Improving Health Care for Persons With Disabilities: What is Needed? Presenter: Dr. Gloria Krahn. >> LAUREL: Good afternoon. This is Laurel Richards with ILRU in Houston and welcoming you to today's webcast. We have an excellent program set up for today and I just want to give you a brief overview before we get into the program. Right now, you're connected to -- you're on our ILRU web page where we have the information for today's presentation. We have bios and overviews and handouts in two formats, links to the actual presentation via either RealPlayer or Windows Media Player and you're using one of those and through that you're both hearing the audio and you're seeing the captioning that's being done in realtime. Of course if you don't need the captioning, you can minimize that part of it if you wish. Now, this is a live delivery. And so if you have any kind of problems, you need to call ILRU's technical assistance line. And the number is for both voice and TTY is (713)520-0232. 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And just a quick word for those of you somewhere in the future who are listening to this webcast from our archives and we get quite a few listeners that way. If you have any problem at all, call that same telephone number, we're still here. Whether it's next month or next year or whatever, just go ahead and call back on the 713 number if you have any problems. And you're going to notice that instead of realtime captioning appearing on your Media Player, we've converted that to text so we also have a text of today's program. And it's available to you as well. So today's program is improving health care for persons with disabilities. What is needed? And for people with disabilities, historically access to health care is problematic to say -- I guest that's the minimum one can say and we've got plenty of anecdotal evidence documenting whatever barriers exist and you and I, we all have stories of our own or other people have these ridiculous problems and troubles people have not just getting good health care services, just even just -- not even just getting into the door, but working with staff who -- you know, you can see them look at us and wonder how on earth am I going to get blood from that person or get that person in the machine to do whatever. And that doesn't have anything to do with some of the other problems such as getting a referral to a specialist when you're covered by a managed care program. There are just lots of issues which need to be addressed and even though we have anecdotal evidence, what our friends at the Oregon health and -- sciences university have documented some of the problems and as we all know, it's a documentation that we need in order to make our case even more clear to not just researchers and policymakers, but if we have to get down to it and working with attorneys if it comes to that. So today's presenter is Gloria Krahn. She's with the or began health and science university in Portland. She's the direct tour of the Oregon Institute on Disability and Development, an associate professor of pediatrics and public health and preventive medicine. The associate director for academic affairs of child development and rehab center, and of course the director of the Rehabilitation Research & Training Center on health, wellness and disability. Gloria, welcome to today's program. We're awfully glad to have you and we're extremely interested in what your findings were. So please take it. >> DR. KRAHN:Thank you and welcome to this webcast. I'm delighted to be on with you today and as Laurel said, I'll be talking about work that we've been doing with many other partners through the Rehabilitation Research & Training Center on health and wellness for people with longs term disabilities. This work is funded by the National Institute on Disability and Rehabilitation Research and Phil Beatty is our project officer for this and a very capable person he is. >> LAUREL: He sure is. >> DR. KRAHN: and Laurel indicated, we've been doing some work and parts of what we wanted to do today is report back on the survey that we actually conducted with ILRU through this exact venue in trying to find out what are the experiences that people are having who have disabilities and are trying to access health care. And I'll just add that the topic for today's talk is really what is needed now. I know that there are a lot of issues that are needed into the future and having grown up in a country that had universal health care, I'm much more familiar with what can be, but given the current context, what I really want to do is to people about what can be done right now given the current context that we're in. I am going to be -- for those of you who are interested, I did post a PowerPoint and I see that it's presented in two different formats and I will be going through that. So if you choose, you can click along with me and I will be letting you know when I'm changing slides. So I'm actually going to go to the next one that says about us. And this is really the mission statement for the RRTC on health and wellness, are irrelevant tended to contribute to the reduction of health disparities for persons with disabilities through an integrated program of research, training, technical assistance and dissemination. And this is dissemination. And you'll see the website listed for our organization. On the next slide, you'll see I've got an overview of this webcast and as I already said, the intent is to focus on now and less into the future, although we can talk about that a little bit towards the end. The background issues -- and I'll talk about those in a little bit -- are really that people with disabilities do experience poorer health than people without disabilities. If you look at general population data, that's some of the background and much of the work that we're doing is working to disentangle why that is and where people can move in and make a difference in that. The next thing that I want to talk about is this online survey that we conducted through ILRU and then that reverberated through multiple systems asking people what were their experiences and difficulties that they had. I'll also describe two surveys that -- one survey we've conducted with physicians nationally and one survey that a colleague of mine in Oregon has conducted and that will just help info us from a physician perspective the problem that physicians experience in providing health care for people with mobility impairment in particular and then we're also completing a literature review and that is pretty much done and I'll be drawing on some of those findings really just to illustrate more what the commonalities of information are so striking that the literature helps provide some depth to it, but much of what people have told us on the online survey is what gets repeated elsewhere. Then I'm going to come to a summary of barriers by -- barriers experienced by individuals, by health care providers, by clinics and by health care systems and talk about some sample -- what we're calling facilitators. These are the begins to some solutions and they might give you ideas for where you might want to take things and then we'll have a time for question and answer. Now, I have said previously with Laurel and Dawn that if there are questions that you have where I'm using a term that you're not familiar with or for some other reason you need clarity about something I said right now, please send that in and, if possible, they'll interrupt me and get that to me. But if you have comments that you want to make about your own examples or you might want to argue with a perspective that I'm taking, and I would really welcome that, but that kind of dialogue I see us holding until the end of the fairly brief presentation. And if you're like me, when you got a question, I need to write it down or else it's going to be with me and I won't be able to hear. So please feel free to do that. Send it in and then relax and stay with me for the rest of the presentation. So I'm going to shift to the next slide and one of the things I really want to talk about, it may be obvious to all of you on the line, but it's not obvious to everybody, is that health and disability are different. And this is something that I think has been sort of confused in the past when people thought, well, if you have a disability, of course your health would be poorer and part of what we are working is not only to challenge that understanding or that assumption, but