Service Dogs and Disability Rights with Tiffany Lee, JD

[00:35] Dr. Linda Bluestein: Welcome back, every bendy body. This is the Bendy Bodies Podcast, and I'm your host and founder, Dr. Linda Bluestein, the Hypermobility MD. This is going to be a great episode, so be sure to stick around until the very end so you don't miss any of our special hypermobility hacks. As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Today I am so excited to have Professor Tiffany Lee with me. She is an adjunct professor of law at Washington and Lee University School of Law, where she teaches courses on disability law, healthcare law, and bioethics. Her research and publications focus on disability rights law with an emphasis on accessible emergency and disaster response, service dog law, and technology accessibility. Professor Lee lives with hypermobile Ehlers-Danlos syndrome, POTS, or postural orthostatic tachycardia syndrome, and chronic migraines. Professor Lee, hello and welcome to Bendy Bodies.

[01:44] Tiffany Lee, JD: Hello, it's great to be here. Thank you.

[01:50] Dr. Linda Bluestein: Fantastic. I'm so excited to chat with you. This is such an important topic. Can you start out by telling us what the Americans with Disabilities Act is?

[01:56] Tiffany Lee, JD: The Americans with Disabilities Act was the first major federal law in the United States that comprehensively protected the rights of people with disabilities. The main three portions of the act that are usually discussed are Title I, which covers employment law, Title II, which covers the actions of state and local governments, and then Title III, which covers what are called places of public accommodations — the types of places you might go every day like a grocery store or a hotel.

[02:32] Dr. Linda Bluestein: Okay, great. And how is disability legally defined?

[02:34] Tiffany Lee, JD: Disability under the Americans with Disabilities Act is any condition that can impair the functioning of yourself in any major life activity. Major life activity is defined very broadly — everything from the function of your immune system to a mobility disability to mental health concerns to developmental disabilities, anything that would impair something that is a life activity that we would think of as being something we do regularly.

[03:17] Dr. Linda Bluestein: Okay, and do you happen to know under that definition what percentage of people in the United States, for example, are disabled?

[03:26] Tiffany Lee, JD: I don't off the top of my head, but it is a fairly considerable percentage, generally more than most people would think.

[03:33] Dr. Linda Bluestein: Yeah, I would think so. And can you explain what disability benefits are?

[03:36] Tiffany Lee, JD: Disability benefits are SSI or SSDI, and that is something that you can receive from the federal government as a result of having a disability that significantly impairs your ability to work and to earn a living. This usually comes also with the provision of Medicare benefits in addition to financial support.

[04:04] Dr. Linda Bluestein: Okay. And what about reasonable accommodations in the workplace? Can you explain what those are?

[04:06] Tiffany Lee, JD: Reasonable accommodations are any modification made to a workplace or to the nature of a job to accommodate somebody's disability. The term "reasonable" refers to what's reasonable in the context of the employer, so a major employer may have a much higher threshold for what is reasonable — they may need to provide more — whereas a very small employer, a small family business that doesn't have as many resources, may not have to take on accommodations that are beyond their means.
[04:47] It also has to be reasonable in the sense of being reasonable for the job. You have to be able to still complete the basic functions of the job with that accommodation. And then finally, it has to be reasonable in terms of the disability. One important thing with reasonable accommodations is that it doesn't necessarily have to be the individual's preferred accommodation. It just has to be adequate to accommodate them and reasonable in context.

[05:14] Dr. Linda Bluestein: Yeah, this is something I think a lot of people really struggle with, and it can be very, very challenging. How can an employee get a sense of whether or not what they're requesting is a reasonable accommodation?

[05:27] Tiffany Lee, JD: In an ideal situation, determining accommodations is going to be this interactive back-and-forth process with the employer, where you come to a mutual understanding of what's going to work for the employee and for the employer. But one thing you can do if you're really not sure where to start is get online and see what other people who are impacted in similar ways — whether or not it's the same diagnosis — who have similar life impacts from their disability have found to be useful in the workplace, and ways that they have found that employers can best accommodate them. A lot of times that's a good starting point.
[06:10] Doctors, physical therapists, occupational therapists — they can also be great resources in determining what accommodations may work.

[06:20] Dr. Linda Bluestein: Okay. And are there particular groups that you're aware of that people can join to get that kind of information?

[06:28] Tiffany Lee, JD: There are a number. There's the American Association of People with Disabilities, which represents the needs of people with a wide variety of disabilities. But also there are disability-specific groups who may be able to provide more specific advice on the impacts of a specific diagnosis and what's reasonable for that. I've honestly found online forums to be pretty useful for accommodations because with that you're getting firsthand accounts of what has worked for specific individuals who may have similar limitations in the workplace.

[07:13] Dr. Linda Bluestein: Okay. And reasonable accommodations — how does that apply to someone with Ehlers-Danlos Syndrome or a related condition like Hypermobility Spectrum Disorder, Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome, etc.?

[07:30] Tiffany Lee, JD: A reasonable accommodation is not really based on diagnosis, it's based on the individual's functional needs. For example, for me as somebody with Ehlers-Danlos, I need good seating at a desk, and since I'm a part-time wheelchair user at work, I need wheelchair access. I need to have a desk that can accommodate my wheelchair to pull up under. I'm very lucky where I teach that things are really quite accessible — in fact, the desk in my classroom actually raises and lowers to accommodate whatever height you need.
[08:11] For somebody with POTS, for example, sometimes a modified work schedule, if that can be arranged, or partial work from home. I tend to try and arrange my schedule so that I can get home at some point during the day most days to rest and to work from home. And that's not possible with all jobs, so sometimes you have to be creative in finding solutions.

