October 24, 2018
Panelists:
- Lisa I. Iezzoni, MD, MSC, Harvard Medical School
- Neera Jain, PhD Candidate, University of Auckland
- Karen McCulloh, RN, Founder, National Organization of Nurses with Disabilities
- Michael McKee, MD, MPH, University of Michigan
Coordinator: Welcome and thank you for standing by. All participants will be able to listen-only until the question and answer session of today’s conference. At that time if you like to ask a question you may do so by pressing Star then 1 and recording your first and last name. Today’s conference is being recorded. If you have any objections you may disconnect at this time. I would now like to turn the call over to your host for today, Mr. Daniel Davis. You may begin.
Daniel Davis: Thank you. Good afternoon. Thank you for joining us for the Medical Professional with Disabilities Webinar in celebration of National Disability Employment Awareness Month or NDEAM. The intersection of healthcare and employment among people with disabilities is a critical topic. Nearly 20% of Americans have disabilities yet professional students in key health fields and healthcare providers with disabilities still encounter serious barriers throughout their training and careers, barriers that reflect the challenges too many Americans with disabilities still face in accessing healthcare that others take for granted. Now I’m going to turn it over to my colleague Meredith Raymond who will provide an overview of today’s event and introduce our speakers.
Meredith Raymond: Thank you Daniel. Today we will hear from medical professionals with disabilities who are flipping the script and working to enhance inclusion of people with disabilities by working to improve healthcare training curricula and increase the access to and quality of healthcare for people with disabilities.
The Webinar agenda is as follows. We will first hear from Dr. McKee, Dr. Michael McKee of the University of Michigan. Then Dr. Lisa Iezzoni of Harvard Medical School, then Karen McCulloh, the Cofounder and Director of the National Organization of Nurses with Disabilities. And finally Neera Jain of the University of Auckland.
The presentations will be followed by a 15 minute question and answer session. At the conclusion of Ms. Jain’s presentation the operator will provide directions as to how to enter your question into the queue and a queue. Thank you all for joining us and Dr. McKee you may begin your presentation. Thank you.
Dr. Michael McKee: Okay thank you. Can you hear me?
Meredith Raymond: Yes.
Dr. Michael McKee: Just a second, okay all right. Thank you so much. My name is Michael McKee. I’m with the University of Michigan Department of Family Medicine. And my focus for today again just to celebrate the Disability Awareness Month, one of the things that is frequently forgotten is our contribution in the healthcare workforce or even for other professional careers. So one of the main take home messages I wanted to make sure people take with them is the concept that disability needs to be a vital part of the diversity equation.
And so today I’m going to be talking about mainly from the angle of the deaf and hard of hearing medical providers and also just kind of providing some input for many of my colleagues as well. So Meredith can you advance the slide? Thank you.
So one of the important things is realizing that we are wholly - we are really underrepresented in healthcare. And we’ve already now passed the Americans with Disabilities Act now it’s already been 26 years ago and yet we still remain underrepresented both in the student body and also as medical professionals. So there’s only right now by 1% of medical students and 2% of practicing professionals who self-report some form of a disability. So we have a long way to go to really make truly reflective of the patient background that we serve.
And the challenge with this is that we are still many professional schools still focus on more of an organic technical standard. So for example in a situation for myself the fact that I could not hear well was automatically at, you know, kind of a quick no for many professionals rather than just thinking about more from a functional technical standard on whether I could do the job with the appropriate accommodations. So that is a, that’s a key component that we’re trying to have medical schools, other health professional schools realize that they need to make that mind shift.
Let’s go (unintelligible) the SAMHSA slide once more. So why is it important to include that? Certainly the quick thing is when you have a diverse healthcare workforce diverse teams outperform teams that are not diverse and the same thing also applies when you include that us well. We’re not only more creative but we’re able to troubleshoot, problem solve for a large and unique population base.
So these are individuals that many providers struggle to not only relate but understand their needs. So it’s important that we need to be present as part of the medical workforce and not only to improve their care. This is a population similar to many of the other minority populations struggle with a whole host of health burdens and also healthcare barriers as well. So these individuals frequently complain about their low satisfaction and quality of care that they receive where they see the providers. And so it’s important that we need to not only help to train the workforce that’s already there but one of the best ways to do that is not only make our team more diverse and that indirectly influences the behavior of other health professionals.
The - one of the other thing is really difficult to teach for medical students and other health professional students is the concept of empathy. And for many of us who have a disability that comes pretty quickly and pretty easily because of our life experiences. And so that’s a skill that is under recognized but very powerful when we relate to our patients, especially patients with chronic illnesses and as well as people with disabilities.
So the other thing that’s important is that because of what we do and thinking about accommodations, thinking about strategies to overcome any potential barriers as a learner and also as a professional those applications or those approaches can be actually applicable for patients as they’re trying to figure out how they can improve their independence, how they can function in their homes, their careers or even their schools and their relationships as well.
The other thing is when I know when I was in medical school there was actually no disability training that we received. And I hear that story from many other medical schools. And unfortunately it’s sort of a hit or miss. And so the presence of us being there is a helpful way to not only teach both the professionals and students around us but there’s also many strategies that we can incorporate when we relate to patients, think about unique approaches also the use certain technology assisted devices, light alarms. There’s a whole bunch of different things and I’ll explain that in a moment.
Let’s go ahead and advance the slide. So I put this example up here. Certainly the first - that first picture doesn’t apply to me. That wouldn’t work. But obviously I’ve come in my - just in my medical school and my training as well as my professional career there’s been a huge evolution in the stethoscope especially the amplified stethoscopes.