to try to tease apart some of why it is that people with disabilities might report having poorer health. But we start from an assumption that health is different from disability and health -- I'm using what's pretty much the World Health Organization definition of health as a complete state of physical, social and mental well-being and not merely the absence of disease. And for disability, and this again comes from the World Health Organization or the international classification of functioning, where we think of disability as a reduction in function or a need for assistance. So it comes back to that conclusion that a person with a disability is able to be healthy. And yet I'm shifting to the next slide and yet we know that there are health disparities of people with disabilities, and from many different studies, we see that people who self-report having a disability also report having poorer health, using less clinical preventive services and that are things like having ma'am oh grams or Pap smears, having a flu shot and so that people with disabilities self-report using those services less and also report more trouble or more difficulty in accessing needed health services. All of that comes in to creating part of this difference or this disparity between the health of people with and without disabilities. If you go to the next slide, this lists out five contributors to health or health status that has been used repeatedly in the literature and in particular literature from public health that looks at large populations and then tries to determine what are those factors that contribute to the health of large groups of people. And a researcher who has been doing this for decades has done a nice summary of that to say that health status -- at least for the general population, and we would believe that to be true for people with disabilities as well -- you can kind of group factors into five different areas. One is health care access and that's what we'll focus on today. A second is individual healthy behaviors, and these are lifestyle things that we choose or sometimes get pushed into practicing healthy or unhealthy behaviors. A third is environment, and we know that's very important, especially access for people with a range of different disabilities. Genetics is a fourth contributor to your health status, so some of us are just prewired to have certain conditions, and others are not. And the fifth area is social circumstances, where you live and how you live is also a contributor. But as I said, we're going to focus on health care access today. This is just a background for understanding at least how I understand our approach to thinking about health and how to improve health. This next slide comes from somebody who has worked -- Henry and he is now with Mathematica, they did an extensive overview of health care with people with disabilities and it has its six characteristics or elements of an effective care system. I'm just going to read them off briefly, and we won't get into them in much detail, but they are probably elements that you would recognize that you would say, yes, this is what I would like in a good care system. One is to have consumer choice. I want to have some choices about where I go and whom I see. A second is for a system to have the capacity to identify persons with disabilities in their system, and that would be so that if it's a clinic and they know that a person with a mobility impairment is going to take longer in an appointment, that the clinic is already set up to recognize that and accommodate that. The third is that there is attention to prevention and intervention for secondary conditions. And often the concern is that the care is for the disability and is less for the person, and so those preventive services that other people have like mammograms, Pap smears, checks for colorectal cancer, knows things don't happen at the same rates for people who have a disability as for people without. The fourth characteristic is that care be interdisciplinary and comprehensive. So that people have access to a range of providers and this covers all of the needs I might have. A sixth is that there is accessible urgent care so that I can get care immediately if that's what I need and that care is easily available to me. And then the final characteristic is that service is integrated and that it's really managed, that I don't have to be the only one sort of coordinating and managing my care, but that somebody else is also doing that. So those are the elements that have been identified by others as an effective care system. I'm going to shift to the next slide and tell you just the procedures that we use to pull together information to come up with the factors I'm going to be summarizing at the end. The first that I'll talk about is the online survey and I'll give you more detail about that. The second are the physician surveys and then the third is a review of published studies and both national and international reports. So let me move on to the next slide and talk about the purpose of the online survey of people with disabilities. We conducted this to identify those aspects of health care and health care settings that are really important to people with disabilities. Other people could decide what they think are important, but until you ask the user of a service or a patient I guess in this setting, you don't really know what those aspects that are important to the participants and the second thing we wanted to find out was what are the barriers to obtaining health care that people with disabilities experience? We actually used this to help develop a tool that measures physical -- well, physical and attitudinal access within clinic settings, but we built the survey even bigger than just looking at that. So the next slide tells you about the method. We developed a pretty short survey instrument. It listed aspects of health care and then asked everybody who got the survey to list how important or to rate how important each one of those aspects was to them on a five point scale. We also asked if there was a time in the last 12 months when you did not get needed health care, and if that had been your experience then we asked you to choose reasons from a list of reasons and then rank them in order of importance. I think one could five again. So the thing that was most important in not getting health care, you would rank No. 1. The thing second most important as a number 2. Moving to the next slide, so as I said, it was an online survey. It meant that we were only tapping into people who have Internet access and who are probably pretty well connected to the disability community. We sent a participation request via E-mail with a survey link to a national disability list serve such as ILRU and we know that it reverberated around multiple list serves and people who received it were encouraged to forward the message on to others who might be interested. Initially, we had to file this with our institutional review board which is the human participation protection committee that every research institute or university operates and in that we have to say how many -- how many people we estimate will participate. We had hoped for 200 and so that was the number that we submitted and then posted the survey. And on the next slide, it shows that within two weeks we had 943 responses and we actually had to pull the survey much faster than we had expected, but its was clear that both the network system of the disability community is very strong, active and immediate and that this is an important issue for a lot of people. So who answered that survey? That's what I get to talking on, on the next slide. The average age of the respondent was 45 years, although there was quite a range. I think people as young as teenagers and if I remember correctly, people into their 80's. The average age, however, being 45. About two-thirds were women, one-third were men. About two-thirds lived in urban areas or cities. About one-third rural areas, and that's probably thoroughly close to what the distribution of the population is in the country. We were probably more -- obviously more heavy on females than on males. The survey was primarily white, 91 percent of the respondents indicated that they were white or nonHispanic, 97 percent -- oh 96 percent rather -- and that they were respondents from around the country. The types of disabilities that people experienced and this is by self-report is reflected on the next slide. This will show you that, again, we were probably hitting more people with mobility impairment. 