Good afternoon or good morning to all of you depending on where you might be calling from, I am happy to have you join us in this session today. Today is our 11th session out of this year''s twelve session series, so we are winding down to the end of the year today. And we are happy to be able to welcome our speaker, June Issacson Kailes who is going to be speaking with us today related to the issues of accessibility to medical equipment. For those of you that are new to the program, you have joined the Audio Conference Series offered by the Regional Disability and Business Technical Assistance Centers, which are 10 regional centers funded by the U.S. Department of Education, National Institute on Disability Rehabilitation Research, and we have been in existence for, this will be going on our 15th year and we have affiliates from across the country many of you who are joining us today. The program for your information is a 90-minute session, so hopefully you are set to be able to join us for that period of time today. For those of you who need access, we do provide this program simultaneously real-time captioned on the internet. If you need to, or are interested in accessing that technology, you can do that by going to www.adagreatlakes - all one word - .org. And if you have been there before, you will notice a new look on the site. There is a link on the front page to real-time streaming text. If you click on that link and follow the instructions you will be able to hook in. There is a transcript that will be developed as part of this program which will be edited and posted to our website within 5 business days after the end of this session, as well as a digital recording of the program that will be posted to our web site. So you have many opportunities to go back and revisit this information if you need to. And if you haven''t, please visit our archives of the sessions that have been offered for the past the past 8 years which are also on our website and have many valuable topics and information which have been offered in the past if you are interested in those. As I said, this is our August session, and we are being joined today by our speaker June Issacson Kailes. If you have questions on the Americans with Disabilities Act or you have questions following today''s session that you did not get answered, please be sure to contact your Americans with Disabilities Act (ADA) and Accessible Information Technology (IT) center, or otherwise known as Disability and Business Technical Assistance Centers, sometimes we struggle with our identity and folks knowing who we are. I have to be -- and folks knowing who we are, but we are there to assist you on compliance and your rights under the Americans with Disabilities Act and we can be contacted at 800-949-4232 and that is both voice and TTY. So without further ado, I am going to go ahead and introduce our speaker today. As I said, it is June Issacson Kailes who is joining us, is a disability policy consultant. She has been working in the area of disability rights, and is known both nationally and internationally for the work that she has done. She is also one of the original national leaders in our independent living movement in this country. She is currently serving as an Adjunct Associate Professor and Associate Director of the Center for Disability Issues and Health Professions at the Western University of Health Sciences in Pomona, California. She has done many things in her career, including being both involved on the boards of the National Council of Independent Living as well as California Foundation of Independent Living. She was appointed by President Clinton on to the U.S. Access Board where she served from 1995 to 2003, and she was involved extensively in accessibility requirements in a built environment. In transit and telecommunications and a number of other areas, and she brings to us lots of experience in the area of emergency preparedness and a lot of experience and expertise in the area that we are speaking with today, specifically with health, wellness and aging with disabilities. She has a number of publications, if you have visited our website and accessed her bio on our website; you also link to her web site where a lot of her publications and resources are also highlighted there. She will talk a little bit today and give you some more background on her involvement with the Rehab Engineering Research Center on accessible medical instrumentation and some of the other work that she has been doing in this area that brings to her, her expertise and knowledge on this topic. So without further ado and going-forward, because I know that she has lots to tell you about who and what she has been doing and what is going I am to go ahead and turn over today''s session to June.
Thank you, Robin. It is good to be here, I will just get going. I bet that all of you have fond memories about medical procedures and the instructions that you often got like just Hop up. Look here. Listen up. Don''t breathe. Stay still. Just a few of the many kind of instructions that for some people the ability to comply with those are very difficult, depending on one''s disability. So on the slides, you have my contact information in case some of the questions that you have don''t get answered today, feel free to e-mail me or give me a call. As Robin said, the hat I am wearing today is that of Associate Director, the Center for Disability Issues and the Health Professions at Western University in Pomona, California. And our center works to enhance the health of people with disabilities through coordinated policy, training, research and dissemination activities. The center was actually founded in 1998 and focuses on improving the capabilities of healthcare providers to meet the needs of folks with disabilities through the integration of disability literacy and competency content into curriculums of students at pre and post grad levels as well as continuing medical education experiences. We also work at increasing the number of qualified people with disabilities who actually pursue careers in the health professions, and we spend a lot of time supporting people with disabilities and becoming more vocal and active and powerful advocates in their own healthcare, and related today we also conduct research on a variety of community-based health education and prevention issues in terms of health and disabilities. One of the slides you got there kind of shows the different organizations that we work with. We do, do a lot of consulting with healthcare organizations in making more healthcare more inclusive for people with disabilities, including managed care groups like Pfizer and a lot of different managed care organizations in California. What follows are some other slides that represent some of our health related publications. One here is "Making Preventative Healthcare Work: a Kit for People with Physical Disabilities." That is a kit that I wrote in coordination with the Center for Disability Research at the National Rehab Hospital in Washington. And this is currently being tested as a beta version and hopefully next year will be made available to any of you by the internet who would like to use that kit. And some of the other slide pictures, some of the other publications that I have also worked on, emergency health information and Robin talked about aging with disability publications and another one, "Being a Savvy Healthcare Consumer: Your Life May Depend on It." And there is some disaster related publications for people with disabilities and last year we did a teleconference on planning accessible meetings and that is what this picture on one of the slides and one of the more popular products is the "Emergency Evacuation Preparedness Guide for People with Disabilities." And that, of course, came out shortly after 9/11 we worked on that project. So my objective today for this call is to review some of the survey results from the national consumer needs assessment and to review some of the strategies we found useful and successful in getting accessible equipment into the offices of healthcare providers. I''d like to also review some of the existing resources out there of accessible equipment, exam tables and scales, and then I''d really like to hear from you regarding strategies that have worked in your environment. What has