Assistive Technology (AT) for Persons with Disabilities: Researching Right with Relevant Questions. Presenters. David Gray and Peter Blanck. >> MARK: Good afternoon, everyone. I'm Mark Richards and on behalf of ILRU I would like to welcome you to today's webcast, Assistive Technology for Persons with Disabilities: Researching Right with Relevant Questions, presented by Dr. David Gray and hosted by Dr. Helen Schwartz. Just a couple of technical things we need to go over before we get started. First, we just found out due to technical difficulties, we will not have captioning on today's live webcast. However, there will be -- it will be archived and we will have captioning archived with it within the week. I apologize for that, but it's circumstances beyond our control. Now, before those -- for those of you who are participating via the web, if you have questions, you can E-mail those questions directly by clicking the link at the bottom of the RealOne Player screen and send them to webcast@ilru.org. I'll receive those questions and then I'll voice them to the presenters. If you should encounter problems during today's presentation, please contact our technical support staff at (713)520-0232. Now, I'd like to turn the program over to Dr. Helen Schwartz. >> HELEN: Thank you, Mark, and welcome to all of you this afternoon. We're sorry about the delay and about the technical difficulties, but we are very excited about the program this afternoon. I am the director of research here at the Law Health Policy and Disability Center, and I'm going to be helping to moderate this webcast this afternoon. The webcast this afternoon is part of our community-based resource center project. It is just a part of that. We have a whole series of webcasts about research and participatory action research, and a set of modules on the web to tell you about conducting research and practical tips on conducting research. This afternoon, we're very excited to have Dr. David Gray with us, both us and our collaborators at the Independent Living Research Utilization, are excited Dr. Gray is with us this afternoon to talk about assistive technology and research and in particular to talk about how to develop research questions about assistive technology that have relevance to people with disabilities. Dr. David Gray is an associate professor of neurology and occupational therapy at Washington University School of Medicine in St. Louis, Missouri. He teaches courses on disability policy. He is the principal investigator on several research projects on the participation of people with mobility impairments and on the environmental factors that influence participation. Dr. Gray, we're just really thrilled to have you here this afternoon, and since we're running a little behind schedule, I'm going to go ahead and turn it over to you. >> DAVID: Thank you very much, Helen, and my colleagues in Iowa and Texas. It's a great pleasure to be here and to be able to talk about a subject of what I consider to be great importance to people with disabilities, especially those of us who are using mobility devices. Today I'd like to start with a little bit of a personal story and talk about some research questions that came out of that, and then talk about some studies that we've done past, present and future. On July 14th, 1976, I broke my neck. Up to that point I thought a mobility device was a sports car, a motor boat or an armored vehicle. I had no idea that wheelchairs are essential to the lives of 2 million Americans. As a recently minted Ph.D. from the University of Minnesota, I probably could have developed an exclusively designed group study to examine some aspects of wheeled mobility, but that study, like my doctoral dissertation, probably would have gathered dust in the library and had no influence on the lives of people with mobility impairments, wheelchair design or social policy. Over the past 27 years, I have come up with many questions that I wanted to have answered, but there seemed -- they seemed so specific to my own problems or desires that I became interested in knowing if others shared my concerns. Along the way, I learned to ask my questions of everyone and anybody who would listen. After leaving the Mayo Clinic, I found that outside the medical community, not many people know much or seem to care at all about what one experiences traveling through different environments using a wheeled mobility device. The first turn of the wheel in this journey began when we decided to develop measures of what people do and where they do it. In 1997, we at Washington University in St. Louis applied for and received a grant from the Center for Disease Control to support research to develop a reliable and valid measure of participation and the environment. We began by conducting 15 in-depth personal interviews with mobility device users, close relatives of mobility device users and professionals who served us. We used that information to form our questions for focus groups that were made up of people with mobility impairments drawn from five diagnostic groups: Polio survivors, stroke, spinal cord injury, multiple sclerosis and cerebral palsy. We also had focus groups of the family members and of the professionals who served people with mobility limitations. Now, to illustrate how we've developed questions relevant to the lives of people with mobility impairments, we took these interviews and we took the life stories and came up with some questions for focus groups because it's one thing