SW 644: ISSUES IN DEVELOPMENTAL DISABILITIES

PERSON CENTERED PLANNING

Mark McManus, M.S.S.W., Ph,D., and Beth Mount, Ph.D.

Unit 1

(Slide 1) SW 644: Issues in Developmental Disabilities

(Slide 2) Video of Mark McManus

MARK: Hi. I’m Mark McManus, and today I’d like to talk about planning. I’d like to talk about traditional planning, how planning was done for individuals with developmental disabilities in the 1960s and ‘70s. Compare that with how planning is done today, a term called person-centered planning, and maybe talk a little bit about what planning may look like in the future.

(Slide 3) Traditional Planning

To begin with, traditional planning was done through assessments of individuals with developmental disabilities. A professional would come in and test for a specific skill. For example, a speech and language clinician would come in, do an assessment on speech and language, and then prescribe a treatment plan or some ideas and goals for that individual to work on.

The assessments then were put together with a team, an interdisciplinary team. So the speech therapist might be also working with an occupational therapist, a physical therapist, a school or vocational person, group home staff, or institutional staff, a whole group of people coming together from different disciplines, all doing their assessments on different aspects of the individual’s life to help that person fit into the program.

We have a program here. We have an institution. We have a group home. We have a work setting. Those settings then would say we have an opening, and an individual would come into the service system and fill a slot. The assessments, then, would help that person fit into that service and make use of that service to progress that person in skill development.

(Slide 4) Person-Centered Planning

In contrast, person-centered planning takes a little bit different approach and crafts a lifestyle around a person with a disability. The person-centered planning involves taking a look, an inter-visionary look, of different people that are involved in the person’s life. It may be a speech and language clinician or a teacher, but more often it’s family, friends, and interested persons that are involved in the individual with the disability’s life.

(Slide 5) Person-Centered Planning (cont.)

Those people come together and look at different aspect of the person’s life and create a vision for what is possible for that person in the future. The goal is to help improve the quality of life for the individual with the disability. In so doing, they help the, take the individual gifts and capacities of a person and help that person find and utilize different aspects of the community.

So it’s helping the person not to fit into a slot, but it’s going out and looking at what’s available in the community, creating what’s available in the community, and crafting that around what the person wants. So two different approaches, and sometimes those two approaches come together and meld their ways together.

Today, we still have the traditional way of planning and the person-centered way of planning. I’d say we’re moving more toward the person-centered way of planning. Perhaps in the future, we’ll move even further and just say we’re doing planning, and we’ll just take for granted that we’re using a person-centered model.

(Slide 6) Traditional Planning vs. Person-Centered Planning

Let me talk a little bit about some of the different aspects of traditional planning, then, besides the assessment. The traditional way of planning may have provided more support than a person needed or support for a service that they really didn’t need, for example, a person that was going to move into a group home.

Maybe they didn’t need a live-in staff, but because of the other people living in that particular group home, there was live-in staff and 24-hour care available. But maybe that wasn’t required, but that’s the slot that was open, and so the person took it. So the services for that individual were maybe greater than what that individual really required.

In contrast, there might be services available, not only in a greater quantity, but that weren’t of interest or weren’t necessarily of value. For example, maybe this person knew how to cook a dinner, but the group home had someone come in and train people how to do cooking. So they didn’t necessarily need that, but that service was available, that came with the package, that came with the service system.

In contrast then, take a look at, the person-centered planning would say this person needs this kind of support specific to what their abilities are, what their capacity is, and what they want to do. So if they don’t need help in cooking, but they need help in going to the grocery store and going shopping, that’s the help that they get. And maybe they don’t need 24-hour a day care.

Maybe they just need somebody coming in once a day and kind of check and see how things are going. So it’s tailored around that individual so they don’t get more service than they need or the kind of support that they need is actually delivered to them.

Another aspect of traditional planning is the service system aspect. I mentioned that a little bit, that you have a slot that you’re going to fill. So say, for example, an individual wants to have a job and a vocational program has a job at a garden center. That’s the only job available right now, and so the individual with the disability says, all right, I’ll take the job. I want to work.

