, not with words because that's not how James tells us things, but he was telling us in lots of ways because we knew and loved him that there was something else he wanted in his life. And so if we'd stopped listening to him five years before when he'd been placed in this great group home and when it was an appropriate, when everybody decided it was an appropriate, the IDT team had decided it was an appropriate placement and his family liked it and we all enjoyed him and we were having a great time. If we'd stopped listening then, James would still be living in a group home and he wouldn't be living in his own home and he wouldn't have a job and he wouldn't be using the bus and he wouldn't be doing a whole lot of things that he's doing now. If you're not doing person-centered planning now, you will do person-centered planning if you have a James in your life. If there's one person in your life who's touched you enough to make you want to do something different, to help them to make their life make more sense. If we look, if we stand back and look at the lives of many of the people that rely on us for support, their lives don't make a lot of sense for them or for us and they are much more like us than they are not like us. So we can't stand back and say, well, it's okay for them. There is no them anymore. It's really us. And when I help James's life to make more sense for him, it makes my life make more sense. Why else did we all start working in this field? Why else did we start doing what we do except that we wanted the quality of life of people with disabilities to be better and in so doing I think the quality of our life becomes better? I have not had an experience in all the years that I've been doing this of people coming in telling me they wanted to own the Dodgers or be in the Playboy Mansion or drive a Corvette. And I think that sometimes what we have to do is remember that I have dreams of driving a Mercedes and owning the Dodgers and a few other things that I wouldn't talk about in a large group. But those are the things that keep me motivated. They're not things that I think I'm ever going to have in my life but they're things that keep me motivated. Why do we deprive people that rely on us for services that motivator? Why can't they have that? As long as they feel like we're walking with them toward something, those little steps will be just as satisfying. That motivator needs to be there. Don't take it away from people. A woman told me about her daughter was in an inclusive kindergarten and the teacher told them to draw pictures of what they dreamed about for their children's future. She drew a picture. Her daughter happened to have a label of severe disabilities. She came back into the class, showed the teacher the picture and she said, oh, that's unrealistic. That's an unrealistic dream. You'll have to go back and draw it again. You laugh. But that was in the last five years. This is not like ancient history. And I'm sure that that still happens today in very small ways and very large ways. So we have to be really careful what messages we're giving to people when we talk with them. It is very clear that person-centered planning and circles of support change the mission of human services. It is a drastic change. For those of us who believe it's just a tiny little step, it's just one more thing on the continuum. It is not. It is a drastic change. It's a change from what we used to do and what we got really good at, which is treating people, protecting people, and controlling people. We got pretty good at that over the years that we've been providing services to people with disabilities. We need to focus now on assisting people to make, to find, and keep their place in community. We need to increase our commitment to better lives for the people that we assist. We need to learn to become better collaborators with the people we assist. We don't have to be the all-knowing omnipotent professionals. People are going to do risky things. People are going to make decisions that I wouldn't make for them. And it seems like for many of the people they've had little experience making choices, and so when given choices, they say pretty much the things they're already doing. That's why it's important to remember that person-centered planning is not about a meeting. It's not about an interview. It's not about us sitting down and asking people the 23 questions that are on the Personal Futures Planning interview. Person-centered services are centered around spending time with people or spending time with people who know and love them because there is somebody who knows. And in most cases, it's the person who's spent the most time with them. And in our case, it's been mostly parents who, you know, years ago when a parent would tell me, he likes to shoot his toes in his socks this particular way and then his shoes this particular way, I said, oh my God, they're so compulsive, you know. Now I realize that that's an important part of that person's life and if his shoes are not in his socks that way and his socks are not in his shoes that way, he's very uncomfortable. So if we ignore those little details, now that to me is a choice and a preference. When we talk about choices and preferences, what happens sometimes is people think, oh, people are too cognitively disabled, they haven't had enough experience making choices, they don't know what else is around. That's why this is an evolving process. This is not about spending one meeting with people saying, so what is it that you'd like to do now? People have to have a life that makes sense today in order for them to dream about