to find interesting life stories of individuals and you've all read them in novels or even case study reports, but it's another to try to find out what are some of the central themes. So the focus group that we put -- the focus groups we put together were put together because we wanted to find out what people with mobility impairments mean by participation in environments and why is that an important construct or concept to look at? Because in the Americans with Disabilities Act, the goal is to have people with disabilities have -- fully participate in their communities in the larger community of the United States. So both of those terms, the environment and full participation, were really not explored in the literature that well. So we wanted to come up with a way of measuring them. But first thing we had to do was find out what people with mobility impairments -- and the reason we stick with mobility impairments is because that's what we know about -- was what do people mean by participation? So we asked them the following question: Describe what you do from the time you wake up in the morning until you go to sleep at night. And the answers to these questions helped us sort out what was important, what amount of choice they had, and the degree of satisfaction they had in doing the activity. We could then formulate questions for a survey that included doing things, assessing the frequency that we do things, the time taken, the importance, the choice and the satisfaction gained from doing activities. We ended up with 26 activities which include the usual types of personal care activities, but also activities in recreation, employment and social activities. The second question we asked these -- this construct focus group was tell us what helps you or keeps you from doing things that you want to do during your day. The answers to these questions helped us put together a facilitators and barriers survey of the environment, which included such things as personal assistants, physical environmental barriers and assistive technology. The answers to these questions helped us construct a questionnaire for an environment survey and a participation survey; but to ensure ourselves that we had included the major points covered in the construct focus group, that we included a content check focus group. So to rephrase that, the first thing we did is -- after we got the personal interviews, is we tried to find out what groups of people thought participation meant and what environmental barriers and facilitators meant. So we had these 15 focus groups, and we went through all of those transcripts. They were typed up. We had people go through them and find out high frequency and low frequency discussions of words and concepts, and then out of that analysis we came up with a survey. And we put it into hard copy, and we sent it out to members of our original focus group and asked them to tell us, does this survey capture what you said in your focus group? And then we asked them to come in and talk to us about it. So out of the 143 people in the original focus groups, about 45 people came in and they told us a few things such as, don't use such complex terms. Facilitator is kind of a strange word, why don't you use help because that's what you mean. Don't use grids and tables because we had -- we had this whole thing into a grid which they couldn't understand, and their basic message was keep it simple, stupid. And so we changed our format, developed another survey, and sent it out to a smaller sample and then we found out that a few more changes needed to be changed -- needed to be made. And after that, we sent the survey out to slightly over 800 people, and 604 of them returned them. And then when we got the 604, we sent it back to them. In our original letter we told them we'd like them to fill it out twice. So about 80 percent of the 604 people who filled it out the first time, filled it out the second time. Now, why do we have them fill it out twice? And that's where a little bit of the science part comes in. And the first time they fill it out, what we do is we try to see if people answer the questions the same way. It would be a little strange if they answered the question -- each set of questions differently. So we kind of held our breath and found out that the reliability of people filling it out the same way was real high, and that's called internal consistency. Then the reason we sent it out the second time is that we wanted to see if they would answer the questions the same after a period of four to six weeks, and that's called test/retest reliability or test stability. Now, the reason I'm going into a little detail here is because sometimes you see people who come up with a question. They think it's a great idea. They send out the question and then they get a bunch of responses and then they publish the results. And the problem with doing research that way is that you don't know if those kinds of questions have any reliability or validity. So we were pretty determined to make sure that this was a reliable test that would hold up over time and it has done that. Now, the question of validity is are you testing what you think you're testing? And in order to do that, we had to include in our original survey some standard tests that are out there in use and see if what we were asking was the same kind of thing that they were asking or whether it was different. So included in our survey were questions out of the PIP, the Personal Independence Profile