But they really want to be a mechanic, and they really want to learn how to change oil on a truck, and they want to work around mechanics, and they want to get all the tools. They want to have a totally different kind of job, but this is what’s available, working in a garden center.

So in order to fit into the vocational program, the individual has to adapt and say, okay, now I’m going to learn about plants and how to transplant a seedling into a bigger pot and what kind of dirt and fertilizers and different things go into the pot to help the plant grow. That would be a traditional way of planning.

The person-centered planning would say, okay, you want to be a mechanic. Let’s look at what’s available in the community and create a job and help, look at your interests, create an opportunity for you to work in the community in your ideal job situation, and help to make that work, with the support that’s necessary to make it work. So again, not fitting into the service system, but crafting a service system around the person with the disability.

(Slide 7) Traditional Planning vs. Person-Centered Planning (cont.)

Another aspect is looking at professionals to help train the individual to do the particular job. For example, at the garden center. You might have a person that’s specifically trained to work with individuals with developmental disabilities that helps them to learn how to do the planting and work with plants and do everything at the garden center that their job requires.

In contrast, person-centered planning might not use a professional mechanic, quote, service professional. You might just go to the garage and there would be a mechanic there who would help the person learn how to change oil and what tools they need to do the job. And there might be a professional coming in and giving support to the mechanic and offering some technical assistance and whatnot, but the community actually participates and helps the person learn the job.

So it’s not a reliance just on the service professionals. It’s a reliance on the community members, with support from the professionals, so that the person learns the skills necessary and helps to fulfill their dream.

Some of the concerns about the traditional planning method is, one, that the assessments focus on deficits. So that at the end of an assessment period, we get a picture of the individual that’s negative, that says this person has these problems. These are the concerns about the individual. This is what needs to be fixed.

In contrast, the person-centered planning method looks at the capacities of the individual. It would go out and look for the gifts and the positive attributes of the person, rather than saying the individual is someone who screams when they get upset and may strike out at others and becomes aggressive, is nonverbal, has an IQ of 40, and just is a categorization of labels.

The person-centered planning would look at this is an individual who has an interest in mechanical things, likes to be around big trucks, enjoys lots of noise. The person seeks out companionship, is a very social person, and recognizes the limitations, but doesn’t focus on those limitations.

Another concern with the traditional manner of assessment is that it’s professionally driven. The professionals are the ones doing the assessment, and they’re saying what the concerns are and here is a remedy to correct those problems and build the skills in the individual.

The person-centered planning approach takes a look at the capacities, looks at what the family members, the people who know the person the best, say about the person, looks at what their potential is, but also realizes what their limitations are, and builds what the person needs around that capacity, holistic, generalized network that’s not just professionals. It’s the family members and individuals that really care about the person with the disabilities helping to make decisions with the person with developmental disabilities.

Unit 2

(Slide 8) Person-Centered Planning Tools

Let’s go into some of the specifics of person-centered planning. There are many tools that can be used in person-centered planning, but person-centered planning is the generic name for this type of planning.

(Slide 9) Person-Centered Planning Tools - MAPS

Some of the tools that are used, or some of the methods of doing person-centered planning are, one, the McGill Action Planning System or MAPS. That’s a program that looks at different aspects of the person’s life, primarily in an educational sense.

(Slide 10) Person-Centered Planning Tools - ELP

There is another tool called Essential Lifestyle Planning, and that was developed by Michael Small in Maryland. What he does is he looks at the individual, the person with the disability, and says, this is what’s negotiable in this person’s life and this is what’s not negotiable, and puts things in these two categories, and looks at various aspects of the person’s life, and looks at what can be worked on.

So for example, in essential lifestyle planning, a negotiable might be I can work in a mechanical shop that fixes radios and small electronic machinery. Or I could work in a mechanic shop in an automobile service repair station. So that’s kind of negotiable. I just want to work with tools and I want to be mechanical and I want to fix things.

Maybe a nonnegotiable is that I want to do the work. I want to be able to fix something on my own. I want to learn how to change the oil in a truck. I want to learn how to fix a VCR if the tape won’t go around and the on button doesn’t stay on when you press it, or something like that. But the idea is that the person wants to be able to get their hands on whatever they’re working on and fix it. So that’s nonnegotiable.