[08:39] Dr. Linda Bluestein: Yeah, that makes sense. And are you familiar at all with disability law in other countries? Because we have listeners from all over the world.

[08:50] Tiffany Lee, JD: Not in any degree of detail, no. Most countries have some form of disability rights law. The extent of the coverage — who it covers, what it covers, and what rights are protected — varies pretty considerably, so I would especially note that nothing I say can really be taken to apply specifically to other countries, even other countries with similar legal systems like Canada or the UK. Each country does things very differently.

[09:26] Dr. Linda Bluestein: Okay. And in terms of accommodations, I know it's quite common for people to request accommodations — for example, if they're a college student. How do they go about getting those accommodations and how do they determine what's appropriate?

[09:43] Tiffany Lee, JD: The accommodations process in college usually starts with making contact with the disability services department, which can be under a number of different names, but if you call and ask for disability services, that'll usually get you to the right starting point. Likely you'll be asked to meet with somebody there and you'll discuss your situation. They will likely request documentation showing what your disability is and what might be reasonable accommodations.
[10:13] Then, in some ways similar to employment, there should be this interactive process of determining what will allow that individual to best access higher education while maintaining the essential nature of that education. And this can be difficult at some schools. Schools and colleges vary pretty dramatically in how well they work with students with disabilities, and I always recommend that if you are a person with a disability looking at higher education — whether you're coming straight out of high school or going back to school — that you talk to other students with disabilities at that particular campus and find out what their experiences are. It really can make or break the experience of a person with a disability on a campus based on how well disability services handles the accommodations process.

[11:20] Dr. Linda Bluestein: Yeah, that's not surprising to me. I happen to know somebody who went to a small private school and, really, all it took in that instance was a parental figure speaking with somebody who was pretty high up in the department and explaining what the situation was and what kind of accommodations would be helpful, and then a further conversation between the student and this person. The accommodations were put in place — they were relatively minor, so I think that helped. I can see where it could vary dramatically depending on the size of the school and how it's structured and a variety of factors like that.

[11:57] Tiffany Lee, JD: And sometimes there can be pushback from faculty as well who may not want to provide accommodations. In those cases, disability services is your best resource because they can enforce those accommodations.

[12:19] Dr. Linda Bluestein: Yeah, that's a really good point. So even if you have accommodations in place, if you're having difficulty with a particular faculty member, it's a good idea to get in touch with disability services because they can help facilitate that for you.

[12:32] Tiffany Lee, JD: And to do so as soon as possible.

[12:34] Dr. Linda Bluestein: Mm-hmm. Yeah, that's a good point. Being proactive really helps as compared to waiting until things are in a more dire situation.

[12:43] Tiffany Lee, JD: Yeah.

[12:46] Dr. Linda Bluestein: What about in high school or elementary school? How does that differ?

[12:48] Tiffany Lee, JD: That differs substantially because that's actually under a completely separate law — the IDEA, Individuals with Disabilities Education Act — and under that, the schools are required to identify students with disabilities and provide them with appropriate accommodations in an individualized manner. These are usually called IEP plans. There's also something called a Section 504 plan, which is under Section 504 of the Rehabilitation Act, and that predominantly looks at modifications to things like physical environments and schedules, whereas IEPs look more at the nature of how things are being taught or presented.
[13:37] So for example, somebody who may just need more time to get from point A to point B between classes may only have a 504 plan, whereas somebody who requires learning disability services may be better benefited by an IEP. Those plans are especially for younger students handled by a team at the school and the student's parents. Ideally, as the student gets older — by the time they're in high school — the student will start playing a role in this process as well, because it's important for a student to learn how to advocate for themselves and their own accommodations. Because once you start college, really everything changes — it's now entirely that student's responsibility.

[14:35] Dr. Linda Bluestein: Right, and I hear so often from parents that they have difficulty getting 504 plans or IEPs in place, and it can be for a variety of reasons. Do you have suggestions for people who are really struggling to get these kinds of plans in place?

[14:55] Tiffany Lee, JD: One thing that can be very beneficial is to find an advocate. It doesn't necessarily need to be an attorney, although having an attorney has a certain weight behind it. But an advocate from an organization that is either disability-specific or that works specifically in education can be very helpful in helping a parent establish what they need to do in their individual circumstance. But a lot of it is simply continuing to push. Unfortunately, I think some schools think that if they make things difficult enough, the parents will stop pushing for those accommodations, and you really can't stop. You really have to continue that push.
[15:45] That said, I do know of many parents who have opted to move or to put their children in private schools because of the difficulties they've had with particular school districts, which is very unfortunate.

[16:02] Dr. Linda Bluestein: Wow, that definitely is. And probably for those families, moving is quite an ordeal — they obviously have a child that's disabled enough that they're making that choice. That's got to be really hard. Why do you think the schools do that? Do you have any thoughts about that?