worked? So our audience in terms of the research is a variety of health providers, plans, educators, people with disabilities, advocates, manufactures, vendors, sales representatives, and, of course, policy makers. Our intended outcomes related to our work on accessible medical equipment is to basically reduce the costly health disparities among people with disabilities, by removing barriers to healthcare services and to create new accessibility standards for accessible medical equipment. I think most of you listening really know that there has been inadequate attention to ensuring ADA compliance in healthcare that it is often overlooked and yet it is a very significant contributor to many of the documented health disparities experienced by many of us with disabilities. And we have to always remember that compliance does not only involve attention of physical communication and program access, but it also means access to medical equipment. So the first study we did at the RERC was entitled "Accessibility and Usability of Medical Instrumentation for People with Disabilities", a national survey, several articles have been submitted for publication and I will give you some websites later where you can access some of those articles. The RERC and the study was funded by NIDRR. And I am going to highlight some of the many studies findings, this was a big survey there were 457 people who completed part or all of the survey and there were actually 408 surveys that provided usable data. All 50 states were represented and some of the interesting demographics of the participants were -- about 34% male and 66% female. The age range clustered between 25 and 64. 90% of the participants were Caucasian, 4% Afro-American, 2% Native American and 4% other. And as we have experienced with any kind of online survey, the educational level of this group is somewhat higher than is typical, and that is that in a sense a rather highly educated group. 18% completed high school. 21% had an associate degree or vocational trade degree. 30% had a bachelor''s degree, and 28% had a graduate or professional degree. So that is an issue with online surveys. In terms of employment, about 44% were unemployed, 20% were employed part time, and 36% were employed full time. 55% of the group made -- had over, had 5 to 6 medical visits per year, and in terms of their use of the assistive technology, 37% used canes, crutches or walkers, 45% used manual wheelchairs, 44% used hover wheelchairs, 65% eyeglasses, 8% hearing aids and then there was another 18% of a variety of users of assistive technology. One of the big areas we looked at was access to exam tables. This involved the table itself as well as any assistance that people were able to receive in terms of transferring on to, positioning and staying on the table. This was a huge area of difficulty, and to just hop up instruction as you all know doesn''t work for a whole lot of people. And the RERC is working on some new approaches, but the cartoon you see in the slide is not the kind of approach that we are endorsing which is the trampoline in the middle of the floor, so the wheelchair user can just indeed hop up. We found all kinds of very dramatic input that we received on this survey; one woman with cerebral palsy was lifted on to the exam table by untrained security guards. And one participant said in the survey, "You know, it takes a village to get me on the table." Exam chairs are impossible to get in and out of, and said I have to have my husband or office worker help me. I delayed visits to doctor''s offices because it takes a village to get me on and off the table, which means I don''t go for corrective care appointments. And this response was representative of a number of different responses we have read as well as other responses we have gotten in focus groups. So the next slide is a cartoon, and it makes fun of a very serious issue, which people are not getting the transfer assistance they need when they need help either getting on a more accessible table or inaccessible table, one that is not high/ low. So this is just a little toon that says, you know, we finally got that transfer assistance you requested and basically, it is showing us a nurse with a forklift which is you know a sad commentary on the current situation of lifting. In terms of some of the results of the survey, we call these the big 4. These other types of equipment where people experience either moderate or greater difficulty in using the equipment, now, exam tables by far were the biggest area of problems with 225 people indicating that they had at least moderate difficulty using them, and X-ray equipment was a close second. Followed by rehabilitation and exercise equipment at 55%, and then weight scales at 53%. And just to clarify, rehab and exercise equipment is the kind of equipment that we often encounter at fitness centers, whether it be a treadmill or a universal gym or a stationery bicycle. All of that kind of equipment cause some difficulties for people. And there were other areas of difficulties with exam chairs, with communication aids, with dental equipment, eye exam equipment, and when we went down the list of hearing tests, hearing tests actually -- there were 11% of the folks had difficulty using hearing test equipment. Back to exam tables, what we learned about the difficulty there was that safety issues were major. That the tables were too high or too low, that they were too narrow, too long, or too short or too hard. People had difficulty transferring on to and off of them. They had difficulty positioning themselves on them, they weren''t comfortable and often people felt unsafe on them, once they actually got on to the table. Their ability to remain there, to balance there, stay in a position was difficult and very unnerving for a lot of people. Now, these same issues were also the same kind of things we got for radiological equipment because again, that often involves getting on to a table. One of the things that has gone unrecognized in this whole area of exam table access is that this is not only an issue for us, people with disabilities, but it is also an issue for the healthcare providers that of these traditional box tables have led to many workplace injuries for doctors and other healthcare providers. And OSHA estimates that 1.8 million workers develop work-related muscle and skeleton disorders. And the majority of the injuries that actually get reported were strains and sprains to the back and shoulders caused by overexertion in lifting or transferring, and they indeed resulted in people being off of work for several days or more. And that is an area that we often -- often goes unrecognized in terms of one more way to justify the important need for accessible medical equipment. Another area that often is a problem it is just not good enough to obtain the equipment, it is where you put it. Now, that seems obvious, probably most of you, but believe me, out there it is not obvious that sometimes the great equipment got placed in rather inaccessible exam rooms where it lacked the turning radius or the accessible path to get there. Or even just staff training, you know, I tell stories myself of going to providers and saying, you know, I need the accessible exam table and they say to me, we don''t have those, and I say, yes, you do. They are in exam room 8 and 14, and they go, oh, okay. So there are actually commercially available devices that are more accessible that are indeed on the market. But they are not widely used. And actually we found that exam tables in the healthcare industry are always the last things to be replaced. For some reason those coveted old box tables seem to just endure and endure and people don''t feel like replacing them when there is all this technology equipment they''d rather replace first. I often tell a story of a provider I was going to see frequently for a while, and one day I took them into the exam room and said -- took them into their own waiting room and said, look at the people in your waiting room, I really think you need to consider getting some accessible exam table equipment, and then I kind of forgot about that, and didn''t see the provider for the longest time and went back there many months later and they said, oh, June, yeah, hang on a second. And they chased this poor old couple out of an exam