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This page is a part of our special on the economics of disability. Listen to the podcast here and read this glossary of terms we used in our coverage throughout the show. Below is a lightly edited transcript of the entire episode.
Lizzie O’Leary: Look around you in America. Roughly one in five of us lives with a disability and every single one of those people is carving out an economic life.
Speaker 3: I was a small business man and I lost everything.
Speaker 4: I want my pot of gold at the end of the rainbow.
Speaker 5: I began to love my body and how it moved. And yeah, it worked a little differently for me but that was okay.
Lizzie O’Leary: I’m Lizzie O’Leary and this is a Marketplace Special on the economics of disability. Many people who’ve worked in the past but can’t anymore get social security disability insurance, but this show is less about government programs and more about what it means to live with a disability in America today. We’ve divided the show into three sections, education, work and healthcare and I’ll have co-hosts for each one. We know we can’t cover everything today, especially as it relates to aging. Where possible, we’ll point you to other Marketplace stories and resources at Marketplace.org.
We start with education and schools with my cohost for this section.
Maria Town: Hi. I’m Maria Town. I serve as the Director of the Mayor’s Office for people with disabilities in the City of Houston. I’m a wobbly person who has cerebral palsy and one of my first experiences advocating for myself was during my IEP meeting at school. IEP stands for Individualized Education Program.
Lizzie O’Leary: How public schools educate children with disabilities is governed under a federal law that covers 13 disabilities.
Maria Town: And a case about that law and what students are entitled to went all the way to the Supreme Court last year. The court’s ruling changes what schools and districts are legally obligated to provide.
Lizzie O’Leary: To find out what this means for parents and kids, I went to meet a family in South Brooklyn, in the heart of the nation’s largest school district.
Alana Philip: Morning, come in. This is Aiden.
Lizzie O’Leary: Hi Aiden, I’m Lizzie.
Aiden: Hi Lizzie.
Lizzie O’Leary: In a bright orange shirt, 8-year-old Aiden’s ready to show off what he’s learning in 3rd grade.
Lizzie O’Leary: Bonjour. French, his mom, Alana Phillip remembers meeting his French teacher.
Alana Philip: I said, French? He’s studying French? I figured if I’m having this much difficulty in the other English-based subjects, surely this is just another layer of complication.
Lizzie O’Leary: Because in pre-K, Aiden was diagnosed with a subtype of autism.
Alana Philip: One other thing that really comes out clearly is, it seems as though this thing is going to take a lot of money. I don’t have it.
Lizzie O’Leary: There was the occupational therapist, so Aiden could learn to hold a pencil. The reading program at $150 bucks a session and-
Alana Philip: A private neuropsych eval and that costs $4500 dollars out of pocket.
Lizzie O’Leary: In New York City, within 60 days of requesting an evaluation, parents, teachers and other school staff are supposed to hash out and implement a student’s Individualized Education Program, or IEP. When that IEP is written, under federal law it’s the document that lays out exactly what services a student with disabilities gets.
Phillip, who’s an educator herself, made sure Aiden got occupational, physical and speech therapies at school.
Alana Philip: I’ll tell you what I had to really fight for was one-to-one tutoring and extra support.
Lori Podvesker: As we know, not all schools have the same resources.
Lizzie O’Leary: That’s Lori Podvesker. She’s an advocate at Include NYC, a nonprofit that helps students with disabilities access services. She says schools sometime make recommendations based on what they can give, not necessarily what students need. In the past, New York students with disabilities were often taught separately in their own classes, but then in 2010-
Lori Podvesker: They changed the funding formula.
Lizzie O’Leary: Now the district gives schools more money if they keep kids with disabilities in mainstream classrooms. The idea being that if you educate students with disabilities alongside their peers, they’ll do better academically and socially. But is just that enough?
Again, Lori Podvesker, who’s a proponent for these kinds of classrooms.
Lori Podvesker: My gut reaction is no. Because there’s still a huge achievement gap between students with disabilities in New York City and general education students.
Lizzie O’Leary: There’s also a gap between what kids are legally obligated to get and what schools actually give them. New York City schools spent $3.7 billion on classroom instruction for special education students last year, about 30% of such spending. And they’re doing better at getting students classroom services than ever before. But still, 1 in 4 kids don’t get the full services they’re legally entitled to.
Two families recently] sued the district. In a statement the New York City Department of Education says, they ensure students with disabilities have access to education in “the least restrictive environment.” And they say they try to resolve concerns as quickly as possible. Nationwide, a lot of families have sued. Like that case we mentioned earlier that went to the Supreme Court.