[16:19] Tiffany Lee, JD: Some of it I think is simply a lack of education, or a lack of knowledge and awareness of people with disabilities. Sometimes it's also funding. Certain accommodations are expensive to provide, such as a one-on-one aide, and while it's expensive, it is still the school's responsibility to do so. However, I think there is some reluctance due to the expense, and of course a lot of public schools aren't working with a very large budget, and as budgets get cut, services tend to get cut as well.
[17:00] With that said, that doesn't remove their obligation under the law to provide these services, but I do think that plays a large role.

[17:10] Dr. Linda Bluestein: Okay, and we had some really great questions from people on social media when I shared that I was going to be speaking with you, and I'd love to share some of those questions with you. The first one was, how much should you share about your disabilities with employers if you're applying for jobs or universities and that kind of thing?

[17:32] Tiffany Lee, JD: There are two schools of thought, especially with employers. I tend to be of the school of thought of sharing the minimum that you can possibly share, which in the application process — usually until you get to an interview — is nothing. You're under no obligation to disclose anything about your disability or medical condition. Now, if you have a disability that is visibly obvious, of course, if there's an in-person interview that will become apparent, but you're under no obligation to answer any questions about your disability, and they really shouldn't be asking about it during the application and interview process.
[18:06] Really, the only thing they can ask is, "Can you do this job with or without reasonable accommodations?" And the only thing you need to say to that, assuming you can, is yes. Once you have an offer, that's where the accommodations process and the interactive process of determining appropriate accommodation should start.
[18:35] Some people are more comfortable disclosing ahead of time because they want to find out for themselves early on how willing that employer is going to be to work with them, and they may choose not to proceed in the application process if they think the employer is not going to work with them.
[18:52] With college and university applications, a lot of times we see students talking about this in their personal essays, and I don't think there's anything wrong with that. I wouldn't discourage it. How much you want to disclose is in that situation very personal. Disability services is not going to see that, so I wouldn't imagine it would negatively impact accommodations later on. But again, there is always the possibility of discrimination, and that's something you have to keep in mind when deciding how much you want to disclose.

[19:39] Dr. Linda Bluestein: I think it could also be hard — as you're talking about this and I'm thinking about various different jobs that I've had and things I hear from different people — to figure out how well you'll be able to perform the job with and without accommodations. Is that something that you see as well?

[19:58] Tiffany Lee, JD: Yeah, it can be hard because sometimes if you haven't worked in that field before especially, you may not know what works for you and what doesn't. And in fact, I know somebody who's in that situation right now. If you reasonably believe that you can do it with accommodations, then you should say yes. There is always the chance that it won't work out, that you'll get on the job, that the accommodations you thought would help won't, and you'll be back to square one looking for another job. But I would say that as long as in good faith you believe that you can do it with those accommodations, it's appropriate to say yes. And again, that's something that an occupational therapist may be able to help you determine.

[20:37] Dr. Linda Bluestein: That's a good point about the occupational therapist, because I can also see where it could be challenging if you end up in a job that was not a good fit and it's a relatively short-term situation. Let's say you have two jobs in a row that are relatively short-term — do you have to disclose those? Do you have to include those on your resume if you're applying for another job? Because I feel like that could perhaps be taken against you.

[21:11] Tiffany Lee, JD: You really don't have to. What you choose to include on your resume is entirely up to you. If it was something very short-term, then it may not be worth putting on your resume. At the same time, if there are gaps in your resume, that may be something you'll be asked to explain during an interview. So I would be prepared for that.

[21:35] Dr. Linda Bluestein: Sure. Okay. That's super helpful. And what about getting a service dog? What advice do you have about that?

[21:43] Tiffany Lee, JD: So I actually had a service dog for many years — I don't at the moment. There are really three ways you can get a service dog. You can do the traditional route and go through a service dog school, an established school in an established program. You can work with a private trainer, or you can train a dog yourself. I went the self-training route because at the time — and this was quite a while ago — they really weren't training dogs for what I needed in schools. But I had a background in animal training, and I think the self-training method can be very difficult if you don't have some background in that. Not impossible, but it's usually harder than most people realize.
[22:26] When you work with schools, my main caution that I give people is this: if a school requires you to fundraise for them — which is different than paying a fee for a dog — if they require you to fundraise for their organization a certain amount to get your dog, keep in mind that if the relationship between you and that organization breaks down, that money does not come back to you because it was a donation to a nonprofit. So that's theirs, and that money is then gone as far as your ability to get a dog. So I do caution people that when they work with schools who have that model — and quite a few do — to remember that they're not paying for a service dog for themselves or asking people to contribute towards paying for a service dog. They are simply making a donation to an organization, and that does not guarantee at the end of the day that they will receive a service dog.
[23:35] It's also very important to read reviews of service dog schools. Unfortunately, as service dogs have gotten more common, more and more fraudulent schools have appeared who either take people's money and provide nothing, or they take people's money and provide an untrained or inadequately trained animal. So it's important to read reviews and to talk to people who have worked with that organization before. And if an organization is reluctant to put you in touch with any of their current handlers, that's a red flag.

[24:10] Dr. Linda Bluestein: That's really fascinating. I had no idea that there were organizations like that. Is there no kind of parent organization that regulates that industry?

[24:26] Tiffany Lee, JD: Not really. There are some voluntary organizations like Assistance Dogs International that schools can choose to be certified through, but that's not required, and many very good service dog schools are not. So while those things are in place, there is really no overarching regulation of service dog schools. The one small exception is that in California there are regulations that apply to guide dog schools, but not to other service dog schools.