41 percent of respondents said they did experience mobility disability. 40 percent reported multiple disabilities. 8 percent of people had hearing problems or were deaf. 4 percent had vision problems. 3 percent reported cognitive or intellectual problems and 5 percent reported other problems. So, again, probably a little more female and a little more tilted towards people with mobility impairment and we know already that these are people who have access to Internet. So it's a different slice of the general population again. The next slide shows the responses to that very big question of what was important for good health care? And things that people reported as very important, not at all surprising is that health insurance is at the top of the list. 95 percent of people reported that health insurance was very important. However, some of the other findings are also very interesting and we might not have expected them as coming out so strongly. The second most important thing and almost as high is provider attitude. And that was at 89 percent, followed by provider knowledge at 81 percent. And we know that people often complain that their provider doesn't know their condition or doesn't understand them. And I would see some of that as being provider knowledge, but the fact that people are feeling that their providers are either less comfortable or less willing to work with them, that's a very high response rate. The attitudes -- and that's for the provider -- typically a physicians, but could be a nurse practitioner. Attitudes of clinic staff was also up there at 76 percent. This would be more likely to be front desk staff, receptionist when ire checking in, people who might walk you back or to a lab facility or an examining room. And then responses dropped off after that as very important, location of clinic was at 38 percent. So people aren't finding clinics necessarily all that convenient. And then other aids and services at 31 percent. The next slide just gives a little bit more detail about the insurance issues and it's a reminder that 95 percent of respondents indicated that insurance is a big -- is a very important factor for them. So some of the things that came up were finding a provider who will accept my insurance. I know at least in our state it can be very difficult to find a provider who will accept Medicaid reimbursement as one example, or perhaps you're in a plan where the number of providers are limited and within that smaller group it's hard to find somebody who is willing to accept a person with my insurance or -- yeah, with my insurance. The second issue is that care wasn't covered by insurance. So this probably relates to benefit packages that if what I need is extensive physical therapy and all I get are five visits a week -- a year rather -- then that's care that's not covered by my insurance. Or that there are other costs such as a co--pay that aren't covered by insurance and that are just too expensive in order for me to really use the services, but the cost of the copay or something else not covered by insurance -- and this could include things like durable medical equipment that's not covered and, therefore, I'm finding that my insurance is really inadequate. What's listed below on just some of those findings that came out of physicians surveys that parallel these issues and this is a reminder that physicians find insurance reimbursements very difficult to deal with as well. The physicians, 90 percent of them report that -- oh, I'm sorry, one is just information that 90 percent of people with disabilities do have some form of insurance but physicians will report that one of their biggest concerns, and we'll see that a little more clearly a little later, is reimbursement rates. That is a very big factor for physicians, and especially if what's required is a longer appointment and the reimbursement rates do not cover that. And as somebody who serves as an administrator in a center who also has a clinical program, I'm acutely aware of how much pressure our health care providers are under in order to be able to cover costs. And we never do. We're always running in the red and having to subsidize clinical care through other activities. So from a provider's perspective, the reality of reimbursements and the amount of time that they can take for appointments is an incredible pressure for them. Moving to the next issue around providers with the right attitude and the right knowledge that people repeatedly report is hard to find a provider who knows enough about my disability or my other issues in order to work with me in a long term way. What physicians have reported that's fairly comparable is they will acknowledge they have limited understanding and are not so comfortable in dealing with people with physical disabilities. I'm stating surveys that were asking about physical disability. So that providers are also acknowledging they are not as comfortable with that. Physicians also report that they know they would need additional education and resources and that's a whole other topic in terms of people who are providing services who acknowledge that they would need additional education and at the same time they will indicate that they have difficulty picking that up through continuing education because of other priorities and other surveys from medical school and dental school curricula indicate that there is not a willingness to expand curricula to include more teaching on this. Just again because of the pressures form everything that needs to get included currently in curricula. But that's not an answer, is it? The next thing are the physical barriers to good care. So what people with disabilities report having biggest problems with are transportation in getting to a health care provider, what the physicians will Kay is that they also experience trouble maneuvering assistive devices in exam rooms. So clearly some physical barriers going on at multiple levels in terms of accessing health care. The next slide talks about those unmet health care needs. So you'll remember this was the second big question that we asked on the survey. In the past 12 months, did you not get health care that you needed and 34 percent of people said there was a time in the last year when they didn't get the health care that they needed. The next slide shows the reasons for that, and the most important reasons for not getting needed health care are that it costs too much. That to get what I would have needed, I couldn't have afforded that without having severely compromised other parts of what I need to do in order to just continue on with my life. Another reason was not being able to get an appointment or not being able to get an appointment in a timely fashion. Another reason of not getting health care that probably relates to cost is that it's not covered by insurance and, therefore, I wasn't able to get it. The fourth biggest reason was that I couldn't provide -- find a provider who understands or was willing to treat my disability, and we hear that repeatedly. Again, as Laurel was talking about anecdotally, we hear that anecdotally. It's hard to call around and find somebody who will accept my insurance and within that pool of people will they be also willing to treat my disability. And finally, transportation or that the provider's office was too far away from me stands out as the fifth big reason why people did not pursue getting health care. I'm going to talk now very quickly about these two physician surveys that we conducted. One was in 2003 and we were interested in finding out -- we had a lot of information from a number of national surveys around what people with disabilities report as not happening in terms of health care, and at that time we were focusing more on what we would call as wellness. Things that included clinical preventive services, like flu shots, Pap smears, mammograms, checks for diabetes, a range of procedures like that but it also included was a physician willing to provide counseling around healthier lifestyles, for example. Did they ask about trees levels. So we had a fairly lengthy questionnaire that we sent to physicians across the country. We surveyed both family practice physicians and internal medicine physicians. And we got a response rate back of about 35 percent. And we were asking in particular how their care of people -- of their general patient population went and then asked