So going from that first device I had which is the second picture on to the left was an earphone that would go over my ears and my hearing aids. These – yes this actually was quite loud and actually would amplify it to about 100 plus decibels. So even the patients could hear their lung and heart sound which, you know, at times could be quite amusing. But there were certainly challenges with using this device and led me to other much more refined amplified stethoscopes that were not only better in quality but my needs also changed as well as I became a program plan recipient in my residency years. And that allowed me to take advantage of the Cardionics stethoscope which is the fourth one. And this was a device that would allow me to directly plug in the stethoscope to my program plan.
I don’t have one other picture but as a medical student we also use a company called Bloodline Technologies which allow for a handheld photo cardiogram. And what was nice about that is that it gave me a visual ability to look at heart sounds so I can look at and with the sound waves detect murmurs and allowed me to work with the regular amplify the stethoscope to listen to lung sounds.
So these strategies are really useful for many of us but it also required me to work closely with a pulmonologist and a cardiologist to make sure that I’m listening to the appropriate sounds. So it’s important to make sure that we have the support available to work with students like myself, trainees and professionals like myself as well. Currently this point now I’ve moved on to the second to last photo in which I’ve used the Thinklab stethoscope. And it’s kind of a cutting edge, you know, looks kind of more like a futuristic stethoscope but works quite well with the cochlear implant. There it also works with an app you can use on your iPhone or Android. So it’s another useful tool to provide both auditory and visual ability to hear lung and heart sounds.
But what’s happening is that we are moving on to now handheld echocardiograms so this shift is helping all of us. And medical students nowadays are some places are even learning how to use their handheld echo which given the visual reliance can be quite applicable for deaf and hard of hearing students. So this goes back to the whole concept of about organic versus functional technical standards.
So if somebody was kind of thinking that first photo I really need to be able to hear it all and not have an amplified stethoscope and they apply to an organic technical standard it would not be a provider at this point. But if we’re thinking about functional technical standards, thinking about the abundance of technology, the best and rapid rate of advancements that we have that actually allows us to think more about the functional much more current approach in terms of applying the technical standards in many of the health professional schools.
So let’s go ahead and advance this slide. So some of our approaches to not only incorporating technology to overcome some of the barriers has also helped to kind of modify and make it much more applicable for patients, makes it more friendly for them. So light-based alarms we have pushed for that not only at an organizational level but also among the different individuals because that helps not only for people, patients who are at their bedside may pay attention to the light going off and they may have a hearing loss themselves.
When we think about the general population we have roughly about anywhere from 14% to 17% of the population have a hearing loss. So that’s a huge group. The other thing is there’s also Looperman and this is happening very quickly as the voice detect systems. So programs like Dragon, even Google and many of the major software programs have actually boosted their accuracy. So this is not only become another possible tool to use down the road as long as the technology is there and it’s reliable but that’s going to be a huge asset for many of the deaf and hard of hearing patients and providers both.
I showed on this slide you can see a picture of another deaf and hard of hearing provider who has now moved on and developed this product where there’s a clear mask. The mask is one of the challenging aspects for it and when we receive our training because many of us can lip read or see the expressions of the person wearing the mask. But one of the benefits that we’ve noticed is that when we use this kids and other even adults felt that using these masks not only helped them to relate to the providers so they weren’t as terrified, they weren’t as scared. So this universal design concept of helping anybody especially with a hearing loss might have also other not thought of benefits too.
And then certainly technology advancements and how we are able to do remote card service so we are right now as I’m talking we could see a card service with captioning services and that can happen anywhere. And the same thing for BOE mode interpreting. Keep in mind that these are more like technology approaches but there’s many others including in-person interpreters. So the point is we need to be creative but also engage both providers and patients when we think about what technology work accommodations works best for them.
Let’s go ahead and advance the slide. Hey Meredith can you advance the slide? So this next slide there’s been a lot of advocacy that’s taken place to really help break down many of the barriers to all allow deaf and hard of hearing students be able to advance in their careers or be even enrolled in medical schools or nursing schools. Unfortunately despite being 26 years out from the ADA we still have these battles, they’re frequent. We’re still battling with many older mindset that we cannot simply do the job. And as you’ve - we’ve now seen over the past couple of decades our numbers have grown. We have actually been successful. We are now even medical chairs we have two that I know of that are deaf and hard of hearing chairs of medical departments. One of them at the University of Arkansas and the other one is here at the University of Michigan.
So we are successful. And this actually should be able to open doors. Unfortunately some doors still remain closed and despite the advocacy effort organizations like the Association of Medical Professionals with Hearing Loss as well as the Department of Justice or even just lobbying or advocacy on the individuals themselves we continue to struggle with that.
And I even have a pretty powerful story in which a chair of a prominent department actually told me that I would never become a successful doctor because of my hearing loss but even when on to the next step to simply say that I stole a spot from another hearing student that would be a successful doctor. So we still have built kind of a mindset basically trying to shut the doors. And those need to be changed and we need to make sure that those doors are fully open and equitable as well.
Now we have a couple articles here that I put up and feel free to check them out. And they’re showing not only the barriers that remain but some of the progress that we’ve had. Unfortunately despite all of the advocacy sometimes we resort to litigation which is really sort of our last resort but unfortunately does still need to happen at times. So what we’re trying to do is advocate for ourselves without having to resort to that level but sometimes it does happen.