Jack Robinson represented the Colorado family in it.
Jack Robinson: You have this inherent tension between what the parents want and believe is necessary for their child to succeed, and what the school district is willing to do, whether it’s financially or just conceptually.
Lizzie O’Leary: The Supreme Court ruled unanimously that just access to education is not enough. Chief Justice John Roberts wrote, schools need to offer services so students “make progress” appropriate in light of the child’s circumstances.
Jack Robinson: For the first time children with disabilities are entitled to more than just the bare minimum.
Lizzie O’Leary: The federal law, which gives students with disabilities rights to an education, also promises federal funding to cover 40% of extra special education costs. Today only 14% of those funds have come through, leaving it up to states and districts to figure out how and what they can pay for. Since the Supreme Court ruling, the Federal Education Department released guidance to schools clarifying their increased duties under law. What we don’t know yet is how that will play out for students like Aiden or anyone else with a disability.
Alana Philip: 70 divided by 10. 1 multiplied by 10 will give us 70. Correct. Good boy. High five.
Lizzie O’Leary: For now, it likely still means a lot of hard work.
Lizzie O’Leary: You’re listening to a Marketplace Special on the economics of disability, and I’m back with co-host Maria Town.
Maria Town: Thanks Lizzie. In the past 30 years, the education system has changed a lot for students with disabilities.
Lizzie O’Leary: The number of people with disabilities in mainstream classrooms has more than doubled, according to the National Center for Education Statistics.
Maria Town: And school budgets often haven’t been able to keep up with students’ needs. Whether that’s because of budget cuts or funding tied to property taxes, which vary from neighborhood to neighborhood.
Lizzie O’Leary: And that can create issues for students seeking accommodations. Like our next guest Elijah Armstrong.
Maria Town: Armstrong has epilepsy. During his junior year of high school, he began to have seizures that he says were triggered by flickering lights in his AP Calculus classroom.
Lizzie O’Leary: After several trips to the hospital, failed classes, and a lawsuit, Armstrong settled with Duval County Public Schools, his district in Jacksonville, Florida, and received $80,000 dollars.
Maria Town: Armstrong is now a rising senior at Penn State University.
Lizzie O’Leary: Welcome to the show.
Elijah Armstrong: Thank you for having me.
Maria Town: So, some of the problems that you had are issues that a lot of student face every day. Why do you think things like this are happening? What’s going on here?
Elijah Armstrong: I think part of it is that there are some people that don’t understand disability law. Like, I got a lot of backlash suggesting that I was trying to get special treatment; not understanding that it was literally an access issue. I was not able to be in this classroom and be healthy. And a lot of people didn’t understand that and thought I was seeking special treatment. There was a lot of criticism that I caught that, “Oh, Elijah just doesn’t want the rigor of Stanton.” And they responded multiple times to me saying, “For the integrity of the program.”
And I want that difficulty. I came to this school specifically to be in that Ivy program, to graduate doing the work that the rest of the student did. Accommodations don’t change that. My ability to do AP Calculus is not impacted by my ability to handle flashing lights and that shouldn’t be a requirement of the class.
Lizzie O’Leary: You know, when I listen to you, this is Lizzie, when I listen to you talk about this – obviously it took a sort of mental and emotional toll to keep slogging through this fight. I guess I’m wondering also, you know, since we’re doing an economics show here: do you know what this cost you and your family to keep pursuing a legal remedy til you won?
Elijah Armstrong: Oh man, the cost to me was utterly extreme. I don’t have a ballpark estimate for you but I can tell you some of the bigger costs. ‘Cause I grew up … First of all, I grew up with a single mother. So you have to understand that the lawyers that we got, luckily the trial lawyer, Aaron Bates was great enough to be willing to do the case pro bono and I’m very thankful for that, but we had to get other lawyers before that in order to try to get an IEP.
So that was out of pocket. My mother had to miss a lot of work to come drive me from school to the hospital. And since that was every other day, it’s not like she has the kind of flex time where you can just say, “Oh, well, every other day this week, I’m just going to be taking off.” The hospital bills, this was literally – I was in the emergency room two to three days a week. So those things stacked up. That was very, very expensive and I know there are still some aspects of this, even though it started my junior year of high school and I’m going into my senior year of college, I know there are still some aspects of that we’re still trying to pay off because it was so very expensive from our perspective.
Maria Town: You were able to settle with your district but a lot of people aren’t able to litigate this kind of thing at all.