them to respond to those very same questions for patients who had physical disabilities, and then we get examples such as cerebral palsy, spinal cord injury, a number of other examples. So that was one survey conducted in 2003. The second survey being conducted by colleagues in our center is a physician specifically, but was based on the earlier survey and this time they focused on health care more broadly for persons with physical disabilities, but the sample is restricted to Oregon. So those are the two surveys. The next slide shows just a comparison of the barriers that physicians reported in caring for adults with physical disabilities. And so the first barrier that was the biggest one reported both in the survey on wellness practices as well as health care was time that physicians report having trouble finding enough time to provide adequate care and what wasn't said explicitly, but it's that within the busy schedule of needing to maintain a clinical practice, being able to have the time to provide those services was their biggest problem. The second one is very similar to what people with disabilities are reporting, and that's insurance. So that in the wellness survey, 54 percent of the physicians reported that insurance didn't cover any of those services or didn't cover enough of those services. And for just general health care, physicians reported 36 percent of the time that this was a problem. The question about understanding or feeling comfortable with patients with physical disabilities was reported 54 percent of the time as a problem. And in health care for Oregon physicians and issues around care coordination or the time it takes to coordinate as being a problem with care, providing health care, was also a big problem at 48 percent. In both surveys people responded to concerns about communication. I'm not certain they knew how best to communicate or that they could understand patients with disabilities. For the wellness survey that was only 10 percent, but for the providing health care survey, that was reported at 42 percent of the time. This was a survey that we sponsored jointly with the United Cerebral Palsy of Oregon and southwest Washington, and the respondents, the physicians might have been thinking more specifically about people with cerebral palsy, hard to know, but that's one way of understanding that difference. What is interesting on the wellness survey is that we asked about to what extent lack of patient interest in wellness issues was a barrier for the physicians? And 49 percent of them thought that their patients were not interested in issues of wellness. If that's the case, if people would see that as being the case, then that's one thing, but if this is a misperception, which I believe it is, on the part of physicians that as a person with a physical disability, they might think I was not interested in wellness information. It might be up to me to have to let them know I really do want to know how to lose weight or isn't it time for my mammogram? Lack of educational materials was reported by about a third of those of the groups and then difficulties in dealing with patients who have mental health issues or intellectual challenges was reported by about a quarter of each of those samples. And then finally, the group that's providing health care, about a quarter of them reported or 23 percent reported that managing multiple medications was a problem for them. So that's the perspective of the primary barriers that physicians are reporting. The next slide shows what physicians are asking in terms of resources in order to treat or provide better care for their patients with disabilities. The things that they want most are written materials such as resource guides got a 42 percent endorsement. Written educational materials got a 40 percent endorsement, and then what's called practice guidelines, so if I know that a person is coming in who has downs syndrome, these are the kinds of things I should be checking at this particular age or this particular visit. Well, if I know I'm working with a woman who has cerebral palsy and she is interested in getting pregnant, then it would be nice to have practice guidelines for how I should provide care for her. So clearly 37 percent of the physicians were saying that would be helpful to me. Then another 30 percent, perhaps it's the same 37 percent said that having a telephone or E-mail hotline, if I could talk with some expert who could give me immediate consultation or what I should now do, that would be very helpful. Then in terms of training that would happen in another setting probably, about 28 percent said that topical courses that would provide me with continuing medical education credit, which as a physician I need to get a certain number of credits, that would be an interest to me. References on equipment would be of interest at 28 percent. About 25 percent said that they would find coding guidelines -- that is a guideline that lets me know how to code for my billing processes. If I knew the best ways to code how to code the procedures that I performed today in order to maximize billing, that would be helpful to me. And we have just seen an example -- I think the CDC is distributing -- for some aspects of care that has just come out. And then there was less interest in having computer-based continuing education at 17 percent or mini fellowship trainings at fourteen percent. Give me material that I can have available -- especially available when I want it or when I am in a situation where I need it. The next slide talks just very quickly around a literature review. And as I said, we've been conducting a literature review and we're almost finished summarizing those findings. We looked at articles that were addressing health care barriers and facilitators to accessing health care for people with all types of disabilities and we're probably going to be able to sort that out by nature of disability. We looked at literature that was published in the preceding five years. I think we actually went from 2001 to 2006. And we restricted it to information that was relevant to the U.S. health care system. There are some marvelous stuff that's being done in other countries, but because of how our health care system operates, primarily how it's financed, a lot of those strategies don't work as well in this country. And those findings, as you'll see in the next slide, are currently being summarized and they were very similar to the online survey and the physicians survey, but they did give some added examples. The next slide just shows the covers of two of the reports of a number of national reports and international reports that we looked at. And these are both surgeon general reports. Thank goodness we've had attention to this issue twice in this past decade, in 2002 under surgeon general Thatcher, the closing the gap, a national blueprint to improve the health of persons with mental retardation came out and in 2005 the call to action to improve the health and wellness of persons with disabilities also came out. And under a Democratic administration, the other under a Republican administration and similarities across those two reports. What I'm going to move now to is in essence a checklist that summarizes the barriers and the facilitators and I'm going to talk about these at a person level, a provider level, a health care clinic level and at a systems level. Now, a lot of the barriers that are systems level certainly are felt at a person level. So if I'm a person, and I have poor insurance, that is a real problem for me. Unfortunately, the solution for that is pretty hard for me to tackle by myself. It's almost something that I have to tackle at a systems level. So you'll see that I've grouped these things more close to home in that sense; but that I hope I've done justice to all of the issues that do come up. So if we look at issues that are being reported that are barriers for persons with disabilities and families, some of these become more intimate than some of what I've been talking about before. Some of the things though that have come out both through the literature and -- I guess came largely through the literature search -- are problems in understanding my health in the context of having a disability. And 134 some of that is people not recognizing if I have a disability, I can still be healthy. How do I handle my health, how do I handle my diet if I have cerebral palsy and have oral motor issues. How do I manage my health in the come