So let’s go ahead and advance the slide. So one of the other areas that we need to do a better job is making sure that individuals with disabilities, learners with disabilities including deaf and hard of hearing students that there’s an opportunity for them to be able to interact with the healthcare environment to see if this is the career that they want to undertake or at biomedical careers for example.
I’m not aware of any programs that’s available for, you know, healthcare environment who are deaf and hard of hearing students. Most of the time they tend to be more based on racial ethnic minority groups. So obviously we have not implemented this successfully yet with the exception of the Rochester Bridges to the Doctorate program. This is the only program that I’m aware of that has really set up a program, a pipeline to speak for biomedical careers.
This is really historically it’s been set up for biomedical scientists but it’s really kind of a providing a model that also could be implemented in a medical setting as well. The pipeline programs are critical because we can’t just expect that the numbers of learners and professionals with disabilities will grow without these kind of programs being implemented.
Let’s advance the slide once. So I wanted to mention the Association of Medical Professionals with Hearing Losses. So this is an upcoming organization conference that will be happening in Baltimore next year June 1 to 4. This is an example of an organization that has grown in numbers as we have demonstrated that we are able to do the job and but at the same time we need to work closely with one another not only to get, to network but also to share successful stories, what are some of the strategies that work for certain individuals may also be helpful for another one that’s starting a little bit earlier in their career and swapping (unintelligible) assisted devices, technology, successful strategies.
So the networking advocacy but we have also become a resource for many medical schools to help professional programs. So when they have student and they’re simply not aware, what’s the next step how can we accommodate? So this has become a very useful organization. So I want to mention that this might be a useful tool and also a connection that you might want to develop as well.
So let’s go ahead and advance the slide. So here’s my email and my Web site. If you have any further questions feel free to contact me. I also have my Twitter account as well. So I appreciate everybody taking a moment to listen to me and appreciate that. Thank you.
Meredith Raymond: Thank you so much Dr. McKee. Dr. Iezzoni you may begin your presentation thank you.
Dr. Lisa Iezzoni: Thanks. Okay next slide please, next slide. Hello. I’m starting up with a picture of a fossil from the Cambrian age. It’s a Trilobite which is about 520 million years old. I wanted to make a point that because I am firmly from the pre-ADA generation. I often feel like a fossil but I acknowledge that that’s even a little old for me. But it’s important for the younger folks out there to hear the stories to remember why this law is so important.
Next slide. Next slide. Next slide. The next picture shows Gordon Hall at Harvard Medical School, the large marble edifice overseeing the quadrangle. I started at HMS on September 8, of 1980. At that time I had a four year history of shadowy on again, off again symptoms that turned out to be the manifestations of multiple sclerosis. But I was young, busy and invincible and never sought medical treatment because the symptoms would go away and I would be back to my normal active self.
But during that first semester at med school the symptoms returned with a vengeance and I was finally diagnosed with MS. At the time HMS was a harsh place to be someone in my situation. At the beginning of my fourth year when I finally was at the point of applying for an internship and residency they refused to write my recommendation letter I therefore was never able to train to become a practicing physician.
Next slide. This slide shows what President George Herbert Walker Bush said was the proudest moment of his presidency July 26, 1990 signing of the Americans with Disabilities Act. Provisions of the ADA would provide future medical students from experiencing the same discrimination that I encountered I think, but I believe even today that these protections remain fragile and are constantly being tested. You know, as Michael kind of suggested earlier especially in the training of healthcare professionals, so we need to keep vigilant to keep the ADA strong. After medical school I became a health policy researcher and a dozen years later started focusing on health care disparities for people with disabilities.
Next slide, ten years after the ADA there was another watershed moment in 2000 when Healthy People 2010 was published shown on this slide. Every ten years the federal government can you go back to the Healthy People 2010? Back one slide please. Okay thank you.
Every ten years the federal government sets public health priorities for the next decade. And Healthy People 2010 set those goals for the decade starting in the year 2000. This was the first time that people with disabilities were identified as a disparities population by healthy people. It was especially critical that healthy people stated that erroneous his assumptions and misconceptions about the lives, values and expectations of people with disability contribute to disparities in their health and health care.
Next slide. Ten years later Healthy People 2020 shown on this slide appeared. Interesting right this volume focused on disadvantages in the social determinants of health that people with disabilities experienced as contributors to their worse health in healthcare compared to persons without disabilities.
Next slide. Next slide. We all have heard of Maslow’s hierarchy of needs depicted on this slide. People with disabilities experience disadvantages all the way up Maslow’s hierarchy from physiology to safety to love/belonging, to esteem and finally to self-actualization.
Next slide. I only have a few minutes to give some examples of the kinds of healthcare disparities that people with disabilities experience. The next few slides look at screening tasks recommended by these Preventive Services Task Force for all people which should include people with disabilities. As shown on the slide Pap test rates for women with disabilities are uniformly significantly lower than from women without disabilities, the red bar on the left.
However the rates of Pap testing vary by disability type. Women with limitations in self-care have the lowest rate followed by women with mental health disability.
Next slide. This slide look specifically at Pap testing among women with mobility disability. It shows that as women’s mobility gets worse the rate of Pap testing falls. So women with a worse mobility have Pap test rates 20% lower than women without disability.
Next slide. This final graphic looks at mammography rates. Again women with disability have lower rates than do nondisabled women. Women with self-care limitations have the lowest rate -- 15% lower than among nondisabled women.
