(16 Minutes) Produced by The Minnesota Department of Human Services: Community Supports for Minnesotans with Disabilities, Minnesota's Self-Determination Project ©1999
VO: Self-determination. It means the freedom to make choices and having the opportunity to try new things.
John Beckman: Jason's been with our family for quite a long time and we did a lot of things internally as a family and we knew that eventually he'd have to get out on his own. So we were looking for somebody to help us give him more experiences with additional people. When we used an agency, there were a lot of forms and you had to try to get things in writing and try to be very specific so that it could be passed on to someone else. And as a result, I think our goals were relatively limited and fairly narrow. And then a lot of times because of the change in personnel, there was a loss of communication as to exactly what the goals were.
Jason Beckman: I like to decide things I like to do. Like I like to decide where I want to go and what I want to eat.
John Beckman: With this new planning process, it's considerably more flexible where we kind of go to the person and say, "Hey, what are you interested in and how can we use those interests to support Jason?" And then it kind of becomes natural rather than always having to go back to the form and saying, "Have we made more than 50% progress in this particular step?" Under Self-Determination we have considerably more flexibility.
Jason Beckman: I exercise at the "Y" two times a week. At the "Y" I have a personal trainer named Mara. She teaches me how to lift weights, how to do other things, do the cross trainer, how to get my muscles strong. I have more control in my life and it feels good. I like doing different things.
John Beckman: Under the Self-Determination program the control of the money has made quite a difference. When we used an agency there was a lot of responsibility that the agency had to take on. And so there was a fair amount of the funds that went into an overhead and there were a lot of limitations on what they could do. Under Self-Determination, we take a lot of that responsibility ourselves and as a result, we're able to take and allocate a greater portion of the money directly to the people who are providing the support service to him. And by being able to pay those people a little bit more, we're able to get a higher quality person to do that work.
John Beckman: Jason had always been an individual who was afraid of new environments, afraid of large groups, afraid of strange buildings. And so Tim took this as a goal and within a few months, Tim actually had Jason into a fairly large restaurant, singing karaoke up in front of the group in the spotlight on the stage.
Emcee: Jason Beckman's gonna step on up and sing a song. (Applause)
Jason Beckman: I sang "Achy Breaky Heart." (Jason singing lyrics to "My Achy Breaky Heart"). Lot's of people watched me sing.
John Beckman: I think if we'd wanted Jason to be a singer and picked somebody who wasn't interested in singing, you wouldn't get the same kind of response out of Jason.
Jason Beckman: The people clap for me when I sing and that makes me feel good. (Applause)
John Beckman: Initially I was a little bit concerned. It seemed like the agency was giving us too much freedom and that there weren't any checks and balances in it. But now that we're involved in it, we can see that the social worker is watching very closely what is happening and how the money is being spent. They're getting good feedback from us as to what we're doing and how we're using it. I think they're quite comfortable with what we're doing with Jason and how we are spending the money.
Jason Beckman: Sometimes I need help in making decisions because sometimes I don't always make the right decisions.
John Beckman: We've not had any problems ourselves giving Jason more freedom. He's 23 now. He's going to have to be out on his own someday anyway. That's one of our goals and it's part of letting go as you would with any normal child coming up. Someday you've got to let go and we think that this experience is helping him make that transition much, much better.
Jason Beckman: I'm hoping that someday to live an apartment of my own.
VO: Self-determination. It means asking people what they want and not deciding what the questions are.
Mary Jo McBride: I think that's the ultimate piece is that a person that is part of self-determination or is really self-determined has a life that they define for themselves not that somebody else defines for them.
Lynn MacDonald: Eileen lives in her own house in the Como Park area. As far as her Person-Centered Planning goes, one thing that's real exciting for her is she's starting to initiate going up to the paper and start writing people she wants to invite to her own party. She needs a little help with spelling but other than that it's just wonderful that she's up there. Part of her support network includes her mom which is very active in her life. Eileen loves her mom so much she speaks up more. One time her mom had made a comment, "Is she going to run the whole meeting?" It's like, "Well yeah, this is her meeting." It's really great. Before, you could see Eileen just sitting there and everybody else doing the talking. Now it's a lot different. Now she can actually start going up there. We kind of help facilitate it, but these are the things that she really enjoys. And it gives her motivation, excitement, passion to do things. And she wants to do them then. And then she can bug staff, "Hey, you haven't done this for me yet. Let's go do this."
Lynn MacDonald: One thing I've really noticed about the Person-Centered Planning is before, the way things were, they were like goals, that type of stuff. It was more deficit based. That's how things were done for a person and taught. Now, we're looking at outcomes, what their dreams are, what their visions are, and the skills are being developed from that. With Self-determination, they're making decisions on what they want to do and their skills are being developed through their dreams and their visions and what they want to do for themselves. We're starting to ask them the questions not us deciding what the questions are for them.
VO: Self-determination. It means being able to control the funds, choosing what services you want and need, and having what you need to be successful.
Mary Jo McBride: Money is power across the system. When you have money you have choice and control.
Peggy Olson: I have a little boy. He has autism. He's five years old. He'll be six in another two months. He was diagnosed at two years. He didn't wave bye-bye. That was probably the first thing I noticed that was unusual about him. It started to become almost a mission to try to provide what he needed because there wasn't anybody else to provide for him. The obstacles for the most part are financial. I couldn't find the people with the qualifications. You can't ask somebody with a Masters Degree in speech pathology to work for seven dollars an hour. We had gone into debt and we knew we were at a point when we would've had to stop because we couldn't go any further into debt. We have a small farm. We both work full-time. The timing was critical.