Elijah Armstrong: Honestly, I wouldn’t have graduated high school. There was no other option. It was, you fight or you fail out and I know I didn’t have the resources to do that. I didn’t have the money to be able to keep bringing in lawyers and talking to the district, and I really do wonder how many other student there are that because they don’t have the know-how or the wealth necessarily to be able to pursue a litigation as well… ‘cause this always wasn’t, like, a brief, “Let me grab this lawyer. Now everything’s smoothed out.” They were retained for at least a year and a half.
I really do think about the number of students that are in this exact situation that need a simple accommodation that they are legally entitled to have. I think there’s a subset of students with disabilities that aren’t served by the educational system, and I think that leads to a lot of them ending up dropping out.
Lizzie O’Leary: Elijah Armstrong, thank you so much for coming on to talk with us.
Elijah Armstrong: Thank you for having me on the show.
Lizzie O’Leary: Thanks to my education co-host Maria Town. And one note on language. We know it’s sensitive, so we’re using terms that the people we’ve spoken to prefer. We’ve also got a glossary of terminology on our website, Marketplace.org. Stick with us.
Lizzie O’Leary: You’re listening to a Marketplace special on the Economics of Disability. I’m Lizzie O’Leary, and I want to introduce my co-host for this segment.
Katie Savin: Hi, I’m Katie Savin, and I have a few disabilities, including Ehlers-Danlos syndrome. I’m working on my PhD right now in the social welfare department at UC Berkeley.
Lizzie O’Leary: And now we’re going to focus on the subject of work. A lot of people go to work with what we call an invisible disability, with few or no outward signs of the fact that they might struggle with some aspects of a job.
Katie Savin: Yet it affects their employment opportunities, their sense of identity, and, obviously, their financial prospects.
Lizzie O’Leary: Like for this listener, who wrote in to tell us about her experience.
Carol Phillips: My name is Carol Phillips, and I live in Silk Hope, North Carolina.
Katie Savin: Phillips has a mild traumatic brain injury from hitting her head. This slowed down her thinking process.
Lizzie O’Leary: After the accident, she went back to work, and things were fine, but when she got transferred to a different office, her bosses were less understanding.
Carol Phillips: In my new job, I was a technical writer. One of the problems I have is word retrieval, so I would use the wrong word, “what” instead of “want,” that sort of thing. So one of the things that I really asked for was somebody to just proofread my work, and my boss said no. If I had had accommodations that I’d asked for, my job performance would have been better, and I think that I would have stayed employed. I certainly wanted to stay employed. The only choice I had was to go out on disability or be fired, and disability was a better choice. But it’s a real decrease in lifestyle and everything else. I felt literally worthless, absolutely worthless.
Lizzie O’Leary: Today Phillips is a published writer.
Katie Savin: Sometimes a person who struggles with certain aspects of a job just hops from one gig to the next, over and over, like our next contributor.
Valentino Perez: My name is Valentino Perez. I live in Bronx, New York. I have a learning disability, ADHD with no hyperactivity, and dyslexia.
Lizzie O’Leary: Perez has worked in lots of places: a boarding school, tutoring programs, a factory, a card-writing company. At that last job, he got fired for not being punctual, which he says was the result of his ADHD.
Katie Savin: Perez started waiting until after he was hired to ask for accommodations for his learning disability, but he says that small changes that benefit employees with disabilities could have far-reaching benefits.
Valentino Perez: Even though I have a reading disability and what I request is asking something, no one can’t tell me that it does not benefit more people than just me. It could blend into a business so seamlessly that people would be like, “that’s a cool feature – I actually might want to try that!” And before you know it, it doesn’t become a disability services request, it becomes a just an everyday side feature like text-to-speech has become on devices. You don’t know it exists, but it exists.
Katie Savin: Our next guest is an academic researcher and uses a text reader also, when she can.
Carry Croghan: My name is Carry Croghan, and I am severely dyslexic. For many years, I didn’t ask for reasonable accommodation at my workplace, but the more and more communication was more written communication, it really started to put me at a disadvantage. So finally, I got a text reader. As well as being a mathematician, a statistician, I have a Master’s degree, but I read and write at a fifth-grade level. Reasonable accommodations aren’t special treatment; they allow us to play on an even field. They just allow the employee to reach their potential.
Lizzie O’Leary: That was Carol Phillips, Valentino Perez, and Carry Croghan sharing their experiences having invisible disabilities in the workplace.
Katie Savin: We want to add that there are many kinds of experiences with invisible disabilities, including mental health. Thanks to all of our listeners who wrote to us with comments and experiences for this special.