Next slide. Now all of you have heard of Obamacare but you might not know that Section 4203 of the Affordable Care Act require the federal government to develop standards to make medical diagnostic equipment accessible for people with disability. What - several explanations for their lower Pap tests and mammography rates is that women with disability cannot access mammography machines or get onto exam tables for Pap tests. These standards came out in January of 2017 but in December 2017 the current administration decided not to pursue rulemaking about where accessible equipment must be available.
Next slide. Not having accessible healthcare facilities can contribute to findings such as those shown on this slide which presents breast cancer mortality rates for women with disabilities compared to other women. In all different stages women with disabilities are much more likely than other women to die from all causes not surprisingly but most importantly and worrisomely for all except stage II women with disabilities are much more likely than other women to die from their breast cancer. Next slide. We know from the research that we’ve done that part of this is because women with disability get worse quality care than nondisabled women especially lower rates of radiation therapy after breast conserving surgery. Part of that might be because radiation therapy is not fully accessible to women with disability.
For example I interviewed women with mobility disability who subsequently developed early-stage breast cancer to learn about their experiences. I’ve heard for example from (Pam) who has cerebral palsy. Instead of having Velcro straps or some other comfortably to keep her arms removing during radiation therapy which they did move because of her CP the radiation therapy technicians used masking tape to keep her arms still on the radiation therapy table every day she went. It might not be surprising to find that women with disability who experience situation like (Sue) might not seek radiation therapy even though it is clinically indicated.
Next slide. There’s lots more to say that’s just a drop in the bucket but I need to stop there. Thanks.
Meredith Raymond: Thank you so much Dr. Iezzoni. Karen you may please start your presentation. Thank you.
Karen McCulloh: Okay thank you. I wanted to just share with you that today we are celebrating our 15th anniversary this year because we were founded in 2003. But just about an hour and a half ago we were also inducted into the Susan M. Daniels Disability Mentoring Hall of Fame. So that is really a big honor for us and this is the first time that’s being shared.
So I have a different approach today because I’m talking about nursing. And I want to share a little bit with you first about what our mission is. And we are directed to being an open membership cross disability professional organization that works to provide equity for people with disabilities and chronic health conditions in nursing through education and advocacy. And just very briefly a few facts about our organization. It is the volunteer directors that assume the leadership, the operational and programmatic responsibilities for the organization without compensation because we have no paid staff. Sixty-percent of our board must be people with disabilities so the majority are nurses with disabilities. So we truly are very much a consumer driven grassroots organization.
But our directors hold a variety of expertise and they may be employed in positions such as nurse educators, researchers. They work in the conical arena of operating room, telemetry, palliative care. They lead other nonprofit organizations. We have a case manager and some of us have small businesses and others also work in the other social sectors, social service sectors. And we are geographically dispersed across the United States. One of the unique features about us -- and I’m pretty much out there as well -- directors who are disabled believe that disclosing the disability or chronic health condition publicly provides the education on what is possible for what nurses can do.
Please, slide please. Now I only going to get into the services because that gets into the things that we have learned that I want to share. Since 2004 we have been contacted by parents, high school students, nursing students, nurses with disabilities, other allied healthcare professionals and workers with disabilities. So we had collected a lot of data over the last 14 years on what’s happening within the healthcare arena.
NOND provides resources, information support, encouragement and mentoring for some individuals. Directors with the same or similar chronic health condition or disability provide mentoring as requested or that may be initiated by NOND and as we can. We conduct presentations, we publish articles and so forth.
The bottom line here is that -- slide please -- our main focus is on self-efficacy and self-determination. Nurses identify ourselves as healthcare professionals. And I wanted to talk about opportunities because this is really important since we are observing National Disability Employment Awareness Month. According to the American Nurses Association we have 4 million registered nurses in this country but according to CareerOneStop not all of them are working but we are very huge population of healthcare professionals in this country. In addition to that ANA estimates that 500,000 nurses will retire by 2022 -- and I’m going to be one of them -- and of about 11% to 15% growth in opportunities. And I will say that if you go towards the Western states, the mountain states the growth could be as much like in Idaho as 37%. So we know a lot of the nursing shortages are out in the Western and Mountain states.
The US Department of Labor Bureau of Labor Statistics says that we need 1.1 million new RNs to replace the RNs that are retiring and to build capacity to address the nursing shortage. But first we have to say okay we have employment but first we have to have education. So we have to recognize the fact that nursing is a STEM career. That means Science, Technology, Engineering, Mathematics. Students must be academically qualified and must meet prerequisites to apply to nursing programs. In comparison to 2003 when we were first founded we are seeing that there are more students with disabilities entering nursing programs and many and most are successful.
Slide please. Now talent is an education. Some universities and colleges are less proficient in providing reasonable accommodations while some schools provide accommodations in the classroom but do not provide accommodations in the clinical setting. And one of the issues that is always playing out -- and Dr. McKee was addressing that -- were the issues of their technical standards where the technical standards focus on functional ability and it continues to be a barrier that can exclude academically qualified students with disabilities from some schools.
This is - that is you have to hear, you have to see, you have to bend, you have to walk, you have to talk, you have to touch, you have to smell and so forth. To address those technical standards in 2015 two of our colleagues and in fact Dr. Beth Marks was president of our organization at the time and Dr. Sarah Ailey who’s on our advisory committee wrote a white paper on inclusion of students with disabilities in nursing education programs. And they did that for the California Committee on Employment of People with Disabilities. The white paper is available on the Association of Colleges Nursing Web site. And because our Web site is currently under construction we will have it there one that Web site goes public.