tomorrow. If they have a life right now that isn't making much sense for them because people are not being respectful and flexible and responsive to them, then they can't think about the future very well. So what we have to do is be sure that people are being responsive to them now in their immediate need for selection of activities, things that they eat. When I met with Irma, one of the big things that Irma said to me was, I want to have fresh vegetables. I want to have shrimp once in a while. I want to stop wearing diapers. I want somebody to put me on the toilet when I ask to be put on the toilet. It was moving to me that those were the things that were important. That's all she wanted. And she hadn't been able to have that for five years. See, that's what starts to make... See, unfortunately, and you'll see, I'm going to share my essential lifestyle plan with you later this morning, you'll see that in my plan it says that I'm not very patient anymore. I'm tired of waiting for things to happen in people's lives. Irma waited five years. As soon as she moved into her own apartment, she was home. There was no adjusting, there was no getting used to it. That's where she lived. She lived at home until she was 50. So for five years, we ignored her need for having preferences and making choices. The overhead is about what's a person-centered plan. I think it's important to remember that, of course, we all know it's based on the person's preferences and needs. It's bigger than any service agency can provide. It is not an IPP. The things that come out of a person-centered planning process are not all going to be purchasable services. It's a whole life plan. Some of it are things that the regional center may purchase for people. Some of it are just things that are going to happen in people's lives. Doing a person-centered plan is not doing an IPP. It's as big as life, and it looks at where someone's going and what parts he or she will need to get there. It focuses on building community connections, which I think is something that we haven't done very well, and we're still working on doing better. And it includes families, friends, and others as well as service agencies. Discovering the person, which is kind of a set of questions, but these are just some kind of teaser questions to give you an idea of what kinds of things you'd be interested in finding out from people. What are their life experiences in life? What are their dreams for the future? What are the people who are important in that person's life? Who do they define as important in their life? Those are the people that you want to talk to. Where does the person spend time? What experience does the person have making choices? What works and doesn't work for this person? Looking honestly at what works and doesn't work right now for this person in their life. What works and doesn't work? What are the person's interests, gifts, and abilities? The whole process is built on recognizing people's competencies, gifts, abilities, and the traditional assessment data, which was finding out what people's deficits were and how we might be able to fix them. It's about talking about where people are good, what they're good at, and how can we capitalize on that? How can we help them to be in places where they're going to be able to be around other people who are good at the same things, who will appreciate they're being good at something? Where are they going to have the opportunity to meet? How do you meet friends? You meet friends in places where people do similar things and have similar interests. If there's anything that we need to believe in order to do the process or to think in a person-centered style, we have to believe that all things are possible. We have to learn how to ask questions in a different way that doesn't limit what people give us as responses. You will learn how to do it by starting to talk with people one-to-one in groups by yourself in places they enjoy being so that you ask questions in a way that they say. You also really have to believe that all things are possible with the right type of support, that regardless of the severity of someone's disability, regardless of the challenge that they present in terms of their behavior or other things in their life, that anything is possible for them if they had the right kind of support. Support can come from all parts of the community, not just from somebody that the regional center is purchasing services from. Presenting a fixed menu of services, this is what we provide to some, will get you a fixed response. Presenting people a blank piece of paper and saying, you write on here what it is that you want. You tell us what you want. We'll get to know you and fill out the paper with you. Works much more effectively. Successful person-centered plans are plans that focus on strengths and opportunity. People have strengths and we need to find opportunity for them to exercise their strengths. The description of the future needs to be clear. We need to know what we're going for. We need people to commit to... It says to meet on a regular basis. That's again when you're really involved in meetings. But people need to commit to being part of the support network for a person. They really need to commit to what is it that they're going to do to assist and that they keep those commitments. Someone agrees to facilitate the process for the person. People participating are connected to their community and family members and advocates are in the group if the person chooses them to be there. So what we are doing with people is discovering what it is that they want. Planning with them