room, and the woman had a cane, a man had a walker, and they said, June, this is your room. And sure enough, it was a nice new accessible exam table in there, and I said, "Well, how did that happen?" They said, "Oh, June, get a grip. How do you think? You kept asking for it." So there is a lesson there I will get back to later. What you see in the slides are some pictures of the some of the newer equipment which indeed is flexible in terms of height and easier for people who are able to accomplish an independent transfer as well as for those who need an assisted transfer. X-ray equipment was also again a big, big issue for people. Now, one of the issues that was different for x-ray equipment was that some folks with disabilities were not able to lie flat. And due to contractures they could not actually sit in some of the MRI or scanning machines. Positioning, being able to stay still, stabilizing oneself are all major, major issues. And by again x-ray equipment, we mean things like MRI''s, mammograms, ultrasounds, scans, you know, scans are the CT, the PET, bone density kind of scans, all of the different kinds of equipment. So the next cartoon is just another way of illustrating the fact that even sometimes when you can get on the table it is being able to get your atypical body to work in these machines, and sometimes that is not possible. In terms of, for example, mammograms, we heard stories of women being held up under their arms to be able to access inaccessible mammogram machines. We also know and it has been documented in the literature that many women with disabilities are at higher risk of delayed diagnosis for breast and cervical cancer because of issues around lack of access to the equipment. And there are accessible machines, they do exist, they are available, but again, it is very iffy as to whether it is actually installed in the healthcare environment or not. One of the slides shows you one of the good practices which is the state of Rhode Island on their website, they list all of the mammography centers in a database which can be searched by wheelchair access, and I have given you the URL for that reference on the slide. So there is some good practices out there in terms of x-ray technology, but we have a long way to go. A weight scale was another huge issue for people how people actually get weighed. There is a cartoon in one of your slides - The weigh in health plan: shipping and receiving -- this cartoon initially we made up, we thought it was funny, but a lot of people said, that is not funny, June, that is where I actually get weighed in the laundry or in the loading docks, and that is just not acceptable. So this is unfortunately a cartoon that is rather true for a lot of people. The other issue around weight is a lot of providers say to people, well, just guess your weight. Guess your weight? Well, that is not acceptable either. Because that means people are receiving a lesser quality of healthcare if they can''t access a traditional weight scale. Now you know a lot of you probably would prefer not to be weighed at all or to know your weight. But you know the reality is that weighing people is a critical routine screening. When you are not weighed, the chances of a misdiagnosis or incorrectly prescribing medication or chemotherapy, they are big issues, they are major issues, so again, options do exist for increased access of scales, for foldable scales, scales that fold-up and out of the way, so they are footprints, you can have a smaller footprint. There is some pictures in the slides that actually illustrate one of the products where you can actually wheel the scale away or you can set it up very quickly. And it is usable by wheelchair users or anybody who cannot access a traditional step-up scale. Exam chairs are another area of problems for people in the dental environment, eye exams, laboratories, chemotherapy, dialysis''s, transfusion. There were major issues around transferring, positioning and stability. Then there were one of the issues that were problems for many people in working with their healthcare provider or their insurance carrier was determining which providers indeed had the kind of access that they needed. So this slide shows something that unfortunately is more -- you don''t see it very frequently, but it is something we have been working on out here in California, which is promoting that managed care plan, and fee for service plans offer directories, provider directories that actually indicate the degree of physical access that the provider has. And as you notice, it also includes exams and diagnostic equipment, so we have actually been successful in accomplishing this with one small health plan and Inland Empire Health Plan in San Bernardino and Riverside Counties in Southern California, and the next two slides give you one example of just a very basic approach that begins to help the member know what providers have what level of access. Again, it is not ideal, but it is indeed a beginning step that goes further than we have gone in the past. And some of the unintended consequences of this new element to the provider directory is that it actually drove improvements because there were a group of providers that said, "How come I got such a low rating?" And as it was explained in technical support and assistance was offered, some of the providers, not all, but a portion actually did improve their space and their access, so that they indeed could get a better rating in the provider directory. So we thought that was just important to note as one more driver in terms of the many strategies we need to use to get access improved. There is a slide that you see it talks about allergies and medical, chemical sensitivities, this is, of course the next frontier, and it is something that still we are working on, but we do know now an environment that Latex one is a significant problem for many with allergies and that is just the beginning of the iceberg of what we are exploring in terms of chemical sensitivities. We have also learned in our work that one person can make a tremendous difference in terms of promoting access in healthcare, and a study that is indicated on the slide is a study from the Massachusetts healthcare providers, 379 providers were surveyed and they were asked, okay, why do you make access changes? What have they been based upon? 60% talked about ADA compliance, 49% said they made access requirements to meet -- they made access changes to meet state requirements, and 33% said it was based on a patient recommendation or request for improvement. 25% talked about it was driven by their completing an ADA checklist. And 25% talked about it was driven by the certification process, for example, the Joint Commission on Hospitals, or CARF or other certifying agencies. And that, I just want to dwell for a few moments on the importance of individual advocacy and how -- this is how the field along -- we often note in looking at accessible medical equipment the effect that John Lundberg had. He was a gentleman in his 60s, a quadriplegic with a spinal cord injury, for over 18 years he had been urging his healthcare clinic to put in an accessible exam table. And the clinic just did not respond, and often there was no one available to help him transfer, and his provider frequently performed an exam while he was in his wheelchair, and sure enough, they missed a pressure spot that was developing on his buttocks and when they finally examined him about year after it began. It was infected, he required surgery, he was not only seriously injured by inadequate care, but he was laid up for months. Talk about the physical and psychological issues surrounding that, something that could have easily been prevented. And in the end was far more costly to treat than to prevent. So this produced serious consequences for both John and his healthcare system, huge amounts of funds were expended for surgery, a lengthy post op care and so on and so on. But the story didn''t end there, because John, he did find some solutions. He actually pursued some solutions through the ADA, and he and two other wheelchair users sued Kaiser Permanente on the grounds that Kaiser failed to provide adequate care for people with physical disabilities and that turned out to be a landmark settlement that occurred in March of 2001. And basically it provides