that Peg Nosek developed; the SF-36 which is sort of the standard measure of quality of life; the Duke Social Support Scale, reintegration to normal living; and the ERFSS instrument which is a CDC product. So what we wanted to do was look and see how our questions related to their questions, and it turns out that some of our questions -- all of our questions on choice correlate very highly with Peg Nosek's Personal Independence Profile, Part 3, the correlation was about .98. So that would mean that our test -- that part of our test was testing the same thing that her test is testing and, technically, that's called convergent validity. Then we looked at our measure versus the SF-36, and we found out that the SF-36 and our test don't test the same thing. And that's probably because the SF-36 talks about how far can you walk? How many steps can you climb? And a lot of stuff about walking, and most of our people were not walking, so the SF-36 is probably not a very good test for measuring people who use mobility devices. However, the research industry still uses the SF-36 as a standard measure for quality of life. So that's a warning, don't use the SF-36, please. The results of the study have provided us with a great deal of information on what people with mobility impairments do, how much choice they have and how satisfied they are doing the activity; but the most important finding we have that's relevant to this discussion is that the results show that assistive technology is used to engage in a whole broadband of different types of activities. The problem we had was, though, that we did not ask which specific activities and which specific environments they were done in. Our questions were more broadly based in terms of the general activity and the general environments. So we decided we need to know more about the device and where people go with their devices. If we can find out the different kinds of mobility devices that are associated with people participating in more activities that they think are important to do, increase their choices, and that they get a higher level of satisfaction in doing the activities, then we'll be able to describe the type of devices that might provide the best shot at helping people with similar impairments find and select the best devices for attaining full participation. But to find the best devices, we also need to find out how people who currently use the device feel about their devices. So we looked into the literature and we found several existing measures that we thought could help. The Piyez is a measure developed in Canada by Jeff Jutay, and it looks at the consumer's level of self-confidence, adaptability and competence. Another measure we found was The Quest, developed in Montreal, which asked questions about the device, whether it's comfortable, durable, and the services associated with the device, repairs, emergency backup, rental and so forth. We added some more questions about devices and service availability that were not at the high end of The Quest based on my experience and our former -- our earlier work and other people that work with us at the Washington University who have mobility impairments and our associates at Paraquad. So we added some questions there, and then we added a couple of other sections, one of which was -- we wanted to try to untangle this question about PAS and AT. I wanted to find out what activity PAS was used most in and what activities assistive technology was most used in and what was the overlaps. So we included a PAS set of questions. We also wanted to find out where people who used mobility devices go in their communities and how they perceive barriers and facilitators. To do this, we combined our measures of participation and environment that we developed under the CDC grant into a survey called Consumer Perceptions of Recent Activity. So now you have the outline of how we came out with all of these surveys and how the questions evolved, and how we tried to take our questions and put them into the world of science and doing that by assuring that they are reliable and valid. And one other point I should make is that another part of science is to try to make your study relevant to the content that the people -- who are people with disabilities -- are interested in. All of our questions and directions to research were guided by our original 143 people in our focus groups and our staff of which a number are mobility device users. I think we established the content validity, too. >> HELEN: Dr. Gray, would you like to take a few moments now as a break and see if anyone has any questions? >> DAVID: We could do that, or I could finish the talk by going over where we are and what we found out was the -- was the study that -- that was the past part, and part of where we are currently, and then have some results I could talk about from the study we're doing now. >> HELEN: Okay, that's fine. Keep going. Very interesting. >> DAVID: Okay, so what we did is we applied for and were awarded a grant from NIDRR to try to put these ideas we had about developing an assessment tool together and then doing that same kind of reliability city study that we did with our original study from CDC, but now much more targeted toward assistive technology. And what we told them we would do is we would have four groups, instead of dividing it on diagnostic categories, we found from our earlier study that if you divide the world into people who use different types of devices, you probably