Lizzie O’Leary: And, of course, there’s another side to this, that of employers. We’ll hear more about that on next week’s show. And the conversation continues on our website, marketplace.org where you’ll find all the stories from this episode.
We just heard from listeners about their experiences with disabilities at work. And we want to talk about the legislation that protects people with disabilities, in society and at work, from discrimination.
Katie Savin: The Americans with Disabilities Act, or the ADA, was made federal law in 1990, and it’s the primary civil rights law that covers disabled people. In short, it’s designed to level the playing field with non-disabled individuals. So explains Luticha Andre Doucette, an innovation specialist with the city of Rochester, New York.
Luticha Andre D: So the structure of the law is about making sure that spaces that are accessed by the public, right, are also accessible by those who have some form of disability.
Katie Savin: That’s the law, but then there’s the enforcement.
Luticha Andre D: Either the individual, the disabled individual, has to file a complaint with the Department of Justice. Or, a civil lawsuit. Those are the two methods of enforcement.
Lizzie O’Leary: The ADA was designed to prevent discrimination against people with disabilities-
Katie Savin: But Doucette says enforcement of the ADA comes with challenges.
Luticha Andre D: Any law that has some sort of really rigorous legal process as its form of enforcement automatically builds inequity into that law.
Lizzie O’Leary: Let’s dive into more of our conversation on the ADA, enforcement, and the workplace with Luticha Andre Doucette.
Katie Savin: I’m curious, as you’re talking about a way to pursue a lawsuit, sort of going back to the language of the ADA, a lot of the language we know around the disability rights are pretty vague, so things like a reasonable accommodation, an undue burden. These are not always clearly defined. Have you seen the vagueness of the wording create issues?
Luticha Andre D: Well, you know, they’re vague for a very kind of specific reason, right. When you talk about people with disabilities, what does that actually mean? Are you talking about a deaf person? Are you talking about a blind person? Are you talking about a wheelchair user? So because disability covers such a broad range of different types of people, when you make a policy it has to be vague, yet specific, right. And those who constructed the law weren’t those who were disabled individuals. And so, what these terms like undue burden, reasonable accommodation, well, reasonable to whom? And so we have kind of this conflict that goes on, and how does that get resolved? Oftentimes it doesn’t, and that’s why things get pushed to the lawsuit level, but also that hinders really the perception in the community, because people don’t like lawsuits.
Lizzie O’Leary: When we think about businesses and employment and, you know, this 30-year time period, has the ADA changed any of the hiring discrimination that a lot of people with disabilities have faced and do face?
Luticha Andre D: I think there is some data to show that there has been some sort of uptick in employment for disabled individuals, but it’s not really that much. And I don’t know if it’s a causal relationship with the ADA. It might be more access to education. But hiring discrimination happens anyway, and you see that a lot in the language of jobs, in and of itself. Like a job advertisement, people don’t really think about is that job advertisement have discriminatory language within that. That seems to be a new frontier, too.
Katie Savin: It’s interesting to hear you say that, because that really dovetails with the vagueness of reasonable to whom, with regarding accommodations.
Luticha Andre D: And if you don’t know about disabled individuals, and you don’t know that sometimes it’s as simple as, you know, buying a different type of desk, or what is the actual cost of putting in a ramp to your business. People tend to think that it’s a lot more expensive than it really is. And sometimes it is really expensive. If you’re a city like ourselves in Rochester, New York, our building stock is very old. All of this is kind of, you know, in 1492 Columbus sailed… you know. So if you’ve got that type of building, rehabbing that into a modern context is going to be extremely expensive.
Lizzie O’Leary: You mentioned lawsuits, and the issue of lawsuits has come up a lot. There was a bill in the House, the ADA Education and Reform Act. It makes it harder to sue businesses under the ADA. When we talk about this tension, particularly around small businesses, do they consider the ADA not to be business-friendly? And is there a way to have these better connections between communities and businesses in conversations around disability and around access?
Luticha Andre D: I think there really is this belief that the ADA is not for a business, and that it’s something that is just another hurdle and another barrier to doing what they have to do. And a lot of that ends up – one, that’s an ableism thing, because people with disabilities are often referred to as, like, special needs and that this is something extra. Not, no, these are the things that I have a civil right and a constitutional right to access my community, and that this is a community and the human thing to do. Therefore, the barrier ends up becoming the perception. And the lack of support from municipalities, by extension the federal government, ends up harming both businesses and the disabled community.