a model for reform in healthcare, and it -- Kaiser had to install accessible medical equipment in way of exam tables. They had to remove architectural barriers, they had to conduct staff training and they had to review and update policies and procedures and their complaint system. So that was really a landmark case, and recently there have been a few more cases that Department of Justice (DOJ) has pursued and if they are on the call they may want to comment on that a little later on. But the Georgetown University Hospital case where there was allegedly failure to accommodate a wheelchair user by providing transfer assistance to an exam table for OB/GYN care, they were -- Georgetown had to pay some penalties and they had to undertake a facility wide review of their accommodations and accessibility issues and then a couple other more recent cases. But the John case, the Kaiser case had some lasting positive results, and one of the results is this new exam table created by mid Mark, that lowers further than previous tables and is less expensive than some of the previous accessible tables and has features and attachments that some people require for access, such as grab bars and the ability for the table to be flexible in sitting in-line position, and this table has been installed -- is being installed throughout the Kaiser system, so talk about the impact of one person has - that one person has had, it has been pretty incredible. So that one individual can be pretty significant. So the take home message for you advocates out there is that, you know, an individual can make a significant difference, and the Kaiser settlement hopefully sent a message for the healthcare providers, that they will have to create a more safe healthcare environment that is accessible for people with disabilities. So you all know this, but when providers are not able or unwilling or to adapt their techniques to perform the brothers that accommodate us, people with a variety of disabilities, then we are not receiving the medical standards of care that is equally effective as that provided to others, and the ADA is a tool that we got to use to raise the quality, the standard and the actual care that we receive. The slide, one slide here indicates that sources of complaints related to access in healthcare, through March of ''03, April ''94 through March of ''03. And if you look at exam tables, access to exam tables, there were only a total of only three complaints. I think since March of ''03, over 2 years out from this data, I think we probably have 2 or 3 cases now in hospital settings from Justice and probably another one or -- probably 4 from the clinic or service centers setting, so those numbers have gone up a little bit. But not as much as we''d like, so another take home message is that we have got to continue to point out the barriers and request that they be removed, so that we begin to make significant differences for people. Now, we also looked in terms of focus groups and other anecdotal reports that we got, why don''t people file a complain. What is the problem here? Well, we feel, I have complaints by the deaf and hard of hearing community. A lot of complaints about mobility access, but when it comes to the equipment, it is still low, and so total number of complaints aren''t that many here from Justice, so what is that all about? Well, we found that people don''t file complaints for a number of reasons, one, they are sick. And when you are sick, you don''t feel like doing anything. Or you don''t know how -- or that there is a fear factor. That they might anger the provider who they depend upon. There may be some retaliation in some ways, or that there is a perception that it is my problem, you know, the internalized oppression-you know-- it is just my problem, I have to deal with it, and others don''t because it is just too much work. It is too time-consuming, slow, and possibly costly. And because it can take years to get results and an enormous amount of time, sometimes people don''t want to deal with it because the issue is now and they don''t have the energy to cope with it, so we need to keep that in mind as we work with people in helping them gain their own sense of empowerment in terms of the importance of filing these kind of complaints and making these kind of requests. So another take home message for all of you is to remember to always plant the seed in healthcare, in the healthcare environment, whether you are a user, somebody who needs the access or not. Never leave without making the point about the need for access. I''d like to say that remember nagging is a higher level of intervention, when your healthcare providers facilities can be more accessible, point it out. Point it out. Don''t compromise your access to quality and safe care or other people''s access; get it on their radar screens. One of the things we have created for people is kind of a check-off list as to how they can plan ahead to insure greater access for their healthcare appointment. For example, if they know they are going to need a lift team, they call a week before and a day before and the day of the appointment. It takes a lot of work, but it ensures a more successful kind of appointment and unfortunately, we are still there when it comes to communication access and physical access, we have to remind the providers, I need an interpreter. I need the life team. I need the room with the accessible table in it. And this checklist goes into a variety of accommodations that people need and have to alert their providers to before they get there, to prevent all kinds of disasters from occurring at the appointment. In terms of what we could really use from you all is the slide that says survey on use of medical equipment. We are now in the process of surveying healthcare providers with and without disabilities in terms of their evaluation of the equipment, in terms of ease of use and access. And this survey is a much harder goal than the first one. We had people who loved the first survey; they were consumers who were very motivated to complete it. Getting healthcare providers to complete this survey is a much harder task, because you have to get them on the computer, it is not a long survey, but it is hard to get their attention, so we ask your help in talking to healthcare providers you know, who would be willing to complete the survey. And the survey is tailored to the person so they only have to fill out the portions that relate to their areas of specialization. Whether it be exam tables or whether it be respiratory therapy, they can go right to the equipment, part of the survey that pertains to them. So in finishing up here, I gave you one of the slides, the rehab engineering and research center website RERC. Accessible medical instrumentation and there are a number of resources there that we posted regarding the existence of equipment now that is more accessible. There are no standards, so there is nothing that we can say. This passes some standards test that is one of the things this center is still working on. We have been able to really amass a great deal of information that tells you what kind of appointment is indeed more accessible than others, so you can get that from this website. And one of the posts I heard recently that I really do appreciate and hope you will take seriously is that in terms of our own advocacy and the advocacy that we do with and for other people, it is your health, it is your life, don''t give up, fight the fight, make a difference. To expect less you demand less because an injustice to ourselves and to those who come after us. There is another website here from the Center that will detail for you a number of new healthcare, accessible healthcare series brief that is we have done on -- everything from access to exam tables to scales to exam room access to sheet for providers when they relocate. Access items to consider, access items that they can -- or improving access with limited resources, and some of the tax incentives that are available to people. So I think, Robin, I''d like to stop here and really ask people when they ask their questions, to also include comments about not what hasn''t worked, but what has worked in terms of your advocacy out there, and your successes in terms of looking at more accessible medical equipment. Robin, over to you.