can explain more by doing it that way than by telling someone that they're a C 5/6 quadriplegic or a person who has had polio. There is a lot of variability within spinal cord injury and polio and CP and so forth. So what we did is we divided it into power wheelchair users, manual wheelchair users, scooter users, and people who use canes, crutches and walkers. And the first part of our study is that we interviewed with this big survey, 35 power users, 31 manuals, 27 scooter users and 37 canes, crutches and walker users. About 41 percent were male, 50 percent were female. The racial breakout was 62 percent white, 26 black, African American, was about 5 percent Asian and then 4 percent Hispanic and then about 5 percent Other, so an interesting distribution of race. And then we found out -- then in our sample, 72 percent had attended college or graduated from college. So it was a relatively educated group; and the other thing we found is that 32 percent had income less than 10,000, and 24 -- 23 percent had incomes over 50,000. So, you know, sometimes you get criticized for not having a random sample. I've always kind of found that a little weird that how can you do a random sample of a rare event, and people with mobility devices are sort of a rare event. But the way we defend ourself is we say we're doing purposeful sampling, so we collect people for a purpose; and the purpose is to try to find out what they know about their assistive technology and what they don't know. What they like about it and what they don't like about it and where they use it. Where we are right now is we know some things about what people who use mobility devices know about the services they get for their assistive technology. And some of the -- we have like 30 or 40 slides that we can talk about, but I picked out four or five that we can highlight here. And one of the things that people know that their DME people do or their rehab people do is that they will accept funding and they know all about funding; but here is an amazing thing, for the power wheelchair users and the scooter users, 38 percent to 39 percent of them don't get any training when they buy their device. And less than 50 percent of any of the groups had a trial period where they could take a look at it and see how it worked and try it out. Turnaround time was pretty slow. A lot of them didn't have emergency services provided, and less than 30 percent of them had website availability or Internet response. So there is some work for the DME people and the rehab folks to do. But here is a really interesting thing we found out: That a lot of the consumers don't even know what's available from their suppliers. For example, power wheelchair users -- only 43 percent of them knew that there was emergency services available. It was less than that for scooter users and more, but manual wheelchair users, almost 60 percent of them knew there were emergency services. People weren't aware about their -- of the turnaround time before they could get their wheelchair back. They didn't know if there was a loaner provided. 60 percent didn't know if there was a trial period or not, and only 20 percent of them reported that there was -- that their DME provided training. The next one is on what was most dissatisfying about their device or their service, and the one that is the most dissatisfied -- that reported the most dissatisfaction was the follow-up. Once you buy it and you're out of there, it looks like they don't respond to your needs. Surprisingly, repairs and services were not complained about as much as we thought. They were less than 15 percent in most cases. Now, you probably don't remember this from way back there, but The Quest, which was a standard way of looking at how folks with disabilities look at their devices -- it turns out that comfort, durability and safety and ease of use were the top four device features that were reported by all of the device users, that is power, manuals, scooters, canes, crutches and walkers. Surprisingly, the effectiveness of the device was lower than reported as important by less than 30 percent of the respondents. And one of the more amazing findings that we came up with is a lot of you who are in manual chairs have heard that don't ever go to a power chair. You know, your body will go to heck if you do, and you need to have that exercise and you're basically -- they're telling you you are a lower form of human being if you go to a power chair. And since I use a power chair, I can say that. Anyhow, there is this test called a Piyez, and it is supposed to be -- and it is a measure of your -- a person's response to their use of their device. And they're divided into three major components, adaptability, competence and self-esteem. Guess what? Power wheelchair users and scooters report that they are more -- that using their device makes them more adaptable, that they feel more competent, and they have higher self-esteem than their contemporaries who use manual wheelchairs or canes, crutches and walkers. So the bottom line of this thing is that we found out so far that consumers aren't always satisfied with the service, but what's even more disturbing is they don't even know what services that they are entitled to get or that their DME has, and that different devices have different psychosocial responses. So what I personally found out from this study is that some of the questions that I've had over the last 27 years are not just questions for David Gray, they are questions