text of having a disability? Or how do I get enough physical activity if I have spinal cord injury and find that the kinds of activities that many of my peers might engage in aren't available to me. So that's understanding my health in the context of disability. Another big issue that comes up as a barrier is knowing what services I really do need. So I've been surprised in some early training we've been doing around -- training with and for people with physical disabilities around getting clinical preventive services, people not always knowing what, yes, I'm a woman and I'm about the age of 50. I really should be getting my mammograms on a regular basis. A third factor that comes up is just plain fear. I find it difficult to engage with some of -- difficult to engage with the health care system or I'm worried about my health and about what these new are in my body, and I almost don't want to go in and get down that whole line of finding out that there might be something else that's seriously an issue with me. So we've been hearing the issue of fear. It's a factor I think with everyone in accessing health care. It may be at a higher rate for folks who have already had not such pleasant experiences with the health care system because of a disability. Another issue that comes up as a barrier are the communication skills to advocate for what I need. It's not always easy to figure out how to communicate clearly with my health care physician, or if I feel like I'm being put down for me to stay with it and stay respectful, but stay persistent in saying, but what I really do need or we've got to find another way to figure this one out. That no isn't an adequate answer for me. And then a final barrier that came out fairly frequently are either that I don't have enough family support in order to get the health care that I need, maybe it's hard to get somebody to drive me in and as often as I need to go, or that I have other family responsibilities. I have child care responsibilities and I can't find somebody to come in and take care of my kids if what I need to do is follow up with an appointment or go for therapy. Let me move then to the next slide. I think some of these factors, these barriers are being better understood and there are a number of ways of addressing them that are coming forward. What I'm going to cite are just some emerging, what I think of as sample facilitators or new strategies that are just being started or tried out that we think hold promise, but we don't know any of that for sure. One of those strategies is public awareness, and I think that a number of us are seeing more public awareness campaigns that include people with disabilities just as a part of a group of people who are demonstrating that they are going in for a procedure or that they are talking about health care issues. So just the awareness of the general public is intended to change attitude. One of the specific campaigns that is just getting rolled out now by the CDC in selected cities is the right to know about breast cancer. And some of us who have seen some of the prereview materials know that a number of leaders in the disabilities field are featured in this campaign. June Kailes being one of them, so it's going to be a poster, flyer, series of public announcement ads that talk about the need for -- or the right for women with physical disabilities to know about getting breast cancer exams and the different processes to go through. So if you haven't seen this already, hopefully a number of you will be seeing this roll out in communities near you in the next short while. The second area -- so that's just public awareness and it's wanting to say, hey, pay attention. And everybody, both a person with a disability, friend, family member, but also health care provider, clinic nurse, mammogram technician, please know that women with physical disabilities also need to have mammograms and get ready for that. So that's public awareness. The second major strategy that we are seeing are some training programs. In the general literature, these are often called patient activation training. They are programs that are intended to give the person, in this case, person with disability, the needed information and communication skills in order to advocate for what it is that they need, rather than waiting for somebody to say, gee, I think at this check you're probably due for your mammogram. It would be you saying, hey, dock, I think it's been awhile. Can you check my record? I think I'm probably due at this point or maybe I would know that. One of those curricula was developed by June Isaacson Kailes and has been pilot -- or has been tested through a program at the national rehabilitation hospital, that's called SHIELDS. I won't remember what that acronym stands for, but we can get information on that if people are interested in that. It's a wonderful workbook, and we're actually using that as the core for an intervention that we're just launching starting this fall in very specifically up here in Oregon. Our intervention is called PATHS and I won't remember what that stands for either, but it relates to accessing health services for women with physical disabilities again. And this one is based on SHIELDS and just has a little more specific information attached for your community, both information like where are there accessible mammograms and what are some bus routes and what do we know about any organizations that will help offset costs for some of the clinical preventive exams. I know that there are some other training programs that have been tested. Out of calf there has been work as well and I hear about these periodically and these training programs are intended at the individual or the family or supporter level in order to increase knowledge and advocacy skills. And then a third activity that's going on are manuals. They are not training materials so much, but they are books that allow you to find out more if you are so inclined. One of the best is you're enrollee benefit book. If you do have insurance coverage, your insurer will have a benefit book available and those are actually a great source of information. I've also seen what I'm calling health care organizers. Many of you probably keep some of those, but it can be a hard copy binder. It can be an electronic file, but it's a number of groups have put together these organizers that just help you keep track of your own health care records in a more systematic way, an easier way for you to find. And there are some excellent examples of those out. So those were barriers -- the key barriers for people with disabilities and some of the sample facilitators that are currently being developed and used now. We're going to move next, next slide, to barriers to health care providers. This is largely physicians, you'll remember, but could also be nurse practitioners, could be other kinds of therapists as well. So if you'll remember that the big issue here has been reimbursement rates. A second big issue appears to be recognizing that people with disabilities can be healthy and you all are probably more into what we've been calling this paradigm shift, into that newer way of recognizing that difference. Health care providers are not always fair, and so you know they are when they treat you like a person and when they are very involved in all aspects of your care. And some ways you know they are not when they are focusing more on what your disability is as being the reason for providing care and that's the exclusive reason for providing care. A third barrier is that physicians report is feeling comfortable in providing care to patients with disabilities and when you're the person who feels like you're supposed to be in charge and in the know, it can be disquieting to feel that you don't know how to deal with this, and yet we know that physicians who are more practiced and experienced have figured out strategies to say, I'm not exactly sure what the best way is to deal with this for you, can you help me with this or do you know what works best for you? That kind of an approach that is also something that I think we as receivers or participants in the health care process can ask for or can actually teach our providers. And then the final barrier seems to be knowledge about the general needs of the person in the context of disability, as well as the specific needs. Let me move on then to some of the sample facilitators. So in terms of reimbursement, some of the billing code strategies are