[25:05] Dr. Linda Bluestein: So in some instances you're required to fundraise for that organization, but that money does not go towards your dog specifically or anything like that. And in other organizations, maybe you might have to directly pay for the dog. Is that what you're saying?

[25:22] Tiffany Lee, JD: And some organizations provide them for no or low cost as well. You will probably wait a bit longer for those, but it is certainly the less expensive option. And I would say that's less expensive than training your own, because in my experience there are a lot of unanticipated expenses that come with training your own dog as well. Not trying to discourage that, but it is usually harder than most people think.

[25:54] Dr. Linda Bluestein: Can you elaborate on that a little bit? Because I feel like that would be appealing to a lot of people, and people are going to listen to that and think, wait, I want to know more.

[26:04] Tiffany Lee, JD: Yeah. When you train your own dog, if you look at the rate of dogs bred for service dog schools that actually make it through the program and graduate as service dogs, it's a fairly small percent — and those are dogs that are specifically bred for characteristics they're looking for. When you get a dog, whether you adopt or purchase a puppy or however you do that, you have to have a plan in place if that dog doesn't work out.
[26:39] I have a dog right now. He's almost 14, and he was supposed to be my service dog. It became very obvious as we moved through his training that that was not the life for him. The life for him was sitting on the couch in the sun and not working. And if a dog is not motivated to work, is not interested in working, they won't work well. So you have to have a contingency plan — what are you going to do with that dog if it doesn't work out?
[27:18] Getting a dog can be an expense, especially if you're purchasing from a breeder, or even these days adoption fees can be quite significant from reputable rescues. And then it's a lot of time. If you work full-time, that's very difficult. If you have children, finding the time to do that is hard. If you don't have a background in animal training, the chances of you needing to hire a trainer at some point are really pretty high, and that is usually quite expensive as well.
And then there are other expenses — what if the dog develops a medical condition? Some service dog schools provide emergency aid in situations with one of their dogs, but if it's your dog that you're training yourself, that's entirely on you. There are a lot of complications that you have to think through.
[28:27] I don't regret my decision to train my own dog, but it was harder than I anticipated, and that was coming from a background with some training experience. Even if you've trained a pet, training a dog to the level of being a working dog is very different, because you have to have a dog that's essentially bomb-proof in public — one that can focus and perform their job with a massive amount of distractions, small children running up and grabbing them, construction noise, motorcycles going by, other dogs that might not be friendly. There's really a lot that goes into that training.

[29:17] Dr. Linda Bluestein: Wow. And if you get a dog from an organization, when you actually receive that dog, is most of that training already done? Can they already avoid those distractions and that kind of thing, or do they still need a fair bit of training after that?

[29:33] Tiffany Lee, JD: Most of that training should already be done, but it does have to be maintained. So training never really stops, but the fundamentals should be there. The dog should be safe to use in public, should be able to focus and not get overly distracted. But there is ongoing work. And if you get a dog from a school, usually they will train you to train the dog and to keep up their skills as necessary — and a lot of times that means going to the training center for sometimes even two to three weeks. Sometimes they'll send a trainer and the dog to your home. It does take some time, but usually they do a fairly good job of making sure those basic skills — what are called public access skills, in other words what a dog needs to do to be a good citizen in public — along with whatever tasks they're trained to do, have already been well established through training.

[30:39] Dr. Linda Bluestein: And if you're training the dog yourself, how do you know what to train them, and at what point they've completed their training? How does that work?

[30:54] Tiffany Lee, JD: Let me answer the second part of that first. There is no requirement, no registry, no test required by law for your dog to be a service dog. Your service dog has to meet a couple of basic criteria to be covered by the ADA. One is that it has to perform tasks or do work related to the person's disability — and that is the fundamental test of a service dog versus a pet or an emotional support animal or a therapy dog. That is the task or work training.
There are also a number of different public access tests that you can find online that give pretty much a checklist of what your dog needs to be able to do in public to be adequately well-mannered to work in a public environment. Again, those are not required by law, but they are a good kind of minimum standard that you should be aiming for — and I do want to emphasize minimum standard. In most cases you'll want to go beyond that.
[32:11] And it's not always fun to have a dog with you everywhere you go. People think it'll be great, but it's sort of like having a three-year-old with you everywhere you go — a useful three-year-old, but still a three-year-old. Because in addition to your own needs, now you have to worry about the needs of the animal that's with you.

[32:27] Dr. Linda Bluestein: That's really interesting. And how would somebody find out how to do this training and/or how to hire somebody to help them with it?

[32:51] Tiffany Lee, JD: Doing it yourself, there are programs online that you can look at that cover dog training. Personally, I'm a positive reinforcement trainer — I follow that methodology in all the training I do. Really good fundamental dog training skills apply regardless of whether you're training a service dog or any other type of dog. Good training is good training.
[33:19] As far as hiring a trainer, I look for the same things. I look for a trainer with a similar philosophy to mine, methods I'm comfortable with. I want to talk to some clients to see what their experiences have been. If they're a good trainer, I may not be particularly concerned about whether or not they've worked with a service dog before, because most trainers are going to be able to figure out how to teach you the necessary service dog skills. In some cases with alert dogs, though, you may want to work with a trainer who has specifically worked with those, because that is a little bit beyond teaching mechanical skills.