Thank you, June, I think you have given us a lot of information, and some food for thought about the issues that I think some of us have had conversations with anecdotally, and people talking about these things, but I think one of the things at least through our offices as the regional centers, we find that people just either tolerate what has happened or feel you know that there is no other option, because they haven''t been exposed to what the possibilities are and don''t always consider how things like the ADA and other legislation does mandate that they have some equivalent access and there might be some things out there that people aren''t tapping into, or that you are hearing sometimes the excuse from the provider that it is too expensive or we only have 1 or 2 people who need it, and don''t want to invest into the equipment or whatever because it is such a low usage or whatever else it may be. So it is an on-going and a constant problem and I appreciate your information and some of the resources you have provided. If we could ask Melissa to come in and give us some instructions to our participants on how they can ask a question, we will then open it up to everyone else to be able to ask questions and as June has said, she is interested in hearing from you as well. So why don''t we go ahead and start that process.
All right. Great. Thanks. So I guess we have answered everybody''s questions or no one has a question right now. Again we would encourage people to think about what, here is your opportunity to ask someone. June, if you could give me some -- or give us -- the participants an idea of what are the goals and objectives of the RERC and where are they going right now with getting response from manufacturers and individual stakeholders within the medical community on some of these issues of accessibility of equipment?
Well, the RERC is taking kind of a mini-model approach at looking at the issue. And bioengineers are looking at the usability features and trying to classify them in terms of a way to contribute to eventual standards for all equipment. For example, exam tables, how low should the table actually go? How wide should the table actually be? Should there be stability or Velcro straps that are part of every table as kind of a peripheral device? Do they all need grab bars? Grab rails? What is helpful and useful for those people who will never be able to use stirrups, that are common for OB/GYN exams. We have bioengineering scenes, people that are looking at really classifying all of the details of access for specific kinds of equipment like scales, like tables, like radiological equipment. And then we have the policy side. How do we begin to incentify the field so that this is more of a can do and has to do requirement. What do we need to change? Certainly we need standards, but we also think that we need greater -- for example, tax incentives, that the current tax -- ADA tax incentives are not strong enough to impact this area of access, we really need to go much further there, particularly in terms of the smaller providers who are going to be able to successfully create a new burden or hardship in terms of their inability to pay for new equipment. So on the policy side, we are looking at incentive. We are also looking at the whole area of patient safety, you know, why hasn''t this become a stronger cry of the risk management people? And the worker''s comp people in terms of worker''s safety and, you know, what we are initially finding and we are about to do a lot more surveying of medical administrators is that, you know, when there are adverse events or people are dropped or their worker''s comp kinds of issues, the documentation about the actual cause of what happened whether it relates to equipment or transferring safety techniques, is not always very well documented. So it is a difficult thing to ferret out of data that we can''t often access. And the other thing we need to look at is who is making decisions about procurement? Who decides what medical equipment gets bought? What criteria are they using? And what are the drivers around those decisions? Robin back to you.
Hi, June. Can you hear me?
Hi, Pam, yes.
I have two questions. The first question is kind of in regard to what you are talking about, standards and equipment. We have been looking specifically at mammography issues and recognizing that the latest GE - MR Plus equipment does not go down low enough for a typical person who needs to be seated. We discovered this is the latest equipment that mammography sites are purchasing thinking they are getting -- maybe they are getting better as far as mammography quality but less accessible equipment. And we are finding a 5th of the sites in our whole state have this piece of equipment now updating their equipment. Is there anything that you are aware of addressing this mammography issue equipment?
I have just heard that from some of your colleagues recently as a major issue and I think we need to get the word out to the providers that - well, first of all, I think we need to call the manufacturer directly and say, hey, what is going on, you know, what -- to understand Pam, why is this equipment better and why did they actually decrease the accessible feature that existed in the --
Have you gone that far? Have you called them?
No, and that is probably the next step, because it is totally ridiculous. And what we have discovered is mammography sites purchased it not knowing it was not going to meet access issues it for people -- they had no idea, they made the assumption it was going to go as low as the previous equipment.
That is kind of advocacy I think that we all have to be on top of, and I really beg you to call them. And I will be glad to work with you on that. I know you and I have a call later this week.
Yeah, maybe we will come up with a plan to have, I think the more power sometimes of -- the more voices, or whatever, the second question I had is in relation, it is about a slide that you had, I think slide 39. You had mentioned that Rhode Island has a mammography center database about wheelchair access, and do you know, and I haven''t looked on that site, so the question may be answered there, is how they determined wheelchair accessible like what qualified for them?
Well, I think that is the devil in the detail question. And I - it has been a while since I looked at that, so I am not sure it actually goes into detail on the site, but it is definitely a question worth asking. And Pam, I want to go back to your first scenario, because I think that is so significant that -- you know, we have to jump on this very, very quickly, and I think that the manufacturers will begin to listen to us, we found another issue that is kind of a strange one, and that is that wheelchair users that have to access some of the MRI equipment, sometimes they are not allowing people into the room using their chairs to transfer directly to the equipment? Or if they have to do two transfers.