Slide please. So I’m going to be moving between education and nursing and employment because we - they’re so interconnected you can’t separate one from the other. But we want to look at nursing across the lifespan and we want to look at disclosure. And some of this is very profound. Nurses with disabilities in the workforce, we have been in contact with nurses with disabilities for the last 14 years and we have learned a great deal. We have nurses that are not apparent in their disabilities, they do not disclose that they have a disability to their employer.
We have nurses who are self-accommodating for themselves. They do not disclose to their employer. We have disclosure of disabilities to employer where documentation is provided and accommodations are received and then we have disclosure with the provision of documentation but they don’t always receive those accommodations and may wait for extended periods of time for those accommodations.
Some nurses -- and this is very hard for me to share but it’s true -- some nurses who have been on FMLA, the Family Leave, their job no longer exists, is downsized by the time they’re ready to return to work. And we have had some nurses who are terminated or forced to retire based on employer feedback that they do not believe they can continue to be a nurse.
Slide please. And I want to share on a personal note I did not become disabled until after I had been through nursing school and had some work experience and I was told I could no longer be a nurse because I was visually impaired. And that really impacted my own sense of identity on who I was because I identified so strongly with being a nurse. And so I decided nursing is about critical thinking about leadership so I was going to be a nurse.
So I wanted to share a study that was done by one of the members of our board of directors on nurses with disabilities in the workforce by Dr. (Dawn Debski). It is an unpublished dissertation and we hope it will be published very soon. But she had - she did interviews with 21 nurses with disabilities. Again we wanted to compare what we were finding in our data versus what she found in 2017 just this last year. She found that self-accommodation was very common. But what was very sad was nurses feared that requesting accommodation from employers would threaten their chance at being hired or remaining on the job. They also shared in this study that it was inevitable that they would have to request accommodations sooner or later because chronic conditions and disabilities sometimes worsen. And the reason why they do that they finally come to terms they have to do it is all about patient safety.
We also learned from the study that self-advocacy was really important and how a person is able to advocate for themselves, to address the process of accommodations is important. But they also found in this study that there’s a lack of process in the healthcare institution where employers offered no process in the workplace that described how to request accommodation. And there was employer resistance to the cost of accommodation. And we’ve been hearing this for a long period of time no matter where you are or what job you do, patient safety and nurses do the job, the essential functions of the job.
And the last, the sixth one is nurses settled for less. And this is very disturbing because they may be provided an accommodation but the accommodation is not working. And so they don’t say anything. They just deal with it. And the seventh was about our disability identity. Nurses with disabilities had varying perceptions of how they identified with disability and how they identified with disability did impact their process for requesting accommodations.
Slide please. Positive changes in education and continued challenges. What we know for sure is, is that disability services professionals education has improved dramatically since 2003 when we were founded and that more - they are providing a heightened quality of accommodation where more student access offices have been established and located on more campuses, particularly those schools that are directed by health sciences. It makes a difference.
Many of the schools of nursing have revised or are revising their technical standards to be more inclusive of students with disabilities but challenges still exist in exclusion of some schools. More students with disabilities are becoming academically prepared but many secondary school students, those that we talked to in high school are not aware that they could be a nurse.
And more institutions of higher education as we’re seeing in the last 15 years understand that their responsibilities are directed to providing accommodations based on the Rehabilitation Act Section 504 I think 1973 and as amended and the Americans with Disabilities Act 1990 and the Americans with Disabilities Act Amendment Act of 2008. Slide please.
So let us think about the current status. And I’m only hitting on some of the more important topics but not all of them in our timeframe but let’s look at the current status. Negative attitude stereotypes and myths continue to exist and they’re directed to students and nurses with chronic health conditions and disabilities both in school and at the workplace.
But the positive or good news is NOND is beginning to see some improvement in that. We also (unintelligible) and employers to remain concerned about directing the patient safety, the cost of accommodations as well as can the individual perform the essential functions of the job which I find interesting because if accommodations are provided of course they’re going to be able to do the job. But we have no data that is available right now that say that nurses with disabilities practice less safely than their nondisabled peers. It’s such a perfectionist stereotype that because we have a disability we can’t practice safely.
The employer accountability on the provision of accommodation needs to be established and reviewed for those that have accommodation policies. More diversity and inclusion initiatives are needed at healthcare institutions and at other in other health industries. One of the areas that we do know is and while it is not formally required at all the Office of Finance Contract Compliance Program 503 rules are suggesting that a goal of 7% representation of people with disabilities in the workforce, we do believe that that has had some impact in providing incentives for more diversity and inclusion institutions.
So nursing, nurses with disabilities are transforming the practice of nursing. Now this is true in most schools but not all that conical tasks are no longer being required to be performed in exact same procedure as everyone else. And when we first started out 15 years ago that’s the way it was.
So we now know that and students and nurses are performing tasks differently but they are able to maintain the integrity of the task and where the outcomes are the same. And for sure and Dr. McKee was talking about it, the advancements in technology in adaptive devices and smart phone apps and other equipment provides the opportunity for students and nurses with disabilities to be at a level playing field with nondisabled peers. I would not be on this Webinar if it was not for some of the technology that’s available to me.