Lizzie O’Leary: How should we think about the future and making both the legal aspects of the ADA sort of more accessible to other people, but then … I don’t know … adding on to that? Changing it? Where do you see the path to go from here?
Luticha Andre D: Well, I’m big on process improvement for governments. I think that’s something that we should be doing, and looking at ourselves critically and how we structure what it is that we do. And particularly with this law, there are some great opportunities for change. I don’t want this to mean like I’m bashing the ADA all the time. I think it provides a great skeleton, but it needs to grow just like the disability rights community has grown, right, and how our society has changed.
Lizzie O’Leary: Luticha Andre Doucette is an innovation researcher for the city of Rochester. Thank you so much.
Luticha Andre D: Thank you so much for having me. This was pretty awesome, actually.
Katie Savin: Luticha mentioned a term, ableism, during our interview. Find out more about what it means on our website, marketplace.org. Search for Economics of Disability.
Lizzie O’Leary: You’re listening to a Marketplace special on the Economics of Disability.
Katie Savin: We’ve been talking about disability as it relates to employment-
Lizzie O’Leary: And how it relates to accommodations at work-
Katie Savin: And the ADA.
Lizzie O’Leary: Something else that affects employment for everyone is the job market. We’ve spoken recently on the show about how the tight labor market opens things up for groups that frequently have higher rates of unemployment, like disabled people, whose unemployment rate was 9.2% in 2017, compared to 4.2% for people without a disability, according to the Labor Department.
Katie Savin: This was consistent no matter how much education disabled people had, and unemployment rates were even higher for women and people of color with disabilities.
Lizzie O’Leary: 29.3% of people with a disability between the ages of 16 and 64 were employed in 2017, compared with 73.5% of people without disabilities. Again, those numbers are from the Labor Department.
Katie Savin: When we are employed, we are likely to earn less per hour, and yet disabled people have extra costs, like health care, and often need to earn more than non-disabled people to achieve the same standard of living.
Lizzie O’Leary: We wanted to hear about the experience of job hunting first-hand from a recent UC Berkeley grad. Tyson Pope got his B.A. in History in 2017.
Tyson Pope: I’m dyslexic, dysgraphic, and have attention deficit disorder. K through 12, I was put in special day classes. Those classes were like five to ten students, and students from all spectrum of developmental disabilities. I was put in those classes throughout middle school and then throughout high school. And I was never really prepared for community college or anything like that. I didn’t apply to any universities when I graduated high school. I was just happy to graduate. I started working at Walgreen’s, and I enrolled in Riverside Community College in southern California. And I started just taking one class at a time, because I wasn’t too sure if college was even for me. I learned how to learn with my disability. I graduated with my Associate’s degree in 2008 with distinction, but I found out that I couldn’t really get a job with an Associate’s degree. I applied to the UC system, and I got in. It was a little bit challenging at first getting my accommodations. I graduated with honors from Berkeley, so that brings me to now.
Tyson Pope: I’m currently looking for a job, and it’s very hard. It’s not very easy for people with disabilities like me to navigate the system. There’s no one you can talk to. That’s where I’m like running into, like, roadblocks and frustration with the job search. You think when you graduate a school like Berkeley, fill out applications, submit your resume, kind of, a job would get handled. Right now I’m a substitute teacher for Prince William County School District. Right now it’s summer school, so there’s no opportunities for me to pick up assignments. I’m currently unemployed. I’m just like waiting. It does ask you, are you an American with a disability. I do check, yes, but it doesn’t give me an option to explain it, like what kind of disability I have.
Tyson Pope: It’s frustrating, too, because we hear like this current administration, you know, say that the unemployment for African-Americans is at a record low. But, you know, it’s – I don’t know what kind of jobs they’re looking at, because I’m unemployed, or underemployed, and I’m African-American male. And that statement isn’t really true for me. I know that I’m fortunate enough to have a family that supports me. Both my siblings are attorneys, so I’m financially being supported by them. But, you know, I’m 35 years old, and it’s embarrassing. I’m getting embarrassed, you know, for myself because I’m not employed. But I’m going to keep on fighting. I know it’s, like, the story of my life. Things take a little bit longer for me. And this is just another situation where it’s just going to take a little bit longer, but I know eventually someone will come across my resume, and they’ll believe in me as much as I believe in myself.
Lizzie O’Leary: My thanks to Katie Savin for joining me to talk about disability and employment. Still to come on this Marketplace special, the power of rehabilitation and rowing.
Speaker 9: Okay, we’re going to do five and glide by twos. Ready, row.
Lizzie O’Leary: Stay with us.
