Removing Environmental Barriers: Independent Living for People with Psychiatric Disabilities
This information is available in PDF format upon request.
Published by the Research and Training Center on Independent Living (RTC/IL), The University of Kansas, Room 4089 Dole Center, 1000 Sunnyside Avenue, Lawrence, KS 66045-7555, voice: (785) 864-4095, TTY: (785) 864-0706, Fax: (785) 864-5063.
2003 Webcast Moderator: Dot Nary
Presenters: Tana Brown, Melisa Rempfer, and Elizabeth Sheils
Dot: Good morning. This is Dot Nary with the Research and Training Center on Independent Living at the University of Kansas in Lawrence. And on behalf of RTC/IL, I'd like to welcome you to today's webcast. The topic is, "Removing Environmental Barriers: Independent Living for People with Psychiatric Disabilities," and I'll be your moderator for the session. I would like to welcome our presenters: Tana Brown, Melisa Rempfer, and Elizabeth Sheils. We appreciate you sharing information today. For the audience, I want to mention first that we do have a discussion board up on the website. If you click on "discussion," you can submit questions to us during the webcast and we hope that you will. So, feel free to use this feature as you are listening. If you have questions for the presenters, please log on to the discussion board and send your questions in and we will try to address them during the webcast. If you think of some at the end or after the webcast, we can address them then, too, over the Internet. I hope you'll participate in that way. I think the topic is especially interesting to those of us who think of things like narrow doorways and lots of steps as the environmental barriers people encounter.
Our presenters will be addressing a different type of environmental barrier that most of us never consider, but certainly need to be aware of. Tana, we do have bios up on the website. Is there anything you would like to add or tell the audience?
Tana: Well, in addition to doing this work, I'm also interested in health promotion for this population and have started some work in that area as well.
Dot: Great. Maybe you can tell us about that at another time. Melisa, again, we have your bio up, too. Is there anything you would like to add?
Melisa: I don't think there is anything to add to that. Like Tana, I do have some additional work that I’m starting to develop that is related to the mental health needs of homeless women and children. So that is kind of a side interest of mine in addition to the current work.
Dot: Good. Thanks for sharing that. Elizabeth? Nothing. Okay, thank you. I do want to mention that both Tana and Melisa are faculty members at K.U. Medical Center in Kansas City and they did some of their graduate training and work here at the Research and Training Center on Independent Living, so it's good to see people carrying that philosophy out in the field of research. Tana, I'd like to start with you, as principal investigator. Why this research area for this group?
Tana: Well, as a group, all of us were interested in community living for people with psychiatric disabilities. And we also had an interest in cognition or how people's cognitive impairment might present barriers for people's community living. And so that sort of naturally led us to the grocery store because many people with psychiatric disabilities have problems with things like information overload; easily becoming distracted or having trouble identifying the most important information in the environment. And if you think about a grocery store, there is not a much more rich environment with information. So, for example, if you think about Coke, that you're in the store and you want to buy Coke, first you might get to the aisle and find it, but then, you have to make all these other decisions. Do I want it in bottles or cans? Or diet or caffeine free or lemon and the amount of information to wade through is complex.
Dot: We certainly all experience that. And I'm sure it's more difficult for some people than others. How will the barriers in grocery stores be reduced or removed? What actually does the study involve?
Tana: That was somewhat of a challenge for us because it wasn't possible for us to go in and ask the grocery store owners “could you please make it easier?” In fact, the grocery stores want to make it difficult for you to find what you want simply because they would like for you to purchase the things that they want you to get. So, instead of that, we really focused on helping people learn about the environment of the grocery store and provide them with adaptations. So for example, in terms of learning about the store, and its environment, it's easy to become overwhelmed, but if you know what are the natural occurring cues, you could better take advantage of them. So we teach people for example to use the overhead signs that are in the store. We teach them about scanning the shelves from top to bottom, with the idea that oftentimes they place the cheaper brands in the more difficult to locate spots. And then we do provide some adaptive devices — so we teach people a script for finding items and provide them with a cue card that has that script on it so that they can use it as they are shopping.
Dot: So you're taking an environment that most people have to learn to navigate and deal with even if they hate shopping, because they have to get food, and trying to find ways that people with disabilities that might have cognitive effects can negotiate that situation more easily?
Dot: You mention contextual clues, some of those are the signs above the aisles, that tell you where the vegetables are or something like that?