Accommodations provided -- and we hear this a lot still -- accommodations that are provided are not special privileges but they are necessary to meet the needs of individuals with disabilities to assist in their success in school and at the workplace and where they have equal opportunity to choose nursing as a career. Slide please. So in the transformation this is what we believe. And this also follows up with some of what Dr. McKee was saying. NOND believes that students and nurses with disabilities are providing culturally relevant care. And quite honestly some of that care would not exist unless we are included in the workforce, enhancing communications on the - is incredible, it’s amazing how people will talk to us when they might not talk to someone that doesn’t have a disability. We also see increasing patient consumer involvement with greater self-determination directed to self-care increased motivation, emphasis on wellness and independence. And we assist in the development of creative strategies for long term care.
So advancing health outcomes is one of the things that we believe that we play a big role in. And as hospitals that had diversity and inclusion initiatives -- and many companies are doing this across the country -- they want to have people included in their workforce that represent their customer or patient base. It makes sense. So we believe that we assist people with their personal growth and goals whether we’re in the clinical setting or an outpatient or in some other role that we hold and we are definitely improving patient consumer satisfaction.
Slide please. And thank you. I think that it’s important to note here because I am coming – I’m going to retire soon that the National Organization of Nurses with Disabilities we have a very strong bond between and among nurses with disabilities and also those that support us. We have experienced challenges, barriers and for some a lot of discrimination but the members of the NOND Board of Directors are passionate about the mission. We do not want students and nurses with disabilities to experience many of the challenges that NOND directors have. Our work continues. Thank you very much.
Meredith Raymond: Thank you so much Karen. Because of time I just want to notice everyone, the audience we are going to move forward with Neera’s presentation next. And we will stay on for some Q&A but we – we’re conscious of everyone’s time. It’s almost 3 o’clock Eastern so stay on the line for Q&A if you’re able. If you’re not, we absolutely understand. And with that Neera please begin your presentation. Thank you.
Neera Jain: Hi everyone. My name is Neera Jain and I’m a Doctoral Candidate at the University of Auckland in New Zealand and today I’m speaking to you from Australia. I’m also a board member for the Coalition for Disability Access in Health Science and Medical Education and I’ll tell you a little bit more about that later. And I’m the co-author and co-PI of the research that informed the recent report Accessibility Inclusion and Action in Medical Education. And that was published by the Association of American Medical Colleges and the University of California San Francisco.
And today I’m going to talk to you about access for students with disabilities in medical education. Next slide. I want to start today with a quote from a medical student participant in the AAMC research. And what they said was if you’re not persistent, if you’re not perseverant you suffer. If you’re not ridiculously persistent and dogged and determined to be heard or listened to you have no hope at all. If you’re not willing to find your way yourself you won’t make it. Such high standards are not required of students without disabilities and that’s not fair.
And I start with that because what this student describes, the fight to be included in medical school, the labor required on the part of students to figure out accommodations and educate their schools is unfortunately very common. Next slide. Next slide. So to give you a sense of the prevalence of students with disabilities in US medical education this data comes from a study by Meeks and (Herza) published in JAMA in 2016. And this study is notable not just because it’s the most recent but also because it was the first study of prevalence to include a wider definition of disability as clarified in the 12,008 amendments to the ADA.
They found that overall 2.7% of medical students disclosed a disability to their school so students with disabilities remain underrepresented in medical education. Of the students disclosing the vast majority had nonvisible disabilities so things like learning disabilities, ADHD psychological and chronic health condition.
Next slide. So a little bit about the Lived Experience project that’s the research project I co-lead with Dr. Lisa Meeks that was funded by the double AMC and UCSF. We interviewed 47 medical students, residents and physicians with disabilities across the United States. And our aim was to document the stories of learners and physicians through their training, what barriers they experienced and what supported their training. And what we found broke down into two major areas -- those that related to the structure of education and those related to the culture and climate of medical training.
In the report we offer comprehensive considerations for education programs that follow from what participants shared with us. And I really encourage you to check that report out for a lot more detail. Next slide.
What I’ll focus on here is what I see is some of the larger complexities of access in medical education based on the findings from this project and also the findings from my current research. The first issue is stigma and attitudes. As people have described so far disability carries significant stigma in medical education and students are very, very aware of it. Stigma might be expressed in attitudes from peers, clinician coworkers, faculty or school administrators. And they might be expressing surprise or disbelief that someone with a visible disability is in a physician role. They might encounter negative attitudes towards accommodations or suggestions to pursue another goal because medicine will be too difficult. In response students often felt they had to be twice as good in order to overcome this stigma.
Students described concealing aspects of their disabilities in order to manage other’s perceptions to be seen as capable. Another concern is knowledge gaps and how this affects the accommodations process. In the Lived Experience Project we heard many reports that schools were unequipped to provide accommodations for students in medical clinical settings. In some cases people assigned disability service responsibilities at medical schools did not know about accommodations and the parameters of disability law. Similarly when a central university disability service office is in charge they may lack expertise and accommodations for the medical setting. And some schools relied on students to inform them what accommodations they needed. But students were not well versed in the tasks of medical education yet and often also didn’t know the breadth of what might be possible.
And when we think about this in the context of stigma we can see how this invites problems. Students may be hesitant to say what they need for fear that it might exclude them. Against this upscaling disability service providers about disability access and medical education can help to address this. Recognizing the tendency for knowledge gaps to occur and actively addressing them so who’s at the table, what knowledge don’t we have and how can we get it and ensuring that we’re including the student voice in safe ways can help to address these issues.
And this follows concerns with policy and practice. At many schools we heard that clear accommodation policies were not in place. In residency programs in particular often there was not a confidential person to discuss accommodation needs with and many residents described not knowing if accommodations were even available at that level. Against this having clear consistent policies, ensuring they’re visible and available to refer to, identifying clear and confidential pathways to request accommodations and reviewing existing policies and technical standards for currency, clarity and inviting language versus legalistic language can really help to address that.