Lizzie O’Leary: You’re listening to a Marketplace special on the economics of disability. I’m Lizzie O’Leary. So far on this show, we’ve talked about education and employment. We wanna move now to healthcare, and we’ve got another cohost for this section.
John Margetis: Hi, I’m John Margetis. I’m an assistant professor of Clinical Occupational Therapy at Keck Medical Center of USC. And I was born with congenital amputations of both hands and both feet. One of the big issues in healthcare and disability is the transition from pediatric care into adult medicine.
Lizzie O’Leary: For a lot of people with developmental disabilities, like cerebral palsy or spina bifida, finding care as an adult can be a challenge.
John Margetis: This is in part because these disabilities have been linked to childhood for a long time. But with better medical care, people with these conditions are living longer into adulthood.
Lizzie O’Leary: And, they’re aging out of pediatric care.
John Margetis: That’s where transition medicine comes in.
Lizzie O’Leary: Dr. Dan Linfesty is an internal medicine and pediatric specialist at the Eskenazi Health Center for Youth and Adults with Conditions of Childhood, based in Indiana.
John Margetis: He joined us from his clinic where his team of doctors, nurses and social workers assist patients ages 12 to 26 transition successfully from childhood into adult medicine. We started with a look at some of the challenges patients face as they transition into adult care.
Dr. Linfesty: We see a lot of patients with cerebral palsy and so I think they’re a great example of some of the differences between adult healthcare and pediatric healthcare. So, at our locals children’s hospital, they have a disease specific clinic. So, they have cerebral palsy clinic where the families can come in and all of the medical providers that are involved in the care kind of rotate through the room. So they can see the orthopedic surgeon, or the neurosurgeon, or the neurologist, or have their wheelchair adjusted. So, it’s kind of one-stop, centralized location for them to get all the care they need. So when they transition away from the pediatric hospital, a clinic like that doesn’t exist anymore.
Lizzie O’Leary: You know, a lot of the things that you’re talking about obviously require a lot of money. How much funding is out there to develop this as a specialty, or really build on the kind of resources available to families?
Dr. Linfesty: So, a lot of the work we do is not funded by a traditional healthcare reimbursement scheme. So we spent a lot of time with our patients, maybe 45 minutes to an hour, so, I can bill for that time. But all the time that we spend in chart review, getting their medical history done, or the care coordination afterwards is not funded by traditional health care financing, so. Our clinic is grant supported. The way we get, you know, help families out or the way Medicaid in the state of Indiana helps out, there are what’s called the Medicaid waiver program. And this allows families to get additional funding beyond what Medicaid would traditionally pay for, for health services. So, this might include things like, you know, if they wanna go to a day program, or if they need a home health aide, or if the parents or caregivers need some respite care, Medicaid waiver programs help provide funding for that.
John Margetis: Now, there are some more robust programs out there. CYACC, yours, being one of them.
Dr. Linfesty: Mm-hmm (affirmative).
John Margetis: Do you have any sense of whether this type of transition care is less accessible in rural communities?
Dr. Linfesty: So individual doctors in primary care offices and sub specialists do some of this work on their own without needing our help, but specifically, a clinic like our set-up is, we’re the only one in the state of Indiana.
John Margetis: With the size of Indiana and just the size of the states in the U.S., is there any move for providers like yourself to have a tele-health access?
Dr. Linfesty: Yeah. That’s something that we’ve actually talked about in our clinic because, like you’re saying, we have patients travel from all over the state to see us. So they may travel several hours to get to our appointment. And so we’ve actually had some discussions with some large primary care clinics to see if we could set up a tele-medicine room so that we can have patients come to their site and then we communicate with them that way.
Lizzie O’Leary: How does this work for low income patients or for folks who are aging out of insurance or need to set up special needs trusts? Like sort of, what do you see in your population?
Dr. Linfesty: Income and finances is, you know, is always a challenge in healthcare. So some of the services that we talk to families about being really important sometimes are expensive and they … Honestly, they don’t have money for it. So.
Lizzie O’Leary: Yeah.
Dr. Linfesty: So, for example, one thing we talk about is the need for either supported decision-making or something like guardianship. You know, when patients turn 18, they become their legal decision maker. There’s a fair amount of our patients that that’s not appropriate for them. That they’re not gonna be able to make their own decisions in a safe way, and they need a legal guardian. So to get that appointment costs money and you need a lawyer for that. That’s, that’s a barrier for some families.
Lizzie O’Leary: What do they do if they can’t afford that?