Tana: Yes, we teach people how to use a store map and if the store already has that, to take advantage of it. But if not, we've created maps of the stores that they shop in that they can use to help them locate their items. We also talk about just asking for help and who you might ask for help if you need to find something. And practice doing that while we are in the store.
Dot: What is the length of the study? What is the time frame?
Tana: The participation in the study is a nine-week intervention, so they typically meet twice a week for two hours at a time.
Dot: Okay. I'd like to ask Melisa a couple questions. I know that this project involves PAR principals, Participatory Action Research. I'm curious as to why you chose to include this as a strong element in the study and Tana, you might address this, too, but I will ask Melisa first.
Melisa: The PAR principals are involving the perspective of the consumers who are involved in the project and the people at the community sites where we conduct the study is a really important aspect of the project for us. And I guess there are a lot of reasons why we decided to emphasize that. I mean, I think the first most obvious one to me is just as you mentioned, Dot, we had both been involved with the work at the Research and Training Center and so for me, really, that was my first exposure to how to do PAR research. So I think that is kind of one reason. But in addition to that, certainly one of the things that we wanted to emphasize was we try to have close ties with the community agencies or the community mental health centers where we conduct the research. We wanted to be consistent with some of the values of those agencies, and have certainly found it has the ability to enrich the project by giving us another different perspective by involving more and more people in the research process, the consumers that we work with, the staff members from the agencies, and others. I don't know if Tana has anything to add to that.
Dot: It's good to know graduate training that involves independent living goes far out in the community once people graduate.That's neat. Tana, could you comment on whether PAR is harder or easier to use from a researcher’s perspective? There are certainly some benefits. What about the whole picture from a researcher’s perspective?
Tana: I think it's both. In some way it's easier because the consumers are familiar with the other consumers and can help us with recruitment or making what we are doing more interesting or relevant to the individuals that are going to be in the study. And it makes it more exciting for us to sort of have that real connection. But there are some situations where it can become more difficult. For example, we have different priorities, as the researchers, we often have a focus on eliminating any kind of “confounds” to the design and making sure that we're adhering to research principals. The consumers are often most interested in making sure that as many people can be included as possible, and making it as real as possible, and sometimes we have to make compromises both ways.
Dot: Can you give me an example?
Tana: For example, we have chosen to select stores that participants shop in to do the training, but we do our testing in a shop that is unfamiliar to anyone. And that may make it more difficult for them, you know, in their real life if they will shop in a store they are familiar with. But we needed to do that so that every participant would have the same advantage or disadvantage, so to make it unbiased from a research perspective.
Dot: That is the difference between a research study and a community program.
Dot: In a community program you would want to minimize unfamiliarity, but in a research study, you want to standardize settings. That is a good example, thank you. I wanted to ask Melisa, I know that measurement is not often appreciated out in the community, and I think sometimes we feel if we can see it, why do we have to measure it? But I think in research, and certainly in this study, I would imagine measurement is an important issue. Could you talk a little bit about that?
Melisa: Sure. Yes, certainly as part of the research aspects of this project, we do a lot of sort of formal measurement in the study, and I think what you mentioned about that idea of seeing it or observing it, you know, believing it, I think it has pluses and drawbacks. From a research perspective, sort of starting with the drawbacks, one of our experiences has been that we really have found in conducting the formal measurement that sometimes the things we see are the things that we observe subjectively aren't always consistent with our objective measures. Tana and I have often told the story of the first time we ever conducted this grocery shopping group. A couple of years ago when we were in the early phases of developing it, we were both very enthusiastic about how the project was going and we really, you know, felt or observed that the group seemed to be enjoying the training program, and seemed to be benefiting from it. We were both so enthusiastic and confident, but then when we looked at the objective measures, we found that they weren't necessarily consistent with what we thought we were seeing. In other words, we thought people were becoming more accurate in their shopping and maybe the objective measures weren't holding up to that. And I think what that pointed out to us is that there may be differences between how you experience something and then how you measure it. And I think there are some down sides to that, or down sides to measurement in that regard, because you know certainly it's hard to say which is the correct aspect. Were we correct in what we subjectively thought that we saw? Was the measurement correct? I think it's important for us to remember that — it's important to have objective measures but we try to understand there are limitations to that. That we can't really perfectly measure anything, really. So for instance, we try to measure grocery shopping. And that certainly is a difficult thing to do. So we've chosen you know, we measure it on the basis of how accurate people are in selecting items they want. We measure it in terms of how efficiently they go about their shopping. But we also recognize those are kind of artificial measures to some extent and so we try to supplement it with that subjective side, too.