Because of the metal. And sometimes it is just a case of really communicating with the manufacturer and saying, hey, is this really an issue? I mean, when the equipment is off, is it really going to affect the calibration? And let us talk about what this means to people.
Right, right. I feel the mammography sites that I have spoken to in our state feel really bad, because they felt like, you know, they just didn''t know what they were getting and that wasn''t addressed. They didn''t know to ask, and that wasn''t promoted from GE that it was going to not go as low and so they are kind of in a bind with you know an expensive piece of equipment that they can''t turn around and get another one.
I would if I were you too, alert people within your system, I know you kinda kept a database on these centers, send them a letter, saying you just want to make them aware that the new equipment has some significant access issues so before you make a choice about that next equipment, you know, consider these issues.
Yeah, and so we are thinking of doing that, because we have gotten this data recently that a 5th of the sites, so before the rest of the sites start purchasing equipment, to at least let them be aware of what they need to be asking and looking at before they purchase something.
And this represents why this RERC exists and, of course, we should have finished everything yesterday. So this problem wouldn''t occur.
Yeah. Well, thanks, June.
I think it is an important point to emphasize, that in the purchasing and the procurement process that there is some language that can be, you know, instituted so that whenever any medical entity is purchasing, it is kinda educating that other level of people, your medical professionals may have an awareness, but not necessarily your procurement people who are making those final decisions and are out there searching for some of that equipment. I went on to that website you are talking about from Rhode Island and tried to find out how they defined wheelchair accessibility and they don''t. They just list wheelchair accessible locations, which also could also be addressing more the physical access to the building and facility versus solely access to the equipment as well.
It is unclear, you know. They don''t define what they mean by wheelchair accessible on their website. You know, it is an issue, obviously, in that regard. So --- to take our next question, please.
Hi, I actually work for the DOT disability resource center in a professional capacity, but I also manage a website in my private life called Parents with Disabilities Online which is a website devoted to making parenting possible and accessible and as independent as possible for people with disabilities. Part of that process of course is all of the medical care involved in actually having children whether you are male or female. And I get probably a couple hundred questions a year from people with disabilities who are seeking accessible medical care and I know of some key rehab facilities or what not that have women''s health centers around the country. But beyond the 4 or 5 that I know of in my mental rolodex, how does someone seek out appropriate facilities?
Well, I mean, the reality is the way we do it. I mean, as far as I know, the way we do it is we ask our peers, we ask people that need the same kind of access that we do where they go. But I think what we really need to do as advocates is to be calling the member services departments of our health insurance carriers and insist that they collect the data. Its part of what member services is about in healthcare. We shouldn''t have to be struggling to find these few and far between accessible facilities. It is part of their responsibility in terms of offering equally effective healthcare. So It is one thing to shortcut it and ask peers about it to try to find it that way, but I think we have to hold the system accountable and that takes more energy, and effort. But I think the payoff is going to be there in the end for all of us if we do that.
Thank you. Our next question, please.
Hi, June, this is Charlotte, long time no talk to, how are you?
A name from the past. Good.
Exactly. I have two questions. The first one is, is the price of this equipment that is accessible comparable to the non-accessible equipment that many, most doctors have today?
It is a good question, Charlotte, and, of course, a classic answer is, it depends, you know, those new exam tables are much lower in price than the old ones for -- because there used to be only one on the market and now they are becoming more. I haven''t done a cost study, but I do believe that, for example, an exam table, they are probably still is a price differential with the accessible tables still being somewhat more money. But I haven''t looked at that recently, so I am not totally sure, in terms of radiological equipment, mammography, I don''t know. We haven''t looked at costs.
Will, that information will be on the website for the Rehab Engineering Research Center by any chance? I mean, do they list costs of these items?
No when you go on our website and you look at the grids that we have created for scales and tables, we did not list costs, because costs is such a moving target, but what we did was, we gave you the website of each of the manufacturers, so you can go right there and get what the price of the data is that they are quoting.
That is such a moving target.
That will be helpful. The other question I have is tell us the best -- not the best, but how to file complaints. I assume they need to be filed with the Department of Justice?
And the Department of Justice on our website has very good and clear how to file a complaint instructions right there on the website, very easy to follow, in terms of the information you need to include. So it is not hard it just takes time.
And do they follow up pretty quickly on the medical cases? Do you know?
You are asking the wrong person, but if they are on the line, I hope they will answer that question.
This is Robin, just let me interject, first of all, on some of the price issues, I was looking at some back and forth here, and there is definitely a difference in the price on -- I am looking at one company that has both a power table which would be your adjustable height table versus a non-powered table and there is about a 3,000 dollar difference between the two. And so there is definitely going to be -- to be able to be said that there is going to be a cost associated with the power, I think that we have to, just as if it is more costly to rent an accessible port-a-potty than it is a regular port-a-potty, I think we have to hopefully move people past the cost of doing some of these things to the issue of more universal design that everyone can use versus, you know, not just one person, I mean, if someone who is having a temporary limitation makes it difficult for them to get up and off the table or a woman whose 9 months pregnant getting on and off of a table, that you know requires them to hike up. There is a lot of universal design and universal application to this. I think it is another message we have to give, not just focusing on the cost.
Robin I just want to add that the IRS has not always been our friend in this area, and that some of the providers who have done the right thing have gotten the right equipment, have paid more and then have been denied the credit or the deduction.
Yeah. Oh yeah.
Because of a rational is like, this is something everybody can use. Well, of course, it is something everybody can use, it is a good universal design, so we have got a real issue problem with the IRS as well.
Sure, and I mean, in the application to the use of the credit, but I mean, you know, just the overall, I think we just have to be careful about the message that we give out.