Peggy Olson: That day they mailed me out the application and I filled it out when I had it and sent it back. What it said was we don't need to utilize the PCA agencies. We don't need to pay an agency to provide the support unless you want to. You decide which agency you want to work with. It was kind of like ordering a pizza. When you order a pizza, you decide what you want on it. With Self-determination, when we go into an agency, we decide what parts of the agency we need and we only pay for the parts that we need.
Peggy Olson: My living room is our therapy room. Our staff are trained in my home by our psychologist so we don't need the training that the agency pays for. When I have this funding stream that I'm in charge of, I'm not shopping for my toys at Toys R Us, I'm hitting garage sales because I see where the money goes. We've been able to provide all of what Daniel needs to be successful. I'm able to plan his program. I take last year's budget compared to this year's budget, work with the case managers because I have questions. They're always helpful. Being able to control the funds means that I control my employees. I can pay them what they are worth. I'm able to be more flexible. In one situation, I budgeted in some health insurance for a person that was so valuable to me I couldn't afford to lose her but she would've needed to get a full-time job because she was a single person. We kept her for three years.
Peggy Olson: My case manager meets me now briefly to go over the forms. "Where are we now?" Comes in and sees Daniel and is just in shock. Has a kid just about his age and is in shock. Says, "My kid didn't do that in Kindergarten." I used to be on the phone to her once a week. Regarding the schools, my role has changed from being the mom that signs the IAP to being the leader of the IAP. They no longer hold the big piece. We hold the big piece. The bottom line is the big piece is Daniel and Daniel's future. Daniel is funny. He's bright. He's cuddly now. He loves to be held and his eye contact is good and he looks into your soul. He likes to sit and read books and he comprehends what we're reading. He sits with his brother and they read and their relationship has changed to that of a brother and a little brother. And I never thought that would be possible.
Peggy Olson: Now we have a little boy who rides his bike without training wheels, does his best to do everything his brother is doing, is going into Kindergarten this fall in a typical setting, in a public school with other Kindergarteners. He graduated from pre-school and at his pre-school program, which I videotaped, you couldn't tell which one he was. Instead of perhaps going into an institution or group home, and that was what we were originally planning for, it looks like he might be going to college and buying his own home and maybe getting married. Who knows what he's capable of doing.
Peggy Olson: If we put the money in him now, and we invest in him now when he's little, it changes his whole future. It changes the whole course of things. I don't see him in an institution or a group home setting, ever. He's just too smart. We've come a long way and we've had a lot of help to get there. This is my kid and they've given me the opportunity to teach him to be a kid.
VO: Self-determination. It means having the power to choose, helping each other to speak up for what we want and working as a team.
Mary Jo McBride: Person-Centered Planning is a process of getting at what a person really wants in their life. Gathering information in lots and lots of different ways about how a person lives now, how they want to live. It's creating some dreams for that person. Creating a life that they really want for themselves.
Charles Harvel: People should learn how to make their own decisions and learn how to make their own choices instead of somebody having to make them for them.
Lynn MacDonald: People First is speaking up for ourselves. What we wanted to do was to make the group stronger. There were many Person-Centered Plans that we could choose from. We all decided to pick The Path because The Path offered team-building for all of us, a community for all of us, a way for all of us to come together on issues and problems that we were all facing in the community. And this is things individually as well as for our group, our People First Group for things to work on. It talks about how we want the system to be for all of us in our lives. What are things we want to change, what are things that are going good? And it looks at the system, at how it is now. It keeps us on a steady track.
Charles Harvel: When we got together and made that path, everybody got involved. It just wasn't one person; it was a whole bunch of us that got involved. We picked out things that we wanted, more jobs, better jobs to go to, more money.
Lynn MacDonald: Some of the things that we all talked about was they wanted to hire and fire staff. They wanted to be a part of that.
If we were living in a group home we want to be able to say, here's what we want…"
Lynn MacDonald: They would just like to be able to hire people, keep them on, pay them better wages. That was one thing that they had brought up was well, we got to pay them better. They gotta be able to make a living in order to support us for the things that we need.
Charles Harvel: "When all the people came up with the same ideas it got things out in the open…"
Lynn MacDonald: A lot of them have hopes and dreams, that they'd like to be married or live with someone that they truly care about. Own their own house, have a dog or some of the things that we enjoy.
Lynn MacDonald: The other thing you talked about is "together we're better." Can you tell me why together we're better?
Charles Harvel: If everybody can learn to work together, we'd get more done and more accomplished. Whenever we come together we get stronger.
Lynn MacDonald: After we were done with it we really felt like a team. There was a lot of passion that was going on. Excitement. Everybody knew what they wanted to do. There was a direction, a vision, a way to reach out to the community. Now we all together can develop a common vision. A lot of the leaders within the group try to mentor to some of the other people, probing them to say how do you feel, what do you think about this?
Charles Harvel: You get the group together to talk about this. Sit down and talk about this as a group. That's what People First is all about. I'm a good listener. Anybody can come to me and tell me what's bothering them.
Lynn MacDonald: As an advisor of People First, one thing that I've noticed is before, people were very much learning about themselves, how to make their own decisions. And what to do and problem solve issues within their own lives. Who they needed to speak to and that type of stuff. Now they're to a point where they're coming together as a group, reaching out to the community, learning how to problem solve together on issues. So it's really neat to see the difference between them reaching outside of themselves.
Mary Jo McBride: There really is room for everybody, nobody gets left out.
As we all have friends and family and colleagues and community around us, Self-determination and Person Centered Planning is that concept. How can we support persons with and without disabilities to have stronger circles of support around them? Whether it is family, friends, community, neighbor. That I think is the crux of both Person Centered Planning and Self-determination, making those circles stronger.