Dot: Could you talk a little bit more about exactly what is being measured in the study and why you would use certain measures?
Melisa: Sure. I guess some of the main measures are measuring shopping skill, as I mentioned. And that is a more formal objective measurement where people are invited to the grocery store. We take people to the store, and have a task where we ask them to shop for ten grocery items.
Then we observe their performance of selecting and buying those items. So what we look at is, as I mentioned, how accurate they are in getting the items that were on the list they were given and how efficient they are in going about that task. In other words, do they get the items quickly and move through the store in an efficient fashion, or is it more difficult for them to organize the shopping in the sense they have to go up and down the aisle three and four times in order to find the item they are looking for. That is the grocery shopping measurement. We also look at more traditional testing of cognitive ability like memory and attention. But we also are interested in like I said, the more subjective side of things.
Dot: And the application of those.
Melisa: Right. We also ask the participants for their opinions or experiences about shopping as well as about the training program that we have. So we do that through focus groups, we do that through some self-reporting questionnaires that people fill out, and so forth.
Dot: Thank you, that is good information. I do have a question from someone in the audience. Elizabeth, hang on. I have a couple questions for you after that. We know you're there. Tana, I'll pose this question to you. Someone has written in to say PAR is a good thing, but how does one try to involve those with severe psychiatric disabilities in the process so they are not marginalized. Are there specific accommodations to enhance the PAR process for these folks?
Tana: Yes, definitely. It really depends on the individual and in some cases, we have not really had to make accommodations. For example, one of our consultants on the project is Fred Frese, who is an individual who has a Ph.D. in psychology and is well-known in the field, but also has schizophrenia. He attended our initial planning meetings and provided us with just great feedback in terms of suggestions. You know, probably one of the biggest issues is transportation. Most of the people that we are working with don't have their own cars, and so, almost every time we plan something, we have to then think about how are we going to organize for people to get where they need to be.
Dot: That is a cross disability issue, transportation.
Melisa: Yeah. Could I add something to that?
Melisa: I was thinking one of the things we also found, we focused on us as researchers trying to be flexible in what the ways in which consumers are involved in the project. As Tana said, we tried to individualize it. Various consumers are involved in the project and depending on what their backgrounds or interests or skills are, they might participate in different ways in the project. In other words, some people are really comfortable with public speaking and therefore, they are involved in the actual training program and doing the skills group and other people are more comfortable with doing recruitment and working one-on-one with the other consumers in the project. So I think just that us being flexible and individualizing things is an important way to include consumers who may have different skill sets or comfort levels, that might be partly what the person who asked the question was addressing.
Dot: Thank you. That is very helpful. Elizabeth as someone involved in the study as a staff member, I wanted to ask you what do you like about being involved in this particular study? Why did you agree to do it?
Elizabeth: Well, I agree with what Tana was talking about earlier, people having trouble making decisions in stores. Another big problem with people with mental health issues is their fear of being in stores, because it's big and crowded. So, I appreciate working in it because it's getting people involved in the community, not relying on their case managers or ISE workers to help them but to go and do their own shopping. Many of us don't have very good shopping skills, and it has been great to see people get excited about going into the grocery store.
Dot: That's good. It's a necessary evil for most people.
Elizabeth: It's part of the consumer recovery movement, I feel. This project goes along with that as well.
Dot: Good. How do you feel that the consumer perspective strengthens the study? What does that add to it from your perspective?
Elizabeth: Well, I think being a consumer has helped me in recruiting people for the study. We include everybody at the center. I work at the Bert Nash mental health center in Lawrence, Kansas. We include everybody, and because I’ve known people for a while, I know who might benefit from the study. I might find somebody that I know is afraid to go into the store and tell them that we will be going with you and that it builds confidence. I also think that I might know somebody who is constantly short on food and this will help them spend their money better so their food stamps last longer.
Dot: Sure, because part of it is to help people choose the most inexpensive product if it will meet their needs, right?