Yeah, I agree. If we just talk about the cost of ramps there would be any.
Right. Exactly. The other comment there in regard to filing a complaint, also, one of the designated agencies under the ADA and as well as has jurisdiction under Section 504 which many of our medical providers are recipients of federal dollars to Medicare and Medicaid and stuff of that nature, would also be, you would have the option of filing a complaint with the Health and Human Services, the Office of Civil Rights, of Health and Human Services because they regulate the healthcare industry.
And actually, Robin, I am glad you brought that up, we have gone through a sub-contract with DRDF Disability Rights and Defense Fund. We did a request for those complaints to HHS and they are significant---they are very few and the decisions have not been that helpful to us. So we still have a long, long way to go here.
Yes. Some education needs to go with -- along with that process as well then with, that agency. But, you know, often times we do see the DOJ will defer, will send over a health related case over to HHS Office of the Civil Rights for review, where it will come in that way too. So -- Okay. Thank you very much. Let us take the next question, please.
Hello, can you hear me?
Okay. Cause I am not sure if this is working real well or not. I have a fairly basic question for you. Have you found any place or done any work on trying to get instructions for both equipment and medication use for individuals that are done in either Braille, large print or written simply for people with cognitive disabilities? Equipment such as glucometers, orders prescriptions, nebulizers, things that people would use at home, where they don''t have a medical professional standing with them when they use it? Many people that I know have a lot of difficulty figuring out how to use the equipment that they have received through providers, have you dealt with any of this? Thank you.
It is an excellent, excellent question, and there is such a variety of home equipment that we need to focus on, probably some of the more significant gains in terms of access have come in the area of diabetes and making some of the needles and the meters where you read your blood sugar much more accessible in terms of large print and Braille markings and that kind of thing. Where we out here in California are currently the center is working with Kaiser, the pharmacy department to look at ways to more quickly turn around those awful patient information sheets that come with the medications that are like in 2 point font?
Oh, yes. [ Laughter ]
And so where we have actually have some policies and procedures in place where they will contract with alternate format providers to convert the information, and upon request, get it to the member in a format that they can use and read. But the whole area of home equipment and, you know, the control issues and the readability and the understandability and the formats, that is something that we are looking at but a person can''t cover the entire ballpark and so it does need attention, it is a huge area, but we have to remember to tell our people to keep requesting the information in a format that they can use, and if they don''t get it, then they should pursue some complaint avenues, because that is the only way we are going to change the system. And in terms of people with visual disabilities, there are centers, for example, in L.A. Here, there is a center for the partially sighted and there are other centers around the country where they actually do stock some of this equipment around diabetes that is much more accessible to that population. That is where they are having inroads.
Okay, I''d like to ask a question too. Is -- my son has autism and he can''t sit, because of sensory issues on the paper that is on the tables and he has balance issues, so there is no way that he is going to get up on any table at all. And -- so what we have found is, we have been through many doctors but the one we have now is just really wonderful, and it is more about attitude than anything. When my son had glass in the bottom of his foot, the doctor would sit on the floor, let him sit on a regular chair and he would help him get it out that way. So I think the attitude is just as important as all the other physical kind of devices or equipment or whatever, and I just really -- the question I have was, have you been working with the MDA and the AMA and other medical schools that they really get their training on state of the art equipment and best practices? And I would just like to hear what you have to say about that?
Yes, it is part of what our center does, we do influence the curriculums and the you know, the courses around disability competency and literacy and the attitudinal issues, but, you know, it is a very slow go. We find that some providers just get it intuitively, like the guy that sits on the floor with your son and gets the glass out, and that. And others don''t get it at all. You know, you mentioned an area that I -- has been a -- an interesting learning point for me, and that is a lot of people with disabilities have complained about that paper on the exam tables that has made for a lot of treacherous slipping and sliding and balance. The only community that actually likes the paper is the deaf community and hard of hearing because they have used it to communicate with the provider when they had to take notes. Only segment of the community that I know of that even likes that paper on those exam tables, apparently it is there for some kind of hygienic reason, but because it is always moving around, you got to wonder if it is just a token attempt.
Thank you. Actually, Pro-skin uses the sheets when you go to Pro-skin.
Okay. Thank you, next question, please.
Yes. Hello, Charles from North Carolina. I''d like to bring up a situation that probably hasn''t been looked at, but when we have people in housing developments, affordable and accessible housing and they are in wheelchairs, what about when they want to visit another friend within that housing complex and they are in the wheelchair and not able to get into the door of their friends''. Have you heard of that situation?
Hi, Luther, I am going to respond to that because this is a little off of the topic that our session is on today, there are definitely issues related to the accessibility and new construction that would address and look at the requirements in new facilities as they are built and doorways, even those that are not the accessible units like your neighbors or whatever. There are some things that really only apply to new construction standards. I would really encourage you to get some more information on this issue and how you may look at some advocacy for those situations in your community by contacting your ADA Center. I would encourage you to call their office at 800-949-4232 to get some direct consultation and assistance on that issue. We are not able to really cover that topic today because of it not being specific to the topic we are covering right now, and I don''t want to take any more time, but I really would encourage you to get more information, because there are laws and there are requirements out there that should be adhered to in that area.
Okay. One other question then, this had to do with transportation, but yet medical equipment again, people who are required to carry their oxygen with them, and certain Para transit will not transport them because of the oxygen tanks. Is that true under ADA?
Do you want to take that, June?
Do you want me to take that?