[34:14] Dr. Linda Bluestein: Okay, can you describe what alert dogs are?

[34:18] Tiffany Lee, JD: Alert dogs are dogs that alert to either the presence or the impending presence of a medical condition. The most commonly known are probably seizure alert dogs — dogs who can detect seizures before they happen. Whether or not that's something that can be trained has been debated. Some dogs have the ability to do that. There are people who claim it can be trained, but there's been some debate about whether or not that can actually be taught or if it's somehow innate.
[34:56] Diabetic alert dogs are also fairly common — they alert to high or low blood sugar readings. You have to be very careful with trainers who claim to be able to provide that. A lot of the fraudulent schools that have been the subject of lawsuits have been for alert dogs.
[35:15] And more and more often now I'm seeing people who are having good luck with POTS alert dogs, who alert to sudden increases in heart rate and can then alert the handler that they need to take steps to avoid passing out.

[35:34] Dr. Linda Bluestein: That's just amazing to me that dogs can sense an impending seizure, or high and low blood sugar, or changes in heart rate. That's really incredible.

[35:46] Tiffany Lee, JD: Yeah, it is. None of my dogs have ever really picked up on my heart rate changes, but it's amazing what some dogs can do.

[35:58] Dr. Linda Bluestein: I've personally witnessed a service alert dog — at least there's one specific example where the person's service dog literally saved her life. I was at a conference, and she was laying on the floor. At first you could see her eyes were open and she was just laying there calmly, and the dog was right next to her, also calm. And then all of a sudden the dog started barking and she had stopped breathing. They asked if there was a doctor — it was a medical conference, but I was the only one who responded. Now I'm an anesthesiologist, so it was also appropriate for me to be helping manage this person's airway. It was actually an EDS conference.
[36:33] It was so interesting to me that this dog really could detect when — obviously I don't know exactly the time frame of when she stopped breathing versus when the dog started barking — but she was able to be resuscitated and she was fine. Yeah, it's really an amazing situation.

[36:58] Tiffany Lee, JD: A good thing you were there as well.

[37:01] Dr. Linda Bluestein: Turns out it was, yes, for sure. So I want to move on to a slightly different topic — people really struggling with getting disability or working with, for example, a disability lawyer. One of the questions that was asked was, how does someone advocate for themselves with unresponsive disability lawyers? I have actually seen this. I have patients who have asked me to fill out disability paperwork and they'll tell me that they've really struggled to get the attention they need. Do you have any thoughts about that?

[37:34] Tiffany Lee, JD: Personally, when I come across an unresponsive lawyer, my first step is usually to switch lawyers, because I've found that unresponsive lawyers tend to stay unresponsive. That said, I know that's not an option everyone always has.
[37:51] If you're having trouble reaching the lawyer, reach out to their paralegal or legal assistant or secretary, because a lot of times they may be able to get the attention of the attorney better than you might be able to. But definitely don't give up. You don't necessarily want to be calling them two or three times a day, but if you're not hearing back, you do need to continue to reach out regularly because they should not be ignoring you. That would be considered very unprofessional.
[38:32] Unfortunately, sometimes it's very hard to get a response. My best luck has been with reaching out to paralegals and legal assistants.

[38:44] Dr. Linda Bluestein: Sure. And what if somebody gets denied disability benefits the first time around?

[38:52] Tiffany Lee, JD: That's pretty common. You should almost go into the process assuming you're going to get denied and planning to appeal. The first thing you can do is request reconsideration. If that does not result in a positive outcome, you'll want to request a hearing. These hearings are with what's called an administrative law judge — judges not in the regular courts but who work with agencies like Social Security to help determine these cases.
Your chances at a hearing are definitely better if you have an attorney or a professional advocate. I know that's not possible for a lot of people who are applying for disability for financial reasons, but sometimes you can find an advocate who may work on a sliding scale or pro bono basis, and if you can find somebody, that's a good idea.
[39:49] Beyond the hearing level, there are additional appeal steps you can take, but at that point we're starting to talk about years. So it's very important when you start out that you have all of the paperwork that you need. When you file for reconsideration or an appeal, provide as much supporting documentation as possible because that will definitely improve your chances. The previously denied cases that get approved on appeal during the disability hearing — it depends a little bit on the state — but it's usually somewhere around 50%. So it's certainly worth taking that step and going to a hearing.

[40:39] Dr. Linda Bluestein: I had a patient not too long ago who went to the hearing process and did get approved after the hearing, and did get retroactive payments. Is that a common thing?

[40:49] Tiffany Lee, JD: Yes, retroactive payments are pretty much always given back to the time of the original filing.

[40:56] Dr. Linda Bluestein: Okay. So even if it takes years — and obviously you're probably really struggling during that time — it's reassuring to know that if it does get approved, you will probably get retroactive payments.

[41:09] Tiffany Lee, JD: Yes. That's true with VA disability as well.

[41:10] Dr. Linda Bluestein: Okay. This was an interesting question — somebody asked what legal recourse there is for the undertreatment of pain.