Elizabeth: Yeah. And I also think people are more willing to listen to me because I am a consumer, and they are able to voice their concerns to me and I'm able to bring this up in the intervention. And I think we have an hour where we teach a class, the intervention and we go to the grocery store for an hour and people will sometimes rely on me to ask questions about how do I find this, and how do I find that or will you go with me.
Tana: I would definitely acknowledge Elizabeth. I have attended several of the sessions that she’s led and have noticed that consumers frequently go to her first with questions.
Dot: Good, good. Elizabeth, I think that there are a lot of ways to be involved and it sounds like this is a meaningful way. What advice would you give to other consumers about being involved in similar research projects either as staff or participants, anything would you tell them to look for or be aware of or speak up about?
Elizabeth: I'm particularly interested in the consumer/staff aspect of it. And I think it's good, I think it shows people that we can work at recovery, it has been a great confidence builder for me to be able work with this project. It also has taught me a lot about things that have to do with working at a mental health center like confidentiality and things I have to be careful about and have to sign papers about. So I just think from my perspective, showing people there is recovery, and that you know, that is about it.
Dot: Modeling in a lot of ways
Elizabeth: I think so, yes.
Dot: Thank you. It has just occurred to me a question that I had wanted to ask Tana that I didn't. Tana, I think in choosing the topic, you had selected grocery shopping skills based on input. Could you tell me about that?
Tana: We went to the community support program that is in Kansas City and interviewed consumers about what were important living skills and areas that they felt as if they currently relied on others for assistance and grocery shopping came up frequently. And in addition, once we sort of decided on grocery shopping, we talked to them specifically about what were their issues related to grocery shopping, and the economics was a big one, that finding food at the lowest price or being able to get the most for your money was very important. So we made sure that when we designed the intervention, we focused a lot on that.
Dot: Good, good. So it was people experiencing the issue who gave you ideas about what to study in terms of improving independent living skills.
Dot: I have another question that has been written in, and I also want to encourage the audience to send more in if they have them, now or later. The question is: What can we expect to change as the result of this study? I'll throw that out to the three of you, if you want to start, Tana, that's fine. I guess someone is asking okay, so what will happen? Or what will change?
Tana: There is sort of an immediate goal and a longer term goal. We certainly hope that participants in the intervention will find grocery shopping easier, and more pleasant for them. And that they will have greater confidence and be able to actually buy more groceries for less money. We also are using staff and consumers that work at that particular site to do the intervention, so we hope that some of the skills they gain in leading this particular intervention might — they might apply to other projects. So, for example, this is actually in an earlier pilot of the project, but we had some of the group leaders after doing the grocery shopping group, developed their own intervention for meal planning, based on many of the same principles that we had used. And so that's really what we want to do, ultimately. We don't want so much to be designing a specific manualized grocery shopping and other life skills intervention, but more want to be able to identify strategies that can be used across living skills and for staff and consumers to be able to take advantage of those.
Dot: What I'm hearing is you're really trying to improve the quality of life for people with schizophrenia by teaching them — transferable skills —
Dot: So if you can find things in the grocery store and not be distracted by all the signs and displays and people giving samples and things, that those — that skill or ability might transfer to other independent living areas of their lives. Has anyone suggested any other areas or do you have any in mind? How these might transfer?
Tana: Well, meal planning has come up a lot. I guess because it's closely related to grocery shopping, and there is a lot of issues related to weight gain for the particular population.
Dot: Because of medication?
Tana: Yes. And just, you know, our general lifestyle in this country. And there aren't a lot of services for people that have psychiatric disabilities or it's more difficult for them to take advantage of things that might exist, so that seems like a natural extension.
Dot: Elizabeth, have you had any feedback from participants in the study about the skills and how they might use them in other ways?
Elizabeth: I was going to follow up on what Tana said which has to do with your question, too. We're starting on April 1st a class on meal planning and cooking and shopping for one, which was a direct result of the first two interventions. People were interested in continuing with this project, not just with this project, but on our own, go ahead, have a meal planning class and cooking and shopping for one. We were cooking for 15 or 16 people at the center, but now, we don't do that anymore. People want to learn how to cook for themselves. I think that is a direct outcome of this project.
Dot: Great. That's good. I'd like to go back to someone named Fred Frese who’d come out and spoken to a group at the Med Center. Melisa, can you talk a little bit about him? We do have a couple of his articles posted on the website for people to read. But he's a really interesting person— it sounds like he has a lot of influence in the field.