Physical access remains a significant concern. Students described access concerns in clinical settings for provider spaces so spaces that medical providers use that maybe patients don’t use so things like scrub rooms or operating rooms, staff only bathrooms and roots for providers within hospitals they’re often not accessible.
In schools clinical skills and anatomy labs and lecture halls often weren’t fully accessible. In schools and hospitals automatic doors aren’t omnipresent and getting them installed takes time and money. So to counter this taking proactive measures to address inaccessibility even where you don’t have a current need planning for a student or employee to come along by having a progressive access plan to upgrade gradually this is money well spent to pave the way for the people who are coming.
Next slide. So where to from here? I want to point you to some helpful resources in addition to what’s already been mentioned and some ongoing projects. First in response to the need for better representation of doctors with disabilities Dr. Lisa Meeks at the University of Michigan along with Dr. (Pam Lial) from the University of Toronto started a social media campaign called #DocsWithDisabilities. And you can check out that hashtag on Twitter and Instagram. It’s an ongoing campaign. And I have provided one example from one of the – of one of their infographics here on the slide of Dr. (Molly Lubin) talking about what her deafness brings to her practice as a psychiatrist and as a clinical educator.
Another important resource is the Coalition for Disability Access in Health Science and Medical Education. This is a professional community that’s interested in improving disability access across the health profession. It’s a group for people working in disability services, universities, faculty, and school administrators. And the group shares ideas, resources and troubleshoots emerging concerns on our active listserv and at our annual symposium. The public Web site hsmcoalition.org also has a number of valuable resources that you may want to check out.
And finally I want to suggest broader consideration of universal design in medical education. As curriculum changes happen movement towards things like competency-based evaluation and time variable programs it’s critical that we take these opportunities to consider how changes might affect students with disabilities and also use periods of change as opportunities to think about improving access from the ground up rather than as an afterthought.
Next slide. So I’ll just close with a final quote from a participant in the Lived Experience Project. This is what the student said. He said, ‘I think you’re going to do something impactful. We want to have you here. If that doesn’t look like what it looks like for other students that’s fine.’ I really felt settled with where I was with that school after that conversation. So this was a medical student talking about what someone on their admissions committee said to them. And to me this quote exemplifies the idea of a culture of access that I’m studying in my current research. It’s really the ideal experience that we want all students to have a medical education.
Next slide. And finally I just have some references and additional resources. These slides will be available afterwards for your reference and thank you so much.
Meredith Raymond: Thank you so much Neera and to all of our presenters for such comprehensive information and important information in a short amount of time. Speaking of we are going to launch our Q&A portion now. We are going to keep the Q&A portion to about five minutes. And operator if you could go ahead and provide directions onto how to call in these questions. Thank you.
Coordinator: Thank you. At this time if you would like to ask a question you may do so by pressing Star then 1. Please record your first and last name to ask your question and to withdraw your question you may press Star then 2. Once again to ask your question on the audio portion please press Star then 1 and record your first and last name. One moment.
Meredith Raymond: And to also add this is Meredith. Dr. Michael McKee had to step away from the Webinar so he will not be available to answer any questions but feel free to ask questions broader in nature or also specifically to speakers as well. Thank you.
Daniel Davis: While we’re waiting for questions I can read a couple that have come in over messaging. “How does the demand for speed during visit and the number of patients seen per hour or day affect your affect practitioners? Is there any time accommodation? Time is money so wonder about barriers resulting from economics?”
Karen McCulloh: Hi Daniel. This is Karen McCulloh. I had two responses. I know that in school with students who have low vision. And when they’re in the clinical setting they frequently will request a smaller patient load which may or may not be granted but the ones we worked with that’s been granted.
And what happens is – and this is really a great question that’s asked -- we have our nurses are generally choosing areas where they know that they can practice safely and they can meet the pace of the requirement for their job. And so but no matter what the nurses are have a heavy patient load and one of the things ANA said was that the nursing shortage is causing a lot of job dissatisfaction because it’s increase the stress on the existing nurses that exist in the clinical setting. So I don’t know if that quite answers the question but I think from the student side of it accommodation will be provided. The likelihood is if you can’t keep up with the pace then you have to find another specialty to work in.
Daniel Davis: Thank you Karen.
Neera Jain: This is Neera.
Daniel Davis: Go ahead Neera.
Neera Jain: So sure. I was going to just echo what Karen said and also say that oftentimes what we see for students who need maybe a little bit more time during their training is that once they develop techniques to do the work and get the right assistive technology in place they build their speed over time. So they may need a time accommodation in the beginning as they’re getting used to a setting or getting, learning a skill so that would be in training, but in the workplace it might be figuring out a setting, figuring out what works there that then they’re able to build speed over time. But I think Karen’s absolutely right that what we see often is people self-selecting as everyone does who goes into a health profession self-selecting into a specialty and a workplace that matches their disability related needs, their interests and so on.
Daniel Davis: Thank you. One other question that we have online is, “Would any presenters be able to provide information on whether there is a professional organization for medical professionals who are blind and information on tools and accommodations for blind medical students and staff and patients.”