[41:26] Tiffany Lee, JD: Unfortunately, not much. There were some cases in the late '90s and early 2000s that looked like they might be giving us a legal pathway and a legal theory for that, but that really fell apart after about 2005. We're really not seeing any success with legal cases for undertreatment of pain. It's very difficult to show that that is malpractice, especially with the opioid epidemic. As somebody who's been undertreated for pain, I definitely sympathize with that, but there's not a lot of legal recourse.
[42:09] The cases that were successful in the past have been end-of-life care cases, and at least one of them didn't pursue it as a malpractice case — it was pursued as elder abuse for withholding end-of-life pain medication. And that was only possible — this was in California — because of the specific nature of how the California elder abuse law was written at the time. So really, unfortunately, there's not much.

[42:39] Dr. Linda Bluestein: And I do want to point out that while opioids are appropriate in some cases, there definitely are other treatments for pain. It's so frustrating to me how little education there is about this in medical schools. I have given some lectures in medical schools on this particular topic, but unfortunately a lot of physicians are just not adequately educated and/or don't have enough time to enact those kinds of treatments. There are multiple ways that we can address pain, but yeah, it is unfortunately a big problem.

[43:14] Tiffany Lee, JD: Yeah. And it is an ethical issue as well with the undertreatment of pain, but there's not a lot we can do on the legal front right now.

[43:26] Dr. Linda Bluestein: Yeah, and the end-of-life piece — I definitely know of other cases about that, but it's really, really tragic. What about — somebody asked about the best possible accommodations for productivity standards?

[43:44] Tiffany Lee, JD: That's really going to depend on the nature of the job and the nature of the individual's needs. Unfortunately, I can't really give a lot of specifics in that regard. Again, I would recommend talking to occupational therapy and physical therapy and seeing what's going to work best in that individual case. That tends to be very situation-specific.

[44:03] Dr. Linda Bluestein: Okay. And what about if somebody has medical records that contain inaccuracies, or they feel like they've been gaslit through their medical records? Are there things they can do?

[44:18] Tiffany Lee, JD: There are. You do have a right to request an amendment of your medical records. This is actually part of HIPAA, which people think about mostly for privacy, but it impacts your control of your medical record as well. Usually what you do is let them know — sometimes there's a form available depending on who is maintaining those records — that you have a disagreement with that record, and they are required to investigate that and get back to you with their determination.
[44:59] Now, if they determine that in their opinion it's correct, you can request to have your letter of disagreement put in your medical record and attached to that specific record, so that in the future if somebody is looking at those records they can see that you raised an objection to what was stated. My experience has been that a lot of times you don't end up getting things changed, but it's always good to at least have that note in there indicating that you expressed disagreement — and you do have a right to request that.

[45:49] Dr. Linda Bluestein: Okay, and if they do agree and change it, do you know how that works?

[45:51] Tiffany Lee, JD: They should amend the record to whatever is appropriate.

[46:04] Dr. Linda Bluestein: Okay. And then another question was, how can someone get insurance to cover, in quotes, "zebra things"?

[46:15] Tiffany Lee, JD: Yeah, that can be difficult. The more documentation you have, the better, for whatever you're requesting. And having your doctor strongly on your side for whatever that request is will be very helpful as well.
[46:32] If something is denied by insurance, you do have the right to request an additional review. One important thing is to find out why they declined it, so that you know what you're actually trying to address when you appeal. And it's one thing that can be difficult when you're putting together an appeal letter — staying objective — because obviously this is something very personal and can be very emotional, since it's something you need to live your life. So have somebody read over that appeals letter before you send it.
[47:17] Have as much factual evidence as you can, as much documentation as you can. You can request internal reviews — usually there are two levels of that for most insurance, including Medicare and Medicaid. And then most times you can also request an external review, with someone not affiliated with the insurance company. How that works will depend on your state to some extent, but there are definitely ways to appeal and request consideration.
[48:01] It doesn't always work. It's worth trying again later if you can get more documentation or more evidence supporting what you're requesting. If you're denied once and you can find something additional to support it, it's certainly worth trying again.

[48:22] Dr. Linda Bluestein: Okay, and how do you know when it's time to get an accommodation like a mobility aid or apply for disability?

[48:27] Tiffany Lee, JD: A lot of that's very personal because people have a lot of emotional responses to using mobility aids. I started using a wheelchair part-time about — I guess it's been about 10 years ago now. Prior to that I used a service dog for most of my mobility, and for me the consideration was, will this let me live my life the way I want to? As soon as that answer was yes, that's when I felt it was the right time for me to start using a mobility aid.
[49:10] Applying for disability has additional considerations because it also impacts your personal finances. There's a maximum amount of assets you can have to go on disability, which is very low, and that has a pretty significant impact on the way your life is going to go. The amount of work you can do — you can work some, but you can't make more than a certain amount per week, and you can't ever have more than — I think it's $2,000 in assets. That essentially requires that you not work and live in some degree of poverty. So that's something you have to take into consideration. Are you at the point where applying for disability is now necessary?
[50:04] It can also be more difficult, unfortunately, if you're married, because your spouse's income will be taken into consideration as well. There is essentially a marriage penalty on disability. A lot of times that's something best considered in terms of your personal circumstances and looking towards the future — are you in a situation where it's very unlikely that you'll be able to support yourself without disability benefits in the near future? And if that's true, then it may be time to apply.

[50:47] Dr. Linda Bluestein: I just want to come back to that. So you cannot have more than $2,000 in assets? Does that include where you live, your car?

