In this webcast David Wiley talks about the benefits of Person-Centered Planning and how this tool can benefit students and their families as they prepare for transition from school-to-work. He also talks about ways to prepare students for transition and participation in transition planning. Also in this webcast, two parents — Sandy Mack (Rhode Island) and Mary Hancock (Florida)share their experiences related to each of their respective sons.
David is a staff member of the Texas Deafblind Project at the Texas School for the Blind and Visually Impaired with many years of experience working in the area of transition.
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Presented by David Wiley
Length of time to complete: approximately 30 minutes
CHAPTER 1: Introduction
WILEY: When we do person-centered planning, one of the things that we think about is how it applies to all the other planning that a person does. There’s all sorts of planning that is required by law as a person goes through the educational system.
When you go to school, there’s a planning team there. And then there are other bits of planning that go on.
If you get involved in some sort of community service organization who does in-home assistance, there’s planning that goes on there. And then there’s planning that you do within your family, and there’s planning that you do with other organizations you might belong to. If you go to a church, or if you belong to some sort of community organization, they probably do some planning too.
And one of the things that we try to do in person-centered planning is say, “Can we unify that and bring all those different groups together?”
And say, “Can we come up together with the student, and all the people who may be assisting them, wherever they may be, and come up with a common plan, a shared vision of what we’re trying to do?” and say, “How can we work together?”
CHAPTER 2: Person-Centered Planning vs. System-Centered Planning
WILEY: One of the things that I think families have to keep in mind as they make their way through this process is that they can get tied up into a feeling. I think that a lot of times professionals may encourage this thinking that things happen in a really systematic way and there are systematic solutions to problems. And that there are organizations and agencies who are sort of there to provide answers for you. And one of the things that I think is true is that system-based solutions often are not the best solution.
NARRATOR: We now hear from Mary Hancock, who is the mother of a 27-year- old man with CHARGE syndrome. Mary describes conversations she had regarding early transition planning.
HANCOCK: We started talking to professionals and other parents that said, “You know, get involved in that now, don’t let the systems tell you you can wait until the year before he graduates.”
The other advice that they gave is that I would pass on is to get other professionals involved in that planning within the school system you’re in. Because as long as the planning stays within that school system, they’re going to kind of pigeonhole you and take you where they know to take you.
And deafblindness is very unique in that all of our children cannot be pigeonholed the way they want us to be. So we started involving those professionals in our educational planning meetings, and they kind of helped us drive it to where we needed to be.
WILEY: When you have a student who has a low incidence disability like visual impairment or deafblindness, that throws a wrench into the whole system. Because those systematic solutions that people expect to find don’t apply in this particular case. And I think that’s true for really probably any student.
You know, we could say everybody’s an individual, and everybody’s different. And that’s true. But I think in this particular case, a lot of the solutions that systems apply just don’t work for students who have sensory impairments because they have different support needs, they have different levels of understanding or concepts about what’s going on in the world around them. They have a different kind of information that comes to them, and that affects their knowledge base.
And so many of the assessments or processes that you typically use with the other students just don’t fit real well. And I think a lot of assessments for transition are based on this assumption that the student has this conceptual background that if they are blind or deafblind, they don’t necessarily have until they’re given the opportunity to go out and experience things hands-on, firsthand to find out the same thing that everybody else just sort of gets without even trying.
NARRATOR: Again, we hear from Mary, who describes the process her family went through to expose their son to opportunities with the idea of developing an appropriate and successful transition.
HANCOCK: We had done so much in planning for that portion of it. And he had lots and lots of opportunities to try what was going to be his thing. And we never have been able to figure out what that will be. But what we have found are things that he enjoys doing, even though they don’t pay, things like dusting computers, working in a bicycle shop because he loves bicycles, delivering groceries, he loves to eat and he loves grocery shopping. So he buys all the groceries through a list that we make for our school, and he shops for large portions of crackers and cookies, and milk. And he loves that kind of stuff, and he feels good about himself.
WILEY: And so I think it’s real important that the families understand I need to take a step back and say, “Rather than looking for a system to fit my child into”, and by that I mean a system might say there’s plan A, and plan B, and plan C, which is the plan for your child?
I think you have to say, “Well, none of those plans really seem like those work for my child.” And they need a plan that’s just for them. And so I think that probably one strategy that families should do is to say, “I’m going to forget about common solutions, I’m going to forget about what people say next steps are.”
And but go on and say, “You know, for my child, these are what my goals are.” And they’re individuals, and how can the systems that I encounter help me reach those goals? You sort of turn the equation around and not say, “How will my child fit in the system?” but to say, “How can the system help me reach my unique goals?” And so that’s what we call person-centered planning as opposed to systems-centered planning.