Melisa: Yes, he certainly is a very active person in terms of talking about issues related to consumerism. Talking about the need to incorporate a consumer perspective and incorporate recovery principles into sort of mainstream mental health services, as well as research. So he has really a lot of expertise and thoughtful things to say on that topic. We personally brought him into this project, we have found his consultation really helpful. He has been involved in the project for about, I guess, two or three years now. And as Tana mentioned, he has come to our initial planning meeting and has had contact with us — on going contact — since that time to advise us on ways that we can involve consumers into the research process, ways we can be as respectful as possible of differing perspectives, ways we can kind of do that, negotiation of the research perspective, merging the rigors and rigidity of us as researchers with the priorities of both staff and consumers out in the field, and he has done that in very specific ways. Giving us really concrete advice as well as, I think, just in terms of inspiring us to try to remember the philosophies and the things that he advocates in terms of consumerism. And you know, nothing without — nothing about us without us.
Dot: He certainly is a model to acknowledge that he's a person with a psychiatric disability and a clinician, that takes guts.
Melisa: Right. I've seen him speak very passionately about that personal process for him and how important it has been, and I think you know, just heard him inspire other people to be able to do the same, you know, that there are people who are consumer providers who maybe aren't open about it but who are out there in the field, so I've seen him inspire other people to become more open about that as well.
Dot: I have another question that someone has sent in. And it refers back to the discussion we had about Participatory Action Research and influence of consumers. This person has written in to ask, are we really talking about sharing of power here and how does that work and does it really work in a research environment? Could you, Tana or Melisa or Elizabeth, anyone have any comments on that?
Tana: I guess to be perfectly honest, I am the principal investigator of the grant and in some ways, we're the ones that are in charge or have power from that perspective.
Tana: But we really try when we are in the decision-making process to make sure that we include all voices, and to accept them all equally.
Dot: And that's a challenge but it sounds like you have woven it into the project. Tana: I appreciate Elizabeth's perspective and if she feels as if she has a voice. Dot: Um-hmm.
Elizabeth: In the project?
Elizabeth: I definitely feel I do have a voice. I'm able to help with the preparation of the class, I'm included in that and in the grocery shopping intervention and I have had a lot of leeway in recruiting people. Also, I do the pre-testing, I don't do any of the cognitive testing or anything like that, so —
Dot: That takes training, typically.
Elizabeth: Right, you have to have a professional degree to do that. I feel like I have been included as a staff person. Does that answer your question, Tana?
Melisa: I think that for other researchers or other people who are interested in maybe trying to deal with more of the power or partnerships between researchers at universities or whatever, and people out in the fields consumers and staff people out in the field, I think one of the challenges that we have tried to focus on is just making sure that we stay in communication with each other. In other words, we have sort of frequent meetings and we make sure that everybody is involved in those, so we don't just you know, invite the staff people at the agencies to those meetings.
We make sure any meetings that we have among all of the people in the project involves everyone, we make sure consumers have transportation to the meeting if they are able to come and so forth. So I think that by keeping those lines of communication open, that is the way that we can try to maximize the power sharing or maximize everybody having a voice.
Dot: Good point. That leaves me to another question. That is funding. I think that this issue of Participatory Action Research and involving the people who are affected by research in the process is an important one. And more and more it is being woven into the funding mechanism. Could you talk about that a little? Were you encouraged to do it this way? Are there incentives or is it still something that is hard to work into a research proposal because it takes more time and resources in a lot of cases?
Tana: You know, I think it depends on the funding agency.
Dot: How this is project funded? Tana: This one is through NIDRR, Dot: Which is?
Tana: The National Institute for Disability Rehabilitation and Research. And in that case, we knew that they value consumer input and so we were encouraged that we could include that. And when we did, that was one of the areas in which we received some of the most positive feedback about our proposal and we believe it had a lot to do with why we were funded from that particular agency. We were doing some sort of follow-up work and have submitted a NIH grant to the National Institutes of Mental Health, and that’s a bigger challenge in terms of incorporating principles, and having them appreciate them. So I think in that case, we'll still be doing Participatory Action Research but it won't be something we'll highlight in the grant proposal.
Dot: Do you see this emphasis on participation as a trend that will continue and increase?
Is it a momentary thing in response to some people who don't want to be left out or do you think it's the way research will go in the future?
Tana: I think it's the way it will go. And I think that as its successful, more people will believe it needs to be an essential part of research.