ways that clinics have been looking for for awhile in figuring out, okay, what are some different ways that allow me to bill so I can actually cover costs if I see a person for half an hour rather than only for seven or eight minutes. And figuring out those strategies in order to bill and it's not false billing at all. It's just full billing in that sense and as I said, I think I've just seen a billing code sheet coming out from the CDC around women's issues. There are some other resources. For example, information on disabilities and related health conditions that come from some of the international sources, and one of them -- one of the one that is I have seen has been developed for general practitioners in Australia by a person named nick Lennox and that material is called CHAPS. I don't remember what that stands for, but it's a nice checklist of the kinds of things that a general practitioner should be thinking about if he sees a person with a particular kind of disability. So if you're coming in with cerebral palsy, there would be some things that a general practitioner should be thinking about. If you're coming in with Downs syndrome, there might be some conditions that I'm more likely to experience and therefore practitioners should be more mindful about that. We're also seeing some interesting materials coming out on what I think are disability etiquette. And in a sense it's how can I be respectful in this interaction between the person that I'm providing care to and who I am as a physician. And it's some of the figuring out how to work with the person rather than working on the person. In terms of training, as I said, there is a reluctance for including more training in the curricula. We've seen that there was a recent survey that was reported on last fall at the disability forum by the folks from special olympics. So it was Matt and Steve were the coauthors of the report that had surveyed all medical school deans and all dental school deans in the country and, again, finding what we found in previous surveys or in the literature in previous surveys that schools recognized that there is not very much teaching happening in providing care for people with disabilities, but so far still not much interest in including more information either. Which makes me a little bit pessimistic that the solution for a lot of the problems is just to develop a curriculum. I do think that there are some other strategies and we probably will need curricula, but I'm not sure that at this point they're going to be adopted to readily. There is need for continuing education and figuring out how to provide that so it also gives continuing medical education, those are the units and the credits that count for keeping a license, if I'm a physician. Those are important. And then finally, some of the facilitators are consultation and mentoring, and you'll remember that in one of the surveys, the notion of having an E-mail or a telephone hotline was a resource that physicians would want and we have seen some examples of that. In my own center we serve specialty clinical services for children with special health care needs and disabilities and have a network of community clinics that we provide technical assistance and consultation to. And one of the things they have found valuable is both having training on specific issues, but then having E-mail and hotline consultation so that if a child in a rural community in Oregon presents with some significant problems that may or may not relate to their cerebral palsy, for example, the physician who is out there in that rural community has a very immediate access to an expert who can talk him or her through the care in that particular visit. So those are some of the sample facilitators that are coming out that we see as holding good promise. At the clinic level, some of the barriers are listed on the next slide. And these are all very familiar, I'm sure, to all of you. One is inaccessible facilities, not being able to get through the door or get up the stairs. Another is inaccessible equipment and there is a RRTC on accessible medical equipment in southern calf. Another area is systems procedures that don't support care of persons with disabilities. So when scheduling doesn't really allow enough time or you don't have any of your handouts in alternate formats, those kinds of things. And then finally, this notion of training and coordination of clinic care staff so that it's not a very integrated process for providing care. Those are some of the barriers that really do get identified for clinics. Some of the sample facilitators are -- we're seeing a number of emerging checklists around accessibility checklists. We're just at the RRTC we're just completing preliminary testing and validation of a checklist. It's the outpatient health clinic utilization profile. I think that's what this OHCUP refers to. And it's ADA-based and looking at usability of clinics in terms of being accessible. We know that there are some other checklists that are also in development or are being used, but starting to let clinics -- start to go identify for clinics the very particular ways in which their clinic is not accessible or is not usable. Other facilitators is information on accessible equipment and I think the RRTC is doing that work in California is coming out with some good materials on that. We've also seen some good stuff coming out from the CDC and I know at one time they had a short period of time where they were actually funding tables that would lower for different clinics around the country and people really just needed to apply for that. That period has come and gone, but we know that other groups are very attentive to figuring out how to address the issue of accessible equipment. In addition to that, we have some efforts at figuring out what is needed at a clinic level in order to support care of persons with disabilities. And we're just partnering with some clinics in Oregon to figure out what for their particular clinic would be needed in order for them to provide better care for their patients with physical disabilities. That's called the CLIPS program and we're just unrolling that one as well. We're expecting things as diverse as training for staff, helping them prioritize and set up their coding systems or filing systems so that they have a better way of allowing for enough time for a visit if that's what they need. Perhaps building in an advisory group that will give them ongoing support and part of our process is figuring out what for each clinic is that they identify that they need and we'll be summarizing that as guidelines for future clinics and we're also providing training on how to coordinate clinic staff around improved care. At the systems level, let me talk about some of the -- ah, looks like I missed the barriers at the systems level, but what we know about them are knows that I've already talked about are health insurance coverage, inadequate training for providers, and so some of the sample facilitators that we know about are the need for health insurance reform. We know that that needs to happen in this country, movies like sick will are just helping to underline that and we'll need to see where that goes in the next decade. We do see that there are some samples of good progress being made, sometimes through litigation and sometimes more voluntarily. Examples of that, again, are showing up in California where Kaiser Permanente has been working with a number of disability groups to develop procedures for improvement in their services, Inland Empire is an insurance group that is really a model for being very proactive in figuring out what is needed to provide better services for people with disabilities. We also know that transportation is a problem. So we know that we need improved transportation and there are probably communities across the country who are addressing that. Easter Seals has certainly taken that on in Easter Seals programs. And then as I mentioned before, the surgeon general reports have finally brought highlight to these issues as do the CDC healthy people 2010 chapter 10 so I'm optimistic that with visibility comes the demand for change and I think groups like ILRU are very helpful in helping move that, the need for visibility forward, and that it's encouraging to see Senator Harkins' wellness bill. I don't know that many people are optimistic that it's going to pass this time, but it's certainly raising the issue of visibility and I think that's what needs