So you would take that and work with your negotiables about what you are going to fix, but just knowing that you’re going to work in some mechanical aspect of fixing something.

[background discussion]

[break]

I’d like to give an example of essential lifestyle planning, the negotiables and nonnegotiables applied to a residential setting. For example, an individual might think, I’m living at home with my parents, I’m 22 years old, and I’m ready to move away from home. I think I’d like to live in an apartment and maybe have a roommate or maybe live by myself. I’m not sure, so that’s a negotiable aspect. Maybe live with one other person, maybe two people.

I don’t think I need a staff person all the time, but maybe somebody coming in every day to check and make sure things are going okay, if I need any help. So that’s a negotiable there, somewhat, that you want some help, but you don’t need full time, but you need some, so we’ve got some room there.

A nonnegotiable might be I want to live in a neighborhood that’s close to my parents. So I want to be one to two miles away from parents, at the most, and I want to be on a bus line so that I can ride the bus and go visit my parents when I want to because I think I might miss being at home with my parents. So if I could go and see them whenever I wanted, that might help me to feel better about being out on my own and might give me the confidence that I need and inspire me and motivate me to have success living in my own apartment.

So that’s some ideas about what’s negotiable, what’s nonnegotiable. And by working through that with the people that care about you and support you, you can come away with, okay, this is an idea. This is a plan that we can work towards and put together something that’s meaningful for the person, will assist them in developing the skills necessary, with the supports necessary to make a successful transition from living at home with the parents to living apart from them in the community.

(Slide 11) Person-Centered Planning Tools – Lifestyle Plan

Another planning system was developed by John O’Brien, and his is a lifestyle plan. And he looks at the gifts of a person and what those gifts then can become in reality through their dreams and being a part of the community. Another type of planning . . .

(Slide 12) Person-Centered Planning Tools - PFP

Another type of planning is personal futures planning. Personal futures planning was development Dr. Beth Mount, and she worked on trying to find a person-centered planning tool that would help individuals in times of need. A lot of times, planning is done around a crisis period. Something has happened. A parent dies. A person moves to a new community. The school system, for whatever reason, just isn’t working, and everybody is in crisis. The person graduates from school and then what? What’s next? It’s a time of transition, as well as maybe a crisis time.

So she was looking at what kinds of energy can we pull together with a group that’s committed to this individual that would help the individual plan with his or her family and professionals? And so she developed personal futures planning, and it starts with looking at the background of a person. What are the milestones? What are the key events in the person’s life, starting at the time that they were born to the present?

And takes a look at those milestones throughout their life. It’s not a social history of the individual, but it’s the parents telling the story. It’s the individual with the disability telling the story. And I’ll give an example of why this is so important. One time I was doing a personal futures planning meeting, and the parents were there. The professionals were there. The person with the disability was there.

We were sitting in a living room, and the father said, he crossed his arms, he sat back in the chair, well, I’m just here to hear what you have to say. I’m not going to say anything though, and I’ve asked my wife not to say anything either. And I said, well, I don’t know how this is going to work, but we’ll give it a try and see what happens.

So the first question I asked is, when was John born? And it’s like the professionals just didn’t have that information off the top of their head. John couldn’t tell me exactly when he was born, what the date of birth was. And you could just see the mother just like, I know the answer to this question. I can answer it. We can move on. This is uncomfortable. And dad said, he was born in 1953.

Okay, at least he talked. At least he kind of changed his attitude from I’m just going to listen to what the professionals have to say. You don’t really want to hear what I have to say because I don’t have anything to say. And then the next question was, okay, he was born in 1953. What happened in the first three years of John’s life? Again, the only people that could answer that question were the parents.

So they began to tell John’s story, and John began to add little bits to the parents’ story, and pretty soon we came up to the present day, at which time the professionals could add to the story about who John is because that’s the part of John that they knew.

But by going through this history of the individual, in a storytelling fashion, in a comfortable setting in John’s living room, with his parents, it sets the tone. This is a different type of meeting. This values the input of the parents. It values the input of the person with the disability, and doesn’t rely so heavily on the information coming from the professionals.