that are for a whole bunch of people who use devices. And just to finish this off, we should tell you that the study is done in a community center where we have a wheelchair skills course and we -- when we do these assessments of people, we try to see what kind of skill levels they have in operating their wheelchairs and where they do them and all of that. And our next phase is going to be making recommendations to them for different kinds of devices that they may not know about, and the services that they should be aware of when they go to buy a new device. And one last thing is that my colleague, Kerry Morgan, who uses -- who has used a scooter, canes, crutches and walkers and a manual wheelchair -- I'm trying to get her in a power chair -- can tell you a little bit more about some of the activities we're doing, and then we'll open it up for questions. Kerry. >> KERRY: Something that -- as Dr. Gray just shared all these results with you, we're finding out that people don't know a lot of things. They don't know what new technology is out there. They don't know a lot about what their vendors, manufacturers and suppliers are offering them as far as services go. So we're trying to educate people, do interventions, not just personally at our center, but also community-based. One of the big things that we just did was had an assistive technology consumers fair, and this is pretty big in the St. Louis area, because most of the assistive technology fairs are offered on the coast, California, New Jersey, there is one in Chicago, but there is really nothing offered in this area for people who use assistive technology. So we tried to have not only the latest and greatest assistive technology at the conference, but -- at the fair, but we also tried to have services about how to get that assistive technology funded, and different local organizations and different services for people who use assistive technology at the fair as well. Another thing that we do at our center is we have monthly -- what we call -- assistive technology vendor demonstrations so people actually -- vendors or suppliers bring in equipment and sort of run like an in-service for consumers to see what the latest technology is. And it may be not even just wheelchairs, but may be upgrades to wheelchairs or computer devices or augmentive communication devices. What else am I missing, Dr. Gray? >> DAVID: Oh, we've had focus groups with independent living center individuals to help us figure out how we can educate people with disabilities in assistive technology and to get educated from them as to what questions should -- we should be asking. In fact, all those activities that Kerry was talking about help us stay pretty well abreast of what questions might need to be asked in the next round of survey development. Okay, so that's what we've done, Helen. And if you want to open it up for questions, that's great with us. >> HELEN: Okay, great. Thank you Dr. Gray. You've just done a wonderful presentation and really taken us through your research program and how it started with that grassroots approach that we talked about in previous webcasts, with some personal experience and your personal questions and how that's been developed and refined. You've used -- you've used stakeholder interviews, you have used focus groups and then surveys. I mean, it's a great research program to take us through probably most of the steps that we're going to be talking about during this year about research. Mark, do we have any E-mail questions? >> MARK: Yeah, I've got a couple, and one is general and the other is more detailed. I'd like to give them both at the same time because I think one can answer the other. The first one is are there any improvements or updates to the Canadian forearm crutch? It is hard to carry anything while using them because your hands are always occupied. And the question that came in after that was, is there an adaptive technology resource guide that can be accessed on the Internet and how can it be accessed? >> DAVID: Okay, the Canadian crutch thing -- excellent question, but we have not studied that. We will see if we can get an answer. >> KERRY: There are versions I know that are a lot more lightweight, but it still doesn't solve the problem of uniform crutches being able to get your hands free. >> DAVID: You've used them, right, Kerry? >> KERRY: Yeah, I know of several companies that make a lighter weight one because they tend to be very heavy. >> DAVID: Okay, and then the resource guide? >> MARK: Can that be accessed on the Internet and how can it be accessed? >> DAVID: We're working on that and we have a piece of it, right? Now, the University of Pittsburgh and Georgia Tech have online wheelchair and other devices catalogs, and a number of the features they have, and a lot of information like where you can get them, but I don't think that's what the caller was really interested in, I don't think. And able as there. But what we're developing is we're trying to develop a system for how these devices are used in the context of the environment. Do you want to say anything more about that, Kerry? >> KERRY: What our overall goal is to possibly develop something that could be kind of like a consumer's guide or consumer's best buy to assistive technology, so that we -- as people buying assistive technology, we can research it and see what other people thought who used it and see not only the consumer's report from it, but also how did it rate? Is it reliable? That type of thing. So