Dot: Well, let me ask if a person who has a psychiatric disability, and is interested in the skills that you're training through this project would want more information, I guess, what would be — how would this information be used maybe to help that person and other people in the future?
And how would people get information about the results? Because one issue I know for many consumers that has been pointed out, is sometimes the information gets sent to professional journals but doesn't get out to the people who are very interested in it, who don't subscribe to those type of things. So two-part question: How will people see the results of this and because I think you're right, I think these transferable skills are important. What areas do you think that this might extend to over say, the next ten years?
Tana: In terms of doing the dissemination, just a real specific pragmatic point is that one of the Participatory Action Research activities we plan to engage is to have focus group with consumers to talk about how to do dissemination and how what is the best way to get the information to other consumers. And as we have begun to do presentations, we have done several of them at conferences where there is a consumer audience. So we've attended the International Association for Psychosocial Rehab, which tends to draw both consumers and staff. The National Alliance for Mentally Ill and the Recovery conference that is held here in Kansas.
Dot: That's good. Are there publications and, Elizabeth, I don't know if you have ideas about this, are there publications to post them on or Internet sites? I know the webcast that we're doing today is one way of getting there information out to the field, to let people know, what research might be available that will help. Are there other ways to do that that you know of or are planning on?
Elizabeth: No, not really.
Dot: Okay. Those are some things, I know that we have, with the input from our presenters, listed some links to web sites on our web site for the webcast. So those are some places where people might be interested in the results, too.
Tana: We do have a website for our program. And it includes information on what we are doing and place where people can get information on how to purchase the manual, and then, once we have our results analyzed, we will be posting that as well.
Dot: Good, good. Again, I would imagine as a researcher that you always have to be planning what you're going to be doing next, even as you're conducting a project. Do you have some ideas about what you might want to study next or implementation of this? Just because I know this is going to be a line of research that you're very interested in, and including people in. Do you have any next steps in mind? I'm sure that is linked to funding, also.
Tana: Yes, we do. I often joke that I think I will be doing grocery shopping for the rest of my life. But we've already submitted a couple of projects looking at this issue of learning potential as being perhaps a better indicator of people's community living skills performance, and also maybe a way that we can better match our intervention strategies with particular individuals.
So for example, if an individual finds it easy to learn new information, for those individuals we might take more of a skills training approach, but for individuals where learning information is more difficult, using compensatory strategies may make more sense.
Dot: Can you explain that? Compensatory strategies?
Tana: Very specifically, in terms of the grocery shopping task. One of our ideas for compensatory strategy is to create a grocery list that is organized in the order in which the items occur at the particular store the person shops at. So that when they write out their list, the items would be in order and as they go through, they could find them more easily.
Dot: So, all the dairy products together.
Tana: Right. They know once you know, if I get to the second item on the list, I must have passed what I was looking for.
Dot: Got a few more questions. This one I think relates just to what you were saying. So what is next? If we're able to make this kind of progress for those with psychiatric disabilities shopping in grocery stores, how far can we push this training something how about department store, hardware stores, other ideas? Is that kind of the gist of what you're saying?
Tana: Well, yes, but even I guess farther than that, like we have looked even in this current study we're looking at do these skills transfer to the drugstore? And even without training, can people use some of the skills they learned in the grocery store when they shop in the drugstore now. Really we're hoping that people can learn strategies that they can use across daily living skills so even when they are learning how to ride the bus, or balance a checkbook or those kind of things.
Dot: Another question and thanks to the audience for sending these in, they're good. Someone has written in to say: Is it possible to adapt your research and outcomes to other populations? Say those with traumatic brain injuries, or those with other developmental or cognitive different disabilities?
Tana: I guess I'll speak to this as well. We did do a small pilot study with some people with head injury, and it may made me appreciate the sort of individual differences and issues that might be difference for different disability groups. So, I came away thinking that some of the strategies we're using were not as effective with that population and that if we were to go further with that, we would need to adapt some of the training programs.
Dot: Thank you. One question, we at the RTC recently conducted a survey on important issues of ,people of disabilities — all types of disabilities — around the country. And folks responding from all disability groups including psychiatric disabilities, told us that being able to work and earn a salary that you can live on is probably the most important issue. This issue came up as one of the top three for every group. I wanted to ask how — what you're teaching and the training and the ability to deal with different types of situations, might apply to work situations for people at some point? Would that be a progression at some point? And I'll throw that out to all three of you.