to happen because we will hopefully see some big changes coming in the next five or so years. That's it for the presentation and let's open it up for questions. >> LAUREL: Dawn, do we have questions? >> DAWN: Yeah, we have a few. I have -- I'll just go ahead and read this. She's got a number of questions here so you can kind of pick it apart. Did you obtain sufficient data to make any observations on a regional or state level basis? Were all respondents adults with disabilities? Or was there any means to indicate reporting as a caregiver? Have you considered doing a similar survey of parents, caregivers for children with disabilities? In the physicians surveys, was there any data concerning types of specialties? And she sends another question, it's can you provide additional information about resources to obtain health care organizers? >> LAUREL: Well, Gloria -- >> DR. KRAHN: All right, I'm taking notes. Yeah, this is excellent. >> DAWN: Do you need me to reread something? >> DR. KRAHN: I think I got them, but if I miss something let me know. Did we have enough data to be able to talk about regional differences? And I'm going to refer to the online survey first. And, no, we didn't. And we actually didn't -- we weren't sampling across the country and so we really were not able to make any inferences from that perspective. For the physicians survey, we were very specific that we were sampling across four regions of the country. And you know what's interesting is that I don't know that we ever cut that data at a regional level and we can sure look at that. It sounds like this listener thinks that there might be some reg name differences. We know there are for other issues. So that's a really interesting question and a good observation. And I can go back and we can have a look to see whether we did find any regional differences. When I actually had done the analyses and just never written them up that way but I can go back and look. With respect to the were all respondents adults or were there caregivers? I believe they were all adults with disabilities. I don't think we had an option for caregivers, but I can go back to that as well and post the answer to that online. And then was there a similar survey of caregivers for children -- it would be an interesting one to go to. There are some marvelous parent groups that have been parents of children with disabilities or special health needs that have been looking at a range of these similar kinds of issues. So we have not gone back to the child or the pediatric issues, but could -- I would be more inclined to look at the literature because I think there is more information out there for children with disabilities and special health care needs than there may be for health care access barriers for adults. I could be wrong, but if I were looking for information, that's where I would go and obviously groups like family voices and -- oh, I'm not going to remember the name of the group that we've actually partnered with -- but there are a couple of other national family groups that have been looking at those issues. In terms of the physician, were we asking for specialties? No, we were actually looking for nonspecialists at this point. Our focus has been more on what we sometimes call primary care or routine health care. I know that there are issues around accessing specialty care, but part of our concern has been that sometimes there is so much focus on the more specialized aspects of the disability that the broader and the primary, the routine health care for persons with disabilities is not attended to. So in both the wellness survey and I believe for the Oregon specific physician survey, I believe they were more general practitioners. I did not conduct the Oregon survey so I can follow up and actually post information on that. And then resources -- yes, I can certainly post some resources on the health organizers. Some of the best that I have come across have come from some of the family groups who have extensive medical records that they are working to organize. And one of the people that I work with closely in my office is a quick resource on all of these. So I will look into that and post these by the end of the week. Any other questions or did that address these questions sufficiently for the caller who sent those in or the listener who sent those in? >> DAWN: I hope so. Here is another one: How are physician-requested resources, for example, resource guides and hot lines being dealt with? Are such resources currently available or in the works? Will organizations like independent living centers have an opportunity to collaborate on and disseminate this material once it is developed? >> LAUREL: There you go. >> DR. KRAHN: Excellent question. I don't know all of the resources that are being developed. I know about some and there may not be as many. Well, I don't know about as many physician resources, but they are probably coming out much more than we know. Some of the ones that I cited I know are coming from international authors. And what do I know that's coming out -- well, let me back up. We did another survey, a survey of the literature looking for standards of care and guidelines for example, and so some of them are out there that are specific by condition. So, for example -- but they are only emerging from my understanding. So as part of this other paper that we were trying to pull together, we both looked at the literature, at reports, and then I was also consulting with physicians that I know both locally and across the country who specialize in different disability types. So I know that there is something good out on downs syndrome. I know there is guidelines emerging for Spina Bifida and there may be something else out for cerebral palsy. I'm sorry, I'm going through my memory right now. So it looks like there are guidelines that are coming out that are more specific to a particular disability and a little less to issues that might be cross-disability. From my understanding, there has probably been very little input on the part of persons with disabilities from that patient perspective into those guidelines and that they really are addressing more if you see a person with downs syndrome, check for congenital heart conditions, check for hypothyroid functioning, check for other kinds very things like that. I don't know that there are, but the person I would go to to ask, and I can send her an E-mail would be June Kailes. She's always my resource for a range of issues like -- just like that. If any other listener knows about resources like that, and I think the specific request was for the kinds of resources that physicians are asking for, who knows what might be out there and who knows whether people from independent living centers, for example, have had input into any of those. So that's what I know in response to that question. Any other questions, Dawn? >> DAWN: Yeah, I was going to say June is a terrific resource. >> DR. KRAHN: Isn't she? >> DAWN: We did get a note back from the lady with the previous questions and she said to say thank you, that you did answer her questions. >> DR. KRAHN: Good. Good. >> DAWN: I have one last one, and it's kind of a long one. If the survey that you used did not include any minorities, Hispanic or black, isn't or is it not reality that the survey is not a true representation of the disabled community? I do not understand why the Oregon Health and Science University would use any sample that did not include the representation of any subpopulation. Is it true that minorities with disabilities face each even a more difficult time finding adequate medical providers, let alone be able to answer any survey honestly about how they view the adequacy of the medical care? Moreover, most minorities with disabilities cannot afford to even provide the basic necessities, let alone a computer, so it is my view that the use of online surveys should not be used. >> DR. KRAHN: I would agree with the listener that I think there are some real problems with an online survey. For certainly all of those reasons, I think it is -- it's a real limitation on the findings and I think what we also -- what we probably tend to draw when we do that kind of a survey is people who are -- who have more resources, who have a higher education and who are very plugged in to the disability community issues and so I intended to indicate that I recognize those as limitations. So that said, I don't -- and I don't think that the survey is represent