kind of have like an engineering rating on it as well. >> MARK: Would it be like a database? >> KERRY: We were envisioning something that could be accessed through the web and you could pull up searches for the technology you were interested in looking at. >> DAVID: Do you want to say anything about accessing the Internet? >> KERRY: On our website for our research, we do have different links that are good assistive technology resources and do kind of have something called Accessing Your World where we review some products and some different technologies that help out whether it's in transportation or in your house or just different wheelchair options. I want to say it isn't very exhaustive right now, but it is a resource. >> DAVID: Any of the links we are talking about today, we will follow up with the folks at ILRU and post resources to these that we're naming. Additionally, it will glue on to the CRC site at the University of Iowa and we'll also ask a couple of colleagues who work more directly with assistive technology if they have any other recommendations in addition to the ones that were mentioned on the web. >> HELEN: Any other questions, Mark, from our E-mail participants? >> MARK: I have one more about cost. It has to do with the emergency and repair policy that you were talking about. Is this information not provided by the manufacturer, and does cost of the device have any way to do with services provided, for instance, a cheaper chair provides less of a warranty, et cetera? >> DAVID: Boy, that's a good question. You would think the more expensive the chair, the more likely it is that you would get training in it, that you would get backups, that you would get all these things. Part of that has to do with the DME supplier, part of it has to do with how you purchase it. If you buy it over the web, you're probably not going to get a whole lot of follow-up. If you buy it from a DME supplier who's got folks that can show you how to use it and have a wheelchair skills course and are there and have been there for awhile, more likely to get good service. Unfortunately, the way our insurance and reimbursement systems go, a lot of the backup, followup training and other good things that you might think would go along with purchasing a high item device, cost device, aren't included. They're not paid for by third party payers. So now as to the question of whether there are emergency hints in your manufacturer's handbook, yeah, there are just like there are when you buy a car. Most American men don't seem to read those. It would be good if the DME people would spend a little time with you in explaining how to reset your power wheelchair when the battery fails, if there is a reset button. Unfortunately, if there is a reset button, it's usually out of reach for someone who is quadriplegic. Most of the DME people I've dealt with don't spend the time telling you that, nor training you in minor repairs or your personal assistant or your family. Those are all things that would be nice. So far as I know, any place that I've been hasn't provided those, and I don't know anybody that has gotten a DME person to do those, but we'd like to hear about that. That's part of this consumer report thing that we'd like to develop. It would be nice if we could find places that actually do provide those services and follow up. >> MARK: Well, would you receive a lot of information from the consumers themselves to put in that book or whatever it is, the consumer report, is that how you'll get your knowledge on it? >> DAVID: Yeah. We're running 240 people through this assessment thing, and part of it is we're finding out what their DME people provide them or don't provide them and what they think about their device. So that will be part of the record. And people can -- it will be on the web. It will take another couple of years to get all that together though. What would be great is if we could have gotten another award that would have allowed us to do this on a broader scope. Hint, hint. >> MARK: Right. >> DAVID: Whine, whine. Does that answer that one, Mark? >> MARK: It seems pretty comprehensive to me. >> DAVID: Mark, did you want to say anything about the cool A. T. fair we had? >> MARK: Well, I tell you, when I got back down here to Houston, I told everybody about it and it's something that I think we should have down here in Houston. I don't know why more people don't have it. It was just -- you know, as far as assistive technology goes, especially for those who don't fully use the devices that are always there, there were all these, you know, inventions and practical solutions to things that, you know, I never would have thought of. And the good part about it is that at the same time, I explained this to you earlier, that we were also having that home and garden show, for all you Trading Spaces officionados, Bernie (Inaudible) was there, and a lot of those people walked into the assistive technology, and I think we were a good initiation for them to see what was going on in there and to see what was available and the people who were in there, and it was a -- I think a well turned out and very informative fair. And I think it's something that I would encourage a lot of cities to have like you said. >> DAVID: Yeah, I think some of the vendors have said that -- it was an interesting kind of event because they saw so many people with disabilities. Usually when you have those fairs, you see a lot of therapists or DME vendors, but you don't see as many people