and advancing the dream. And it's a very continuous process. It's a very continuous process. We have to remember that we are now in a position to help people to rediscover what their dreams are. Because as I said earlier and I will say repeatedly we have squished that out of most people. They don't know how to do that anymore because we've told them they were unrealistic. We've told them that wasn't available in their community. We've told them that there is no service category for that. We've told them that they wouldn't be safe there. We've told them lots of reasons why that wouldn't work for them. And so we have to help people to rediscover their dreams. That becomes our responsibility. What I'd like to do now is get into some of the specific techniques for doing person-centered planning. The first one that I want to talk about is essential lifestyle planning. I've mentioned it a couple of times. And what I'm going to share with you just briefly is this is my essential lifestyle plan. Strong preferences. Things that you need to have. The one that is most important to me is that shopping time, that sneaking away shopping time. I believe in retail therapy. And I have to be able to sneak away when no one knows I'm shopping. That's the most exciting therapy that I can get. So that's strong preferences. And then the next one is highly desirable. Things that I enjoy or would like or want. The process for getting this information is to talk to the person, to me, and then to talk to people who know me with or without me there. It's up to me. I decide with the person who's facilitating my essential lifestyle plan. And to gather all that information and put it together in one document, which then goes back to me and I review it to make sure that there are things, only the things that I want to be in there are in there. I don't care if somebody's set them. If I don't want them in there, I take them out. The other thing that we do during this process is spend a lot of time talking about people's positive reputations. The things that people admire and like about them. I start almost every planning meeting that I do with positive reputations. What do you admire about John? The most important piece of this thing is to be, is this part, to be successful in supporting her. It doesn't say, in order for Becky to be successful in life, this is the part of the document that has to do with what we need to know as her friends and family and people who love her to be successful in supporting her. That's what our plans should look like. What do we need to know to support this person to get what it is that they said was important in their life? There's also maps and paths. This is the maps process. It's a series of about seven steps that can be done in a two-hour meeting very simply. The meeting is not a replacement for spending time with people. The meeting is simply a way to, you know, you put up the paper and you have the colored markers and it's a recording process for information that's probably been gained over the period of time of getting to know someone. This is what we did to record someone's map. We did it on the boards. And this is the young man who has autism. I've known him for about 11 or 12 years and Facilitated Communication has made an amazing difference in his life. But he still has lots of challenges in terms of behavior, lots of challenges. He couldn't sit in a meeting. This particular meeting was held because his mother called me and she's dying of cancer. So the meeting was held at her request to plan what was going to happen with Scott when she is no longer with us. And there were many people who came who had worked with Scott years ago and become friends with Scott years ago who came to the meeting. And it was a wonderful... Scott identifies highly with pictures and so we put all of his stuff this whole thing in pictures. This is the one that I told you. Person-centered planning, how do we know it when we see it? Planning is done as needed, not as mandated. It's not like somebody says to me, I really like to make this change in my life and I say, well, your annual is coming up in five months. So it could just hang on until then. Planning is done as people need it to happen. Meetings are convened when they need to happen. Focus is driven by the individual strengths, capacities, desires, and preferences. Every interaction is person-centered. Reflects dignity, respect, and caring for the individual. Our dreams reflected in the IPP are the plan. Would you like to step into this person's life? The whole process respects individuals as just that, an individual, not a person with a developmental disability, not a consumer of the regional center, not a person that lives in my group home, not... So when you respect a person as an individual, then you don't have to take a whole lot of training classes in respecting cultural diversity because people have that as part of their individuality and we need to be watching for signs of cultural diversity and how to respect that in our services to people. We need to be looking for differences in family backgrounds and the way people have lived before we met them. We need to look at religious preferences, political preferences. We all have things to learn and we learn them every day in every experience that we have with people that rely on us for services. We hope this video has helped you in understanding person-centered planning. If you would like more information on this subject, please contact the regional center in your local area or call the California Department of Developmental Services. We would like to thank you for watching.