representative. So I can be totally clear about that, but that said I don't think that it still doesn't give us some important information as to what some issues are, but will not indicate what all the issues are and it won't say that these are issues for all of the population. So I certainly agree on that. And the reason people do them is that they are a very fast way to collect information from across the country. And the down side is you don't really know who you're not getting information from. So I fully, fully agree with the listener who is saying that. I would agree that -- also that I think people who speak another language, people who come from a different culture definitely experience difficulty accessing health care in pretty much the standard format that most health care is currently delivered in. I think that there are some health care providers and clinics that specialize in providing care that is more a tuned to the values, the language and the beliefs of some cultures than others and my guess is that this caller -- I hope that this caller is familiar with some of those places. I know about some of them in our communities, and I would hope that there are some others like that in other communities. I would definitely agree that there are more barriers and certainly if an issue of undocumented status is a part of the background, that is decidedly a real barrier to accessing health care and feeling okay about walking in the clinic door and asking for assistance. So I absolutely agree and then I would still say I think that we can find some information around this. What doesn't come up obviously is the need for interpreters into multiple languages, but even more fundamentally is providers who understand and know the culture and how to approach a particular issue that might come up within the context of that culture, within the context of that disability. So it is like another layer of understanding that's needed in order to provide true adequate health care. >> LAUREL: I would agree with that, Gloria, and regarding the online survey, we've done some considerable thinking about it since we worked with you all on that project. And we've come -- we believe that you can do effective online surveying, particularly if you work with and in partnership with centers for independent living and can identify centers that have a fairly large service constituency with certain populations you may be trying to target, be that people of certain ethnicity or certain -- whose language -- primary language isn't English or people who are deaf or people living in rural areas or people who are older. My mother doesn't like older, but you know, seniors. People who are very young -- you could identify the characteristics that you'd like to survey and then you could work with centers to recruit among their constituents the folks you might need. So I think we can do better now than we have before, but there are ways to do that kind of surveying because it is as you say very fast and very cost efficient. >> DR. KRAHN: It's a really good (inaudible) and part of it is trying to get information about general population may not tell you much about any person and that's always the problem. So if part of the issue is really wanting to figure out how to provide best care for migrant, Hispanic population or migrant Latino population, which is one of the groups in Oregon, than we really need to be looking at that community and those available service providers. We will not have that reflected in a national dataset. Even if 20 percent of the U.S. population is of a different ethnic or heritage background, that 20 percent can kind of get washed out in the numbers by the other 80 percent. So if part of what we really want to know is how to provide adequate health care, we'd probably need to be talking about adequate health care for whom? And then starting to develop our answers around that. So that's a very good point and the listener has really sort of raised that as a good point of awareness. >> LAUREL: Yeah. Good. Dawn? >> DAWN: There is another thank you here and she says my thanks to Dr. Krahn for her response in an extremely informative presentation and that's all we have right now. >> LAUREL: I would agree with that, Gloria. >> DR. KRAHN: Well, good. You know, I think if that's where we're at, I think we can call it a day. Thank you so much for participating. I will follow up on the questions and the additional resources or information that I said I would put together and I will work with ILRU to have that posted so that anybody who wants to go back to that would have that available. >> LAUREL: Oh, that's just great. And we'll wait -- we'll work with you on that. And if something occurs to some of our listeners, a question that they thought of after we close, if they'd like to forward that to Dawn or to us, we can run that past you and if there is a response, you know, we'll post that as well. >> DR. KRAHN: That would be wonderful. I appreciate the opportunity ongoing die log. So any input or offers of are ones we would be most interested in talking about further. >> LAUREL: Good. >> DR. KRAHN: Thank you. And thank you all for listening today. >> LAUREL: Good. Then we'll close out. I want to just point out a couple of things. One is we've listed on the web page where you all are with the handouts, et cetera. We've listed a number of webcasts that we've done in the recent past that has to do with -- or relate to health and wellness type issues. So we urge you just to review those and see if any might be of interest to you. They are a range of subjects, but they are excellent webcasts. Also we have other webcasts archived from ADA to center and SILC operations to reaching out to under served populations, just a whole range. Now, an important thing I'd like to ask you is we have a link on this same page for evaluations. We would very much welcome any kind of feedback you can give us, not just on the presentation, but also on the mechanics of the web delivery, navigation, ease of use and more than anything we'd like to know ways you would recommend for us to improve the process. And then in closing we need to say -- talk a little bit just a minute about the support that we receive for these webcasts and it comes from -- we have a marvelous Title II in the Rehab Act which one of its six purposes, one is to ensure widespread distribution in usable formats of practical information generated by projects funded by NIDRR. And they won't be information, it says, to rehab professionals, but also to people with disabilities and others including the general public. And what we do here at ILRU is we focus on the people with disabilities and the others, and in particular we focus on the nonresearchers, particularly in the independent living field, but in related fields such as rehab counseling and so on who can take these findings and then put them to use in their day to day delivery of services and activities. And we know that's -- the research is intended for that. And it's important to us to make sure that it is delivered to the people who really are the ultimate beneficiaries and that's the people that centers work with, that rehab counselors and even the providers in my field, my home organization is TIRR, medical rehab hospital facility. We have upcoming webcasts next week and we urge you to join us. One will be on August 13, and it's pain management and there will be a presentation by Marty Grabois who is the department head of physical medicine and rehabilitation at Baylor College of Medicine. And he'll present with Lex Frieden who is the director of ILRU and has his hand in many other things. And then later that week on Friday we have a professional -- a presentation on professional preparation and participation of culturally diverse rehabilitation professionals and state federal agencies. That's a marquee title, isn't it? And that's by the rehabilitation institute on under represented populations. So we invite you to join us for those and meanwhile we're going to close today and so on behalf of our rehab cast team who includes Rob Dickehuth with the Center for Collaborative and Interaction Technologies at Baylor College of Medicine, Marie Bryant who is our realtime captioner and both of them -- both Rob and Marie are excellent, plus our excellent team at ILRU including Marj Gordon, Sharon Finney, Marissa Demaya, Maria del Bosque, Tanjauna Arnold and Dawn Heinsohn. And thank you for joining us and we hope to see you next week. Goodbye.