Yeah, there is definitely issues associated with that, with Para transit, and requirements and obligations that Para transit entities have for assuring that individuals are able to be transported, there are issues and concerns often raised about oxygen, and it is volatility and some of those things, but there are some requirements that transit entities need to follow again. I would encourage you to deal with your specific situation by contacting your center to have them assist you wither if ferreting out all the particulars and details, sometimes there are things that appear in some of these situations that take place that we don''t have all the details as to why a decision of a particular requirement is made. But there are restrictions out there for oxygen related to safety around, you know, cigarettes and smoke and other kinds of things, but the total outright preclusion of someone to be able to be transported with oxygen is something that the ADA does cover and would require them to address, but I would encourage you again to contact your center to get some more specifics and one on one consultation of the transportation issue in your area.
Okay. Thank you.
Sure, thank you. Next question, please?
Hi. I had a question regarding slide 52, where an actual provider directory gave some indication of information to the consumer. Was there any thought, I don''t know if you are aware of this, but from the provider viewpoint that -- by putting in the term call, either implies they don''t know that they have it, or it changes from time to time? I guess I am thinking of it from the provider side in terms of their liability knowing that they should comply with this information but then don''t somehow provide it.
Yeah, it is an excellent question. Basically, you know, we are not looking at the provider liability issues here, we are looking at good member information. And the reason that the call is there, particularly the limited access issue or partial access was that we found things like, you know, the bathroom was -- had a grab bar, was a single user bathroom with grab bars and was just under 5 foot turning it didn''t have -- just under the 5 foot turning radius, but was usable by some. The same thing like with parking with a small provider, they actually had an accessible space and an access aisle, but it wasn''t van accessible. So how do we rate it? Do we rate it as accessible or non-accessible. So this is really a conundrum, a question we have about how to do this. Again this is only a kindergarten small step approach to trying the, you know, take the first step in giving better information to people. Now, the problem with this call issue is not only what you said, but it is also, how can we ensure that when a person calls, they are going to get accurate and good information? So there is a member services, you know, if it is a managed care organization, we have been able to train the people on how to use the database to give better access information, but when they call the provider directory, it is still a bit of a crap shoot, and so it is a problem. I mean, again, this is only a very basic kindergarten step in a long process of the continuum. Does that answer your question, or is there more to it?
No, I -- it gives me the background on this particular example, and certainly I understand what you are saying, and appreciate your response. So thank you.
Thank you. We have time for another question if there is one?
Hello, can you hear me?
Okay. We are in Hawaii and the question - Well I had a comment and a question. One, you had mentioned Kaiser several times, so I wanted to let you know that in the particular clinic I go to at Kaiser here, they do have an x-ray table that is -- that can raise and lower so that people can transfer on to it with -- from a wheelchair. And the person lies down to have the x-ray taken, and the x-ray equipment is moved across the person. I wanted to let you know, that is available here. Also, this is not really medical equipment, but it -- I have seen it work in rural communities, so I was wondering if you had information on, if any medical facilities or doctor''s offices purchase equipment so that if they can''t get a sign language interpreter on site, they can use a remote sign language interpreter in a medical exam?
You know, I did see that demonstrated recently in Hawaii at the Pacific Rim Conference in January, but I think it is a good fix for areas where there is not good access for interpreters, the problem is, it is still an expensive fix and we are finding that a lot of providers don''t have computers available to make that work. I was very impressed by that, as a potential, you know, good communication access option for folks who use sign language interpreters, but unfortunately, it -- there are issues about costs and, you know, having the right equipment, but I think it is an excellent option that we do need to promote more.
Well, I was just asking because here we are separated by water between our counties, and on the different islands we don''t have enough sign language interpreters.
Are you using that technology there, is it more widespread in Hawaii or no?
Well, it is becoming available but we haven''t really used it for medical services but we are going to have a service provider move to Hawaii that will be providing video relay services and video relay interpreting services. So if equipment is available at, you know, the doctors that are in the hospital, it would be a possibility to do it.
I mean, I -- from a policy perspective, I would like to see that become a standard, particularly in emergency rooms where you can''t be waiting around for an interpreter to show up and take 2, 3 hours to get there. I think it would be a great thing if we could get that into eventual standards.
I think if anything, we are at the end of our time. I think with any kind of communication methods as technology becomes more of a player in the process, we still always have to keep in mind and cognizant of the fact that we do have an obligation to ensure that the communications effective communication and, so it is going to be dependent on the entity and working with the person who needs the communication, to ensure that whatever forms or methods they are using remains effective for that person. Communication is a very individualized thing for people and their experiences with that are going to be individualized somewhat too. So, I think technology definitely offers us opportunities and broadens our horizons, but not to lose sight of, you know, still having that obligation to ensure it is a factor. So thank you very much, and we are at the close of our time period here, and it has been a session with a lot of information, a lot of discussion, and a lot of dialogue. I hope people were able to get something out of it, and I want to thank June for once again joining us, she has been a presenter in the past. And we do appreciate her giving her time and energies toward getting information out there to the community. As I said earlier, a transcript of this program will be available within five business days on our website in the archives, that is at www.adagreatlakes.org. Just as a reminder, the next session is on September 20th, and this will round out our program for this year, and we will start a new series as of October 1, and well be posting our new agenda in the upcoming week or so, so you will be able to see what is in the future. As of September 20th, our session will be covering -- switching gears a little bit, and going to be covering readily achievable barrier removal. What does it mean 15 years later and this session will be focused on looking at the obligations of businesses who -- prior to the ADA, may not have undergone any renovation or construction, and just exactly what are their obligations to ensure there is access for people with disabilities and some of the issues we have had nationally around some of the lawsuits filed in different geographic parts of the country against businesses on Main Street for noncompliance with the ADA. So, tune in for that session if you are interested, more information available through your regional center and on the internet about that session and accessing that session. So again, thank you everyone for joining us today, and if you have questions, June made herself available through her materials with some contact information as well as I encourage you to also continue to use your regional ADA centers for ongoing information and technical assistance, again, 800-949-4232 both voice and TTY. Again thank you and everyone have a great day.