Dr. Linfesty: Locally, we’ve been able to partner with some local law firms to provide some pro bono services to these families. And that’s, that’s all I have.
John Margetis: So, we’ve been talking mostly about people who have ongoing developmental conditions …
Dr. Linfesty: Mm-hmm (affirmative).
John Margetis: And they need treatment throughout adolescence and into adulthood. But what are some of the challenges for someone who is diagnosed or injured during this so-called gap or transition period? What are their options?
Dr. Linfesty: Most commonly, what I would see is a patient maybe with like a traumatic brain injury, that would fall into that category. And, there is a Traumatic Brain Injury Waiver in Indiana that is there to help these individuals get, you know, if they need more intensive rehab or other services. It is an option that we have for them.
Lizzie O’Leary: There are gonna be people listening to this, you know, who are maybe experiencing this in their own life, in their family’s life. What suggestions do you have for families or people who are looking for transition care right now?
Dr. Linfesty: It’s really important that families plan for this transitional period. It may sound like simple steps, but, you know, learning how to make a doctor’s appointment, and learning what your medications are, and learning how to advocate for yourself at a doctor’s appointment, it’s very important. And, that’s what they need to start developing in those, kind of, teenage years so that when they turn 18, that it’s not a, you know, a giant jump from being seen in the pediatric world up into the adult medicine world. And so that they’re prepared for that.
Lizzie O’Leary: Dr. Dan Linfesty is an internal medicine and pediatric specialist at the Eskenazi Health Center for Youth and Adults with Conditions of Childhood in Indiana. Thank you so much for talking with us.
John Margetis: Yeah. Thank you.
Dr. Linfesty: Thank you. It’s been a pleasure.
John Margetis: Dr. Linfesty suggested we check out GotTransition.org for more information. You can find a link to that and all of our economics of disability coverage on our website, Marketplace.org
Lizzie O’Leary: From care that addresses conditions you’re born with, to care for acquired injuries. John, this is your area of expertise. You work in neurocritical care. Describe what that is.
John Margetis: As an occupational therapist, I see patients who’ve just sustained a neurological injury, like a stroke or a spinal cord injury. I see patients in the earliest phases of their recovery and help them get to in-patient rehabilitation. In-patient rehab after an injury like this is incredibly important, because it’s where patients either regain their function, or learn to adapt to and cope with their new abilities, with the goal of returning to their lives and their families.
Lizzie O’Leary: And, we wanted to get a sense of what rehab is like after an injury or a stroke. So we sent producer Eliza Mills to Rancho Los Amigos Rehabilitation Center in Downey, California.
John Margetis: We’ll let her give you an audio tour.
Speaker 5: (People chattering and laughing)
Eliza Mills: Every year about 75,000 people receive care at Rancho Los Amigos. It’s one of the largest rehab centers of its kind in the U.S., and it’s been around for over a century. There are old fashioned mission-style buildings and behind them a huge modern hospital. Patients come here after traumatic injuries or strokes to work with doctors and therapists. There’s a gym with adaptive equipment, bingo nights, exercise classes, and there are support groups. This stroke support group, run through a program called Know Barriers, that’s “know” with a “k” and a “w,” has been meeting every Wednesday for years now. It got so big that they had to start a second one, and attendees like Mark Heffington find it really helpful.
Mark Heffington: People come in here with problems, whether it’s, you know, putting a shirt on or a jacket or a problem with finances or their home. A lot of the people here go home, research and come back with solutions for everybody. It’s very supportive that way and very creative that way.
Eliza Mills: Mark’s a peer mentor for the group. It helps with everything from learning new skills to researching social security disability insurance.
Miguel Portillo: For when you have a stroke, you get like a year of disability through the state.
Eliza Mills: That’s Miguel Portillo.
Miguel Portillo: Mine’s about to run out. I’m gonna have my year in July. So, my finances is gonna be really affected now.
Eliza Mills: Before his stroke, Portillo worked in inventory in a large warehouse operating a forklift, crunching numbers. He says he can’t do his job anymore. That’s something the rest of the group can empathize with. Here’s Darren Brooks, the group’s newest member.
Darren Brooks: It’s very difficult that you go from being just a regular middle-class person to down to a, to a zero. The closeness that the group have helped me tremendously with my stroke, because I start feeling like, why did this happen to me?
Eliza Mills: Another common theme for this group is a desire to work, to participate in the economy. Here’s Margaret Moore.
Margaret Moore: I get social security, ’cause they retired me. And, I don’t wanna stay retired, ’cause I’m too young for that. I live in a nursing home, so I get $35 a month to do everything I need. I’d love to go back to work. I’m not quite sure what I could do, but I’m gonna find something.