CHAPTER 3: Preparing the Student to Participate in Transition Planning
WILEY: One of the things that I think is really important is finding out what it is that a student really wants. And one of the best ways to do that is to involve them in the planning process and ask them those questions. And for the students who have the language capabilities to be able to take part and answer questions on their own, that’s the best source of information that you can get.
But one of the things that I found is a lot of times the students may not have had the opportunity to really understand what goes into making a decision. And as a consequence, this shows up when we talk to them about it.
NARRATOR: We now hear from Sandy Mack, the mother of a 19-year-old young man with CHARGE syndrome. Sandy’s son has been a student at Perkins since 2002. She describes how her son’s vocational preferences were shaped by his experiences at home.
MACK: He started to do vocational programs at school in a very fun way. Seat weaving, he did canine cooking, and that’s when I think the teachers really understood that he really does do some of this at home because he I think was a natural in making doggie biscuits. He worked in a horticultural program at Perkins. And that I didn’t understand then but now understand was the beginning of them measuring what he could do.
NARRATOR: We see two photographs of Sandy’s son who is deafblind, and wears bilateral hearing aids. He is shown participating in different vocational activities. In one, he restocks sugar and other supplies in a hospital cafeteria.
In the other, he is shown working alongside a Perkins classmate, who is also deafblind, at a local plant nursery. The boys are preparing pinecones to be assembled into holiday wreaths by wrapping a length of wire around them.
WILEY: I think a lot of times people give students opportunities to make choices, but the choices that they give them are things like “do you want to wear the red one or the green one?” Or would you rather have pudding or applesauce? And those are more like impulses than decisions. And so I think that one of the things that’s true is that many students make it up to that point in their life when they’re about to embark on their life’s journey never having made a decision, and not even understanding what goes into making a decision.
So I think one of the things that’s important for families of kids of all ages is that they start helping the students understand what it means to take responsibility for something, and to make a decision, and what all you have to think about when you make a decision.
Think about how it affects you, about it how affects you now, and think about how it affects you in the future. Think what resources are needed in order to make that happen. Think about how your decision affects other people.
Those are the things that I think a lot of times all happen behind closed doors as far as families go, and they don’t bring the students into understanding even what family decisions are made. You know, “what are we going to get at the grocery store to stock the pantry with?”
Well, we need to know what you think, and we also need to know what your siblings think, and what your dad thinks. And sort that all out and help the student understand the whole thing of, like, “Oh, I guess I need to think about somebody besides myself.” And that “Decisions are going on all around me all the time.” “What do people think about in order to make a decision?” And I think that families can assist students in understanding that.
NARRATOR: Again, we hear from Sandy. She describes how involving her son in household activities has developed competencies in tasks that he now enjoys. Those competencies are something she considers when a transition plan is discussed.
MACK: What I found is that if you have a passion, my passion is cooking, my husband’s passion is woodworking. And you’re sharing that passion naturally with your child, like we do. So my son is constantly cooking with me, and he’s constantly down in the garage with my husband.
NARRATOR: We see a page from John’s vocational portfolio. On the page are two pictures of John preparing and then mixing the ingredients for dog biscuits. The text on the page describes John’s competencies and responsibilities.
MACK: Out of that comes a natural hobby, if you will, or talent, or skill set. I don’t know how you would describe it. But if it’s fun for you, and your child wants to be with you, it naturally becomes fun for them. And then together, you’re doing something. And I think that if you can think that sort of longer into transition, it also says, “Okay, well, when we’re thinking about things for John to do, well, he really does well unscrewing bolts and things like that.” Because he’s learned it all with my husband in the garage.
WILEY: Once they reach adulthood, the students, the more independence they have, the more dignity they have, the more social context they have, are all going to be based on their ability to say, “Here’s how I fit into the big scheme of things.”
The analogy I’ve been using lately has to do with the Wizard of Oz. You know, when the Wizard is there, and Dorothy and her friends first show up, and he’s big and he’s scary. It’s all very mysterious. But at one point, Toto runs over and pulls the curtain back, and they go, “Oh, it’s not so mysterious after all.”
And I think that the students need to have that process, need to be assisted in making that process of pulling the curtain back and say, “I understand what’s going on here. So maybe I could do it down the road.” But I think the sheltering makes everything seem like it’s behind this cloud of mystery for them.
CHAPTER 4: Gathering Input for the Person-Centered Transition Plan
WILEY: One of the things that we try to do in person-centered planning is say, “Yes, we know there’s the typical educational planning that people need to do, but can we step out of that for a moment and say, ‘Let’s try to coordinate with other people.'”
One of the other things that I think that’s different for educational teams with person-centered planning is in traditional planning that all schools go through on an annual basis with a student, it’s kind of based on reports. People do assessments, they read reports, there’s a certain sort of element of being clinical in that. In describing a person’s developmental levels, and what’s next on the developmental scale, and this and that and the other.