with disabilities wandering around and finding out and finding out what's there and asking good questions, and the DME people were learning from those of us who are consumers. So that's sort of a way of trying to get back at the DME and the manufacturers to let them know what the problems are with some of this equipment. >> MARK: Direct contact. >> HELEN: Dr. Gray, I'm wondering if you could talk a little bit about your recruitment of participants and involvement in the community and probably -- I know in my mind that's all related to the relevance of the research. If you could talk a little bit about how you negotiated all of that. >> DAVID: Well, anybody that rolls by my window, I just rush out there and grab them, okay. >> HELEN: That would be that purposeful sampling. >> DAVID: And I go to Cardinal baseball games and I recruit there. I recruit at the symphony. I recruit anywhere, that's true, but we also have a somewhat systemized way of doing it. We have all these different charitable organizations, like the MS Society and United Cerebral Palsy and veterans -- Paralyzed Veterans of America and a whole bunch of those folks, and the polio group, it used to be called Jenny, and we've established good relationships with them and they will take our pleas and put them in their quarterly or weekly or monthly newspapers and then people who are interested will write in to us and on some occasions, like the MS society or polio group will -- for a small price -- mail out to their constituency our plea for study participants, and then Paraquad helps us out a lot. The DME people have even helped us in recruiting. Kerry, do you want to talk any more about the sources that we use? >> KERRY: And just independent living centers, just try to go through -- not only our local independent living center, Paraquad, but to reach out to some of the rural areas by using surrounding independent living centers. I think you hit all the other ones. >> DAVID: Oh, yeah -- T. V., Kerry is sort of a star of the local T. V. market. She's an athlete and she has a lot of neat devices, so they did a T. V. story about her and that always helps. And when we opened our enabling mobility center, that got some T. V. press. It's been in the local university's magazines. You know, the bottom line is it's not so easy to get people involved in studying issues, and we use whatever we can, but I will say this, even though some of our surveys have taken up to two, two and a half hours to fill out, we have rarely heard any complaints about it, and it's not because we pay them $10,000 either. We pay them anywhere from 20 to $50 to fill these things out, but the reaction has been generally one that I would have, which is, you know, I can spend more than two hours waiting in a doctor's office or I spent much more than that waiting to go into an MRI machine or at the ER room and gotten very little benefit out of some of those waits, whereas what the questions we're asking people really have something to do with their lives, and that's the good side of that. The down side is I need to figure out what we can do with that information to make lives better for people with disabilities and that's why I still try to get involved to some degree in social policy because I have this maybe delusional working hypothesis that if we team up with real data that showed that people with maybe more expensive devices, and better features could go off and do more, they would be healthier in terms of the number of days they spend in hospitals and drugs they take, legal drugs they take, and in terms of their satisfaction with their life it would be much higher. Now, the unfortunate thing from my point of view is that the film seems to be driving the market for reimbursement. So some of these studies that I've done and other people have done, and I hope others that are listening will do, need to replace the general concept that reimbursement for medical necessity only has to deal with bowel care, bladder, dressing yourself, feeding yourself, and those kinds of activities of daily living. We need to expand it into more meaningful activities of life, and that's really going to be a societal change. I don't know that we can drive it all by empirical evidence from the kinds of studies we do, but I don't think it can hurt, and having worked on the -- worked as a presidential appointee and worked at NIH, I've seen how others have used the results from scientific studies to improve funding for biomedical research and improve funding for different types of social policies. So that's my long term goal in this is to try to change social policies so that we can become full participants in American society. I know that sounds a little grandiose, but I figure somebody has got to be a dreamer and why not me. >> HELEN: Dr. Gray, can you talk a little bit about -- up you've just touched on it now this idea of research and policy and the connection between the two at least for some of those individuals out there who are just beginning with this idea of research? >> DAVID: Yeah, when I was in -- I grew up in Michigan, in the Fifth District of Michigan which was Gerald Ford's district, and President Ford used to come to our high school and teach us civics before he was president, and I got to -- real interested in how the policies and legislation that was being enacted had an effect on the lives of the every day American citizen. And that was well before I broke my neck. And after I broke my neck and talked to people in the