[50:59] Tiffany Lee, JD: Generally, your house does not count, but it may include your car if it's above a certain value. It makes it very difficult to have a savings account or to plan for the future or to plan for retirement. It's really a major ethical issue in the way our disability system treats people with disabilities, because it says essentially you have to be this level of impoverished to qualify, and you can't ever make your life situation better without risking your healthcare and the income that you're relying on.
[51:41] You probably won't be able to — if you're single — ever be able to marry. It's really sad, the way the system treats people with disabilities.
[52:02] I saw a college student once who had been working on his car for years — really nice car, he'd done a lot of work on it — but he was getting ready to graduate from college. He was probably going to have to go on disability because he had not been able to find employment due to his disability. And the car was being held against him as an asset. He had to get rid of it.

[52:27] Dr. Linda Bluestein: Wow. So there's a lot in there that I was not aware of, and I really appreciate that excellent information — although it's obviously really tragic how a lot of that is structured. If you had a magic wand, how would you change our disability structure in the US?

[52:46] Tiffany Lee, JD: I'll be honest, I don't really know of any other place that does it any better. I have always liked what were called Ticket to Work programs, which were programs that sort of gradually pulled back benefits as you began to earn more. Right now we have basically an edge-of-the-cliff system — you make a dollar over that amount and you're cut off completely.
[53:11] And especially for somebody who requires a lot of medical assistance and they're using Medicare — maybe they need personal care attendants or other higher-cost medical services — suddenly cutting them off from Medicare if they're not working enough to have benefits essentially prevents them from working, because they can't risk those benefits. So even if they could be progressing into employment and making progress, they're forced not to because they have no way of tapering off of disability benefits as they improve their earning capability and their ability to pay for their healthcare themselves. Because a lot of times if you're starting back into the workforce and you're having to do so gradually, you're going to start out part-time and probably without benefits.

[54:17] Dr. Linda Bluestein: I like that description of edge-of-the-cliff versus — did you call it Ticket to Work?

[54:22] Tiffany Lee, JD: That was actually the name of a program that was put in place for, unfortunately, a limited period of time. The idea was to encourage people to go back into the workforce to the extent they were able without having to risk all of their benefits if they reached a certain point.

[54:47] Dr. Linda Bluestein: Which I think is important because I think so often we can get meaning from our work and so many other valuable things — we feel purpose. But now that you've described it that way, I can really understand what a struggle that would be for people. Like you said, if you make a dollar more, to lose your health insurance and your disability payments would be obviously hugely impactful on your life.

[55:16] Tiffany Lee, JD: Yeah, it can be catastrophic. I'm aware of at least one attorney who, due to the significant nature of his disability, was never able to practice for money. He volunteered his entire career — he never once earned a dollar from his legal practice. And that was because he required near-round-the-clock personal care attendant assistance due to the significant nature of his disability.

[55:51] Dr. Linda Bluestein: But he was able to do some work, just in a volunteer capacity.

[55:56] Tiffany Lee, JD: Mm-hmm. If he had charged what an attorney — especially later in his career with his level of experience — he wouldn't have been able to work more than an hour or two a week without going over that threshold.

[56:10] Dr. Linda Bluestein: Right. One of the other questions was, as a current law student, how can I get a course like this in my law school?

[56:14] Tiffany Lee, JD: A lot of that's going to depend on the availability of somebody to teach it. Probably a good first step would be to determine interest. If you can get a group of students who are interested in having a class like that, take that to your academic dean or whoever plays a similar role in your law school and present it to them. You'll probably have better luck asking for something like a seminar, which is usually a two-credit-hour class, as opposed to what's often called a doctrinal class, which is usually three credit hours and has an exam at the end. Seminars usually result in a paper, and so it can be easier to pursue it along those lines, at least initially.
[57:13] Personally, I find that's a better structure for that type of class anyway, but that may simply be personal preference. But a lot of it comes down to being able to find somebody who is willing to teach it in your area, because a lot of times they will be like me — an adjunct and not a full-time professor. If you have somebody who teaches healthcare law, you may approach them to see if that's something they'd be willing to teach if you could get enough interest together, because there does tend to be quite a bit of crossover between those two topics.

[57:53] Dr. Linda Bluestein: Okay. We're down to the last couple of questions. One question was, do you believe hypermobile EDS is a progressively disabling condition?

[58:06] Tiffany Lee, JD: That seems a little bit more like a medical question.

[58:08] Dr. Linda Bluestein: Yeah, and I will actually address this question on an AMA — ask me anything — episode, so I will provide my own answer on a separate podcast. But I was curious if you had any thoughts.

[58:24] Tiffany Lee, JD: Personally, I can really only speak from my personal experience and the experience of friends of mine who also have EDS. I have found that my injuries accumulate. I don't know that my hypermobility is necessarily progressively worse, but the number of injuries I've acquired over time has increased some of my limitations. And some of the problems I've had with my joints — and I know that's also been true for a few of my friends, that as they have done things that have resulted in injuries, those injuries themselves have caused additional symptoms and limitations. So in that sense, I think it's at least cumulative, if not strictly progressive.

[59:12] Dr. Linda Bluestein: Okay. And the last of the social media questions — and I know we talked before we started recording that this could be an entire episode, and perhaps we will do that if there's enough interest. It would actually be great for people to give us feedback on that if they think it would be very beneficial — what makes disaster and emergency response accessible?