And I think one of the things that we try to do in person-centered planning is say, “Can we take in another venue and base what we’re doing and gather information in a different way?” And one of those different ways is to ask people to tell stories.
If we can sit down together as an educational team with extended family members, and people who know the student from the community and say, “Tell us stories about this kiddo.” And they say “Well, the thing I remember most is the time we went together to the beach, and what all happened there. And we found out certain things about what they liked and what they didn’t like. And here were the things that were great about it, and here were the disasters we had.”
That’s all new information to the educational team because they usually don’t get that kind of information. So one of the things we want to try to do in person-centered planning is say, “Can we step out of our traditional processes?” And say, “Let’s bring in some people and just have them informally share information and do that with the student too.”
NARRATOR: We see the cover of a communications portfolio created by a student named Jonathan Rosa. Inside the portfolio are pictures of Jonathan and descriptions he has written about what he is learning, and the things he likes to do with his family.
WILEY: I think one of the things that I’ve described somewhat is for students who aren’t able to speak well for themselves. We should be asking the students to tell these stories, for those who can do it, and for those who can’t, we should have the people who know them best to be able to inform us about the student.
But to do that in order to find out little details about things, these are the things that I think clarify things for us. And then we can take that information that we gathered through these person-centered processes and apply them in our traditional planning. And so I think that’s where the systems kind of interface is to say let’s step out.
Let’s step out of the IEP meeting, let’s step out of the traditional planning processes. Let’s gather some people together and informally gather some information, and we’re going to learn some things we never would have learned, and now we’re going to be able to apply that in our IEP planning and our transition planning.
CHAPTER 5: Conclusions
WILEY: A lot of times as a consultant, I’m sort of brought into a situation and walk in the door, and sit down, and someone says, “Oh, well, our consultant is here. You know, what’s next for Hugh?” And I always kind of hit myself in the head. I don’t even know Hugh. How would I know what’s next for him? But I think a lot of times that’s the way people think.
There’s a progression, and all of these students are on some sort of conveyer belt that’s taking them in some specific direction. And all we need is for somebody to identify where that’s headed. And so I think a lot of times you have to stop in and say, “Not everybody’s going in the same direction.” What we have to do is figure out a particular direction for a particular student.
NARRATOR: We see two photographs of Sandy’s son John engaged in some activities that he has demonstrated an interest in. The first photograph shows him pushing a wheelbarrow full of hay at a local farm where he works.
The other shows John stocking and arranging products on shelves at a CVS store. Again, we hear from Sandy regarding her hopes for her son as he approaches transition.
MACK: What I really am looking for is an arrangement in which he can continue to grow, and he can continue to show his strengths, and contribute to society. That’s setting the bar high.
I think that’s setting a different paradigm for a lot of these social service agencies. And I get these blank faces staring back at me when I talk about it. They look at John, they look at his profile, and they say, “You want to do what?” And I say, “Yeah, he really can work, and he really can contribute. And yes, I’d like him to live in a group home with other kids.”
NARRATOR: We now see a photo of a split-level home on a shady lot. It is the group home to which John will be moving.
MACK: And yes, I expect him to iron because we do it at home. And yes, he can sew buttons and really he can. And I have very high expectations for him. And what I’d love is for the community that he’s going to, to be able to match resources with the expectations I have.
WILEY: Different organizations, and different agencies, and different support entities, be they formal ones like state agencies, non-profit organizations, stuff like that. Or informal ones like the community support that you get from your neighbors and friends, and people over at the church, and that kind of thing.
All of those things play a part in helping push through to help the student or the individual as they grow up and become an adult and have a life. And the terms I’ve been using lately that I like is purpose, satisfaction, and joy.
Which is what I think everybody wants a life with; that they find meaningful purpose, satisfaction, and joy in their life. And in order to help the student achieve that goal of having that kind of a life, I think they’re going to have to get support from a variety of different places.
NARRATOR: We now hear from Mary, whose son has been living independently with support for the last three years.
HANCOCK: Be persistent, understand that there are going to be those ups and downs, three steps forward, two steps back, don’t give up. Get your team. Whether it’s with your spouse and family, or the professionals you’re working with. But build that team and keep the communication going great with the team.
A lot of positive accolades for everybody involved. Stay positive, and I think that’s how it’s helped us. We use a lot of humor for the downfalls. I could tell you a million stories on things that should have been catastrophes, but you just kind of laugh about it, and go on, and figure that’s the way it is, and move forward.
WILEY: And I think if they just go to a place and say, “Can you help me get there?” I think you never do. But I think if you can describe what it is you’re looking for and approach systems and say, “What piece can you play in this? How can you help me reach my goal?” And do that across the board, you could put together a comprehensive network of support. Which I think is what everybody needs. It’s what I need.