political arena, they were amazed that the federal government, state government, and the local government and the charities did not provide me and my family with one penny unless my wife divorced me, we sold the house, I became indigent. In which case, United Way, Social Security Disability Income, SSI, food stamps, Meals on Wheels, allowances for living in an apartment complex and so forth would roll my way, all I had to do was declare myself totally incompetent and incapable of any substantial gainful employment; which I decided I wouldn't do. And found out that that phrase was part of the Social Security approach to how this country should treat people with disabilities. And then as I started studying the situation, I found out that really that evolved from the FDR approach for how you -- how society should take care of the elderly and the widows and the children of injured soldiers and stuff. And even before that, it went way back to -- as far back as recorded history and societies would tend to take care of people as long as those people were declared somehow incompetent to compete or to live normal life. Sometimes they would institutionalize us, sometimes they would sterilize us and so on and so forth. So it took people like the Kennedys and FDR and other folks to come along and change social policy. They -- based just on their own experience that people who are mentally retarded don't necessarily have to live out on a farm away from everybody else, that they can be integrated to some degree, in society and hopefully to the full degree. And I learned from the Fords who helped get a program to provide personal assistant services to people who were employed, regardless of their income. From Senator Durenberger, that if I had an idea, I better have some data to back it up. From the Department of Health and Human Services and NIH, if you go into a meeting with the congressional representatives that pity pleas don't do very well unless it's in a congressional hearing. Beyond the mother's crying or the very sad story of a person who broke his neck, which gets the attention of people and maybe in Christopher Reeves' case would get money for one specific disability, maybe there are some parts of social policy that applied to people with all different kind of disabilities, like transportation, housing, employment, that kind of cuts across whatever the cause or etiology is but how do you get the data that shows that a policy will have a positive effect on a large group of people or a specific piece of social legislation will have a large effect on a few people. If and when you have the power of the NIH and you have a lot of data, you can do a lot. You can get -- you can get legislators to pass a billion -- billions of dollars of support for kidney dialysis or for -- you can get insurance companies to do quadruple heart transplants or you can get the federal government and insurance companies to pay for 45,000-dollar prosthetic devices. So what I've taken from those lessons is that you either find a hero, a champion, to get up there in front of Congress and get specific amounts of money for specific problems, or you try to get a group of people like we did with the Americans with Disabilities Act that have common problems and go as a group, but one of the things that we didn't have when I was active in the ADA issue was we didn't have a lot of data that what we were doing could be useful. So what I think happened there was instead of a programmatic bill, we wound up with a civil rights bill because it didn't cost anything, and we got the civil rights bill to apply to a whole area of people with disabilities, but there was no sciences back then. Now, what's missing from my view is we need to have some kind of disability administration that can provide the funds and resources and service delivery that will back up the ADA. Because the DA really doesn't have any dollars with it. So if I were to go to Congress with that, they might say, well, how much money for what? And what kind of results, just like we're facing with some of our grant funding agencies. Prove to me that what you're doing is worthwhile, and that's why I think science is important, and I think we need to make sure we're doing valid and reliable science because if we're not, people are going to rip apart the results that we present. >> MARK: Amen. >> HELEN: I think you raised a really important issue about the balance between research and advocacy and the need for both as you've shown in your own research program, the need for both sort of a qualitative approach and a quantitative approach. The qualitative approach in my mind puts a face on the numbers and the numbers alone can be compelling, but sometimes those stories behind it really bring it into focus. >> DAVID: Yeah, you need them both. No doubt. >> HELEN: Okay, Mark, do we have any more questions from our audience? >> MARK: None have come in. I think we've covered as many as I have. >> HELEN: All right then. I think we will probably wrap it up for today, and Dr. Gray, I want to thank you. This has been a very informative talk. I really enjoyed hearing about your own research project and I think woven within there you've done an excellent job of teaching our audience about different research terms and about developing research questions, as well as some other issues that they will face as they go on with their own research projects. So thank you very much. >> DAVID: You're welcome. Thank you all. Bye-bye. >> MARK: Thank you.