Melisa: Well, I definitely agree that or I recognize that the working, ability to work and maintaining employment and all of those issues are so essential for everyone. And I think that there is certainly a lot more that we need to do in the field, in the service provision field as well as in research to be able to promote that more and make that, help people with that goal more. But I'm not sure, I would be curious to see with what Tana and Elizabeth think. I don't know that we've really focused on that in any way that from a research perspective we can reasonably say we're assisting people in that. What do you guys think?
Elizabeth: This is Elizabeth. I would like to add that, I think it's getting people out in the community and away from the mental health centers as much as possible. And I think it is encouraging people to get out there and do what they want to do with their lives rather than being told by doctors or psychologists what they can do and what they can't do.
Dot: Thank you, good point.
Tana: That is a good point, I think. I would agree that I don't know that we're directly addressing work and there are some other researchers that are really doing some great work in that area, but one thing I would say that we're interested in, that we think we might contribute to this area in general is the idea that, all community living is not the same. And in some of the work that has been done up until now, when people look at outcomes, they'll just very globally look at a single measure of community functioning on a scale from 0 to 100 — how well are you doing.
And what we are trying to look at or emphasize in our work is that grocery shopping may be a very different task than cooking and somebody may be a good cook but not a good grocery shopper. And so in the work environment, I think that is particularly true, that often times work in general is just seen as you can work or you can't work, and not differentiate the type of job and making somebody unsuccessful in this job but another job might be a much better match for them.
Dot: Right. So, again it might be transferable skills that help people to figure out what type environment they want to be in to work, even.
Elizabeth: This is Elizabeth. I also think it helps people that are living in group homes. They are shopping — their shopping is done for them. It gives them a lot of freedom to go out and doing dew shopping, buy their own food and learn that to do themselves when they move into their own living environment.
Dot: Good training, good preparation.
Elizabeth: Yes, sorry to interrupt.
Dot: That’s OK. I think you've given us a good picture of what you're doing and the way that you're doing it, which is very interesting, very helpful. Do you have anything else to add for the audience or any points, maybe I haven't asked about that you feel important to bring up?
I think we've covered quite a bit of territory.
Dot: Well, I think it's great that you have joined us to tell us about it. And that NIDRR is funding this type of research. Again, Elizabeth points out, these are skills that are needed when people move from maybe group environments into individual ones or any time, so that’s really helpful.
I would like to remind the audience that you can log on to the website, you're probably there, and look at the website for this particular study, as well as some other websites related to psychiatric disability issues. There is a discussion board, so if you have questions and want to submit them, the presenters, Tana, Melisa and Elizabeth, will be monitoring the board to see if they can respond to any questions about their work. And also, I encourage you to fill out the evaluation form on the website. You can send it in by fax, or you can simply email me comments. My email is at the bottom of the website. We hoped to have that available to fill out and send it online but we had a little trouble with that. Feel free to print it off and complete it and fax it in or just email me the comments. Again, we are very fortunate to have these presenters, thank you all for coming and being available.
Tana: Thank you.
Melisa: Thank you for inviting us, Dot.
Melisa: I also want to encourage the audience we on love to hear their comments, information about their own experiences with similar projects, or with PAR and so forth.
I would like to encourage people to feel free to get in touch with us.
Dot: Good. We will make sure somebody responds when questions or comments come in. Tana, anything else from your perspective?
Tana: No, again, I thank you for inviting us.
Dot: Good, well, thank you. I want to again thank our presenters, thanks to the listeners for taking time and submitting good questions. I also want to acknowledge Jim Budde and Glen White and the staff at RTCIL for their support and interest in using innovative ways to get this information out in the field. And I would like to thank our producer at K.U. Continuing Education, Mark Crabtree who worked hard to get us ready technologically to do this and also our captioner. And I hope that we have been able to speak slowly enough so that you can capture all this. Thank you very much for joining us and again, please be sure to log on to the website and send us any questions and look at the materials we have prepared. We do have reviews and summaries of the study that was discussed here as well as the issue of Participatory Action Research. So you can get those documents from our website and if you have comments or questions, please do be in touch. And at this time, when there are so many issues going on internationally, we need to remember that these issues in people's everyday lives are important. I would like to thank the audience for logging in and listening today. Thank you. Bye bye.