Neera Jain: Sure. This is Neera. So as far as I know there isn’t a specific professional organization for medical professionals who are blind. But what I will say is that there have been a number of blind or low vision medical students who are now practicing. And so there are people out there people like (Tim Cortes) who went to the University of Wisconsin, (Kurt Herzer) who went to Johns Hopkins and (Matt Gleason) who went to UCSF are three more public people that I know of and people do reach out to them directly and also the Society for Physicians with Disabilities as a resource across disability types that people can contact and folks are members there who provide resources. And again the coalition is a great resource. It’s – I’m not sure who this person is but if there’s somebody who works at an education institution the coalition is a great resource.
Daniel Davis: Great. And we have one more question that came in on the chat line and then Meredith I’ll toss it back to you. We - for Lisa, “Regarding the regulations for accessible exam tables is it no longer required or just on hold?” I can actually add to that if Lisa if you want me to.
Dr. Lisa Iezzoni: Right. So basically the thing that’s happened in January was that standards were approved in the final rulemaking in the Federal Register. The next step that needed to be taken was for the Department of Justice to do what’s called a scoping where they say okay now we’ve got these standards. How widely do these types of equipment need to be available? For example does one out of ten exam table need to be a height adjustable exam table? That rulemaking was what was put on hold by the Justice Department on December 26 of 2017 okay? So any healthcare provider can go out and buy this accessible equipment and can request and try to make sure that it meets the standards that were put forth in the final rulemaking in January. But it’s just that there will not be an absolute requirement by the Department of Justice that X number of tables for example be accessible.
Daniel Davis: That’s absolutely right. And just to elaborate very slightly on that, it’s – there is the Access Board Standard is operative as a voluntary standard. It’s available on the Access Board’s Web site which we can provide after the call. And one thing that you should know is folks should know on the call is that a number of providers are beginning to move toward those standards either various hospitals that are engaging in settlements with the disability community to provide accessibility or sometimes It’s actually being affirmatively provided by providers or insurers. One such example is Centene’s provider accessibility initiative which they’re – where they’re piloting, which they’re piloting in three states and where my understanding is they are using bulk purchasing of accessible medical diagnostic equipment to address accessibility needs. With that I’ll put it back to Meredith since I know we’re at time.
Meredith Raymond: Thank you. Thank you Dr. Daniel, Dr. Iezzoni and Neera for those responses. I just since we did indicate that questions should come through the Q&A line, operator I just want to say if there is one that we can take from that line? And then I emailed all the participants last night a reminder about the Webinar. Feel free to email me back with any questions and I can circulate amongst ourselves and we can work to get you a response and also we will be sending out the slides as well.
And thank you. There was some formatting issues with some of the slides. So that is because of our platform so thank you for your patience with that. And with that operator could you please see if there are any other questions in the queue and then we will conclude?
Coordinator: We do have a question. The question comes from (Lance Marshall). You may ask your question.
(Lance Marshall): Are there federal or state laws prohibiting the granting of licensees, licenses for disabilities or is that something the medical licensing boards consider on a case by case basis?
Daniel Davis: Neera?
Neera Jain: Yes I can answer that. So this is a bit of a complicated answer as you can imagine. So each state has a licensing board that issues medical licenses. And each state has a different process so the questions they ask may differ. And the way these questions are asked is often complicated for people to know how to answer because the questions can be something like have you ever have mental healthcare before or do you have a disability that will prevent you from providing care?
And so often people don’t know exactly how to answer it and answering it can raise flags for licensing boards that create sometimes more trouble than they’re worth. But it’s up to the licensing board to handle that as they see fit. I think it’s important to note that the American Medical Association recently issued a call to state licensing boards regarding questions that they ask about mental health and recommending more focused questions be asked about people’s current function and whether there is something going on currently that is affecting their medical practice.
And oftentimes what people will say is even if they have a diagnosis of any type, any disability type or including mental health that they may have that but it’s not affecting their process. They have measures in place to accommodate themselves or they’re in treatment and it’s not affecting their process. And so just making sure those questions are focused to ensure people can answer them in ways that make sense. So you may have a mental health condition but it’s not affecting your process and so not kind of raising flags where we don’t need to raise flags so I guess I hope that answers your question but it’s complicated and it is a state licensing board that evaluate that.
Karen McCulloh: And this is Karen. I just wanted to add to it. All of the nursing boards I think their first priority is they need to ensure patient safety. And we have had students who have graduated who are now getting their first license who come back to us and say, ‘What should I do? I have bipolar but I’m on medication, I was four years working on a bachelor of science in nursing. I’ve had no problems but what do I do?”
So I just wanted to reinforce what Neera was saying if it raises a red flag but also honesty and integrity is also important in all of our health professions but is still I think some boards maybe have not traveled along as fast as many people with disabilities within the professions whether it’s medical school or nursing. So I just wanted to say ensuring patient safety is one of the biggest issues for nursing.
Neera Jain: Absolutely.
Meredith Raymond: Great. Well think you both Karen and Neera and thank you all the audience for the questions but yes thank you so much everyone for your time especially in the event that we have gone over, longer than we planned. Like I had mentioned a few moments ago I will be – the slides and the recording of this Webinar will be posted to our Web site within a week. And also if you have any other questions or follow-up items you would like to ask me feel free to respond to the email. I sent it last night. And for those that might not have it my email is Meredith M-E-R-E-D-I-T-H.raymond R-A-Y-M-O-N-D@A-C-L.hhs.gov. And with that thank you so much everyone for joining and we look forward to advancing this work in the future. Thank you.
Daniel Davis: Thank you.
Karen McCulloh: Thank you.
Neera Jain: Thank you.
Coordinator: This concludes today’s conference. Thank you for your participation. You may disconnect at this time.