[59:35] Tiffany Lee, JD: There are a lot of things that go into this. The most important thing is for people's functional and access needs to be met. That includes things like transportation availability in the case of a mandatory evacuation, because not everybody can drive — and that's not just people with disabilities either; it could include other people who simply don't have access to a vehicle. It includes accessible communications, so things presented in audio and visual and sign language format. It includes emergency shelters that are accessible and not segregated — in other words, people with disabilities should not all be sent to one specific shelter that is only for people with disabilities, because you should not be separating them from their families. They should be served adequately in any emergency shelter, just like anybody else would be.
[1:00:39] It's having the ability to manage somebody who may have a medically necessary diet or who may need certain medications in an emergency shelter environment or during an evacuation. It's things like, do you have provisions to care for service dogs during an emergency? Most people will not evacuate without their pets, much less without their service animals.
[1:01:09] There's so much that goes into doing this well. There have been two major lawsuits about this — one in New York about Hurricane Sandy and one in LA — that have looked at the fairly overwhelming failures of local government entities and emergency response organizations at considering the needs of people with disabilities, and kind of making that a last-minute afterthought. As a result, people with disabilities do tend to be disproportionately negatively impacted by both natural and man-made disasters.
[1:01:54] But there are simple things too. A lot of times people with disabilities aren't included in fire drills — they're just told to wait because it's just a drill. But if you never practice, you won't know how to do it when it's real. And this is true in the educational system as well: children won't be included in various drills, and may then be left during an actual emergency because nobody's ever practiced what to do.
[1:02:26] It's a huge subject. I worked in the disaster response field for a few years prior to law school, and we've come a long way, but there's still a long way to go on making it accessible to people with functional and access needs.

[1:02:52] Dr. Linda Bluestein: Okay, so we're about to get to the hypermobility hack that you would like to share, but before we do, do you have any final thoughts, or did I miss any questions that you think I should have asked?

[1:03:04] Tiffany Lee, JD: No, I don't think so. I think that's covered it fairly well. Of course, I can't give advice for any specific situations, but hopefully that's been enough of an overview for people to get started.

[1:03:20] Dr. Linda Bluestein: I think this is great information. Okay, so can you tell us one or more of your favorite hypermobility hacks?

[1:03:30] Tiffany Lee, JD: My favorite one is actually behind me if I can get my finger in the picture right here. This is my walking desk. I have a lot of issues with my hips and low back, and sitting for long periods of time is not good. Standing for long periods of time is also not good. So I went to a used sporting goods store and bought the cheapest treadmill I could find — it is very cheap and in not particularly great condition — and I bolted an old bookshelf shelf to the arm rails that come out from it, and I turned that into a walking desk.
[1:04:13] So I can walk at even 1 mile an hour. That's enough — if I keep my legs moving, that's generally enough to keep my POTS happy, and it keeps my back and my hips moving, avoiding some of the issues that I have with sitting for long periods. That has made a huge difference in my work tolerance and in my pain levels. So I sort of rotate between my chair, my walking desk, and sitting propped up in bed. That's been especially recently one of the biggest things that has made a huge difference.

[1:04:58] Dr. Linda Bluestein: I love that. And are there certain things that are either easier or harder to do with the walking desk?

[1:05:06] Tiffany Lee, JD: I can't really do any type of video conferencing on it because the problem with cheap treadmills is they're loud. They make specific walking-desk treadmills that are quieter, but they're also at a much higher price point. If you tend to get motion sick, it may not work so well to do detail work while you're walking. But I've found that using a full-size keyboard as opposed to my laptop keyboard — one that doesn't require quite as much fine motor skill — and using an actual mouse instead of the trackpad on my laptop can help, because sometimes really fine detailed movements can be harder when you're walking. Most people are going to bounce up and down a little bit as they walk, so that can be a little bit more difficult. But I've found a few workarounds, and it does take some practice.

[1:06:06] Dr. Linda Bluestein: And how many minutes or hours would you say on an average workday you would be spending using your walking desk?

[1:06:09] Tiffany Lee, JD: Probably about one to two hours. It's also been fairly good for my fitness level. It's not quite to the point of maybe being considered actual cardio exercise, but it's movement.

[1:06:33] Dr. Linda Bluestein: It's movement. Yeah. Movement is so important. That's fantastic. Is there a way people could connect with you if they're interested?

[1:06:48] Tiffany Lee, JD: I am on Instagram at failure_option. I'm not in practice — I'm strictly in the academic world right now — so I cannot consult about individual cases. At times I can provide resources, and I'm happy if people reach out — I may be able to provide links or resources — but I can't provide any personal consultation.

[1:07:18] Dr. Linda Bluestein: Sure. Well, this has been such a great conversation, and I think a lot of people are really going to find it beneficial. You have been listening to the Bendy Bodies with the Hypermobility MD podcast, and my guest today was Professor Tiffany Lee. Professor Lee, thank you so much for coming on the Bendy Bodies podcast today and sharing your incredible knowledge with us.

[1:07:41] Tiffany Lee, JD: Thanks for having me.

[1:07:45] Dr. Linda Bluestein: Thank you for listening to this week's episode of the Bendy Bodies with the Hypermobility MD podcast. Visit our new website at bendybodiespodcast.com where you can now view guest profiles and show notes with links to products and journal articles. Leave me a comment, sign up for updates, leave a review or a voicemail, and access the podcast on your favorite player, all directly from our website. You may hear your voicemail in a future episode where we answer your question or dive into your gracious feedback.
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