Eliza Mills: For some of the group, one of the most meaningful things they have found has been the community here at Rancho. Fred Dupuis is another peer mentor for the group. He found solace here.
Fred Dupuis: I couldn’t even speak because my stroke is on the left side of the brain. I was a small businessman in fire protection, and I lost everything. Because of Know Barriers, I’m a peer mentor now, and it gave me back the will to live.
Eliza Mills: Rehab gave him his voice and his life back. In Downey, California, I’m Eliza Mills for Marketplace.
Lizzie O’Leary: Thanks to Rancho Los Amigos for giving us an inside look at the community there. And, to Mark Heffington, Miguel Portillo, Darren Brooks, Margaret Moore and Fred Dupuis for speaking with us.
Lizzie O’Leary: You’re listening to a Marketplace special on the economics of disability. I’m Lizzie O’Leary with my cohost John Margetis.
John Margetis: It’s not just rehab gyms where people with disabilities can go to work out.
Lizzie O’Leary: Plenty of other gyms are becoming more accessible.
John Margetis: And trainers can learn to adapt a standard exercise and workout routines for people with disabilities.
Lizzie O’Leary: This next story comes to us from Seattle, Washington, where a group called Seize the Oar created an adaptive rowing team.
John Margetis: Rowing can be great exercise for wheelchair users, because the rotation of their arms when they row is in the opposite direction of what they do when they propel themselves in their chairs. It helps balance things out.
Lizzie O’Leary: And, for these Seattle women, rowing isn’t just great exercise. It’s also a total blast.
Teal Sherer: My name is Teal Sherer, and I’m an actor and writer and I recently started adaptive rowing, and I am on the team Seize the Oar. I am at Renton Rowing Center, and we’re about to start practice! I was injured when I was 14 years old. I was in a car accident and had a spinal cord injury, and so I’m basically paralyzed from the hips down. It takes a while to kind of get comfortable in your own skin again, and your body works differently. And I went through a period of time where I felt ashamed of my disability, and I felt embarrassed. I think when you start getting active again, and also being just in the disability community, it really made me feel strong again and confident. And I began to love my body, and how it moved, and yeah, it worked a little differently for me, but that was okay!
Teal Sherer: [sound of birds and fidgeting] That’s good.
Speaker 14: The seat doesn’t need to move up or back?
Teal Sherer: No. The seat’s good. I had an extra strap I used last time. Oh, perfect.
Speaker 14: … right behind you.
Teal Sherer: Oh, great.
Speaker 14: Yep.
Teal Sherer: I added this strap last time for my legs, which helps stabilize me in the seat, which was, which was good, made a big difference. Now, let me put on the straps. [patting sounds] I started with Seize the Oar last winter, and we started with indoor training, which is where we work out in a cross-fit gym on rower machines and we do different circuit training with weights and medicine balls and whatnot. And we just recently got on the water. It’s pretty amazing. I mean it’s, you can’t see it, but it’s absolutely gorgeous here. I mean, just the water and the scenery and we’re right next to the Boeing plant, so it’s kind of interesting, ’cause you see all these planes being built like right next door. I mean, it’s just magical. When you’re out there on your boat, you don’t have your cell phone and you’re, you know, you’re off the mainland and it’s just you and your partner … We row in a two seater, so it’s me and another girl and it’s just the two of us. [sound of water lapping the side of the boat, and birds.] It’s pretty special.
Speaker 13: Not bad water today.
Speaker 13: Okay. We’re gonna do five and glide by two’s. Ready, row! [sound of paddles]
Teal Sherer: One of the hard things about having a disability sometimes is the health and fitness and the sports world isn’t accessible to you. Like, I want to stay healthy and workout, but I go to a gym and most of the equipment there isn’t accessible to me, and it can be a little overwhelming. I have worked out in gyms before that are specifically for people with disabilities and those are of course great, because all of the equipment is specifically designed for people with disabilities, and you feel comfortable because everybody there usually understands disability, and gets it. But those gyms, of course, don’t exist everywhere. Like there are not many of them, and so it’s great to have the flexibility to just go anywhere. It’s great not to be segregated. Like, it’s nice for all of us to exist together, you know?
Teal Sherer: We have the … It’s called the Northwest Regionals coming up in Vancouver, Washington and that will be my first race. So, I’m pretty nervous about it. But, yeah. We’ve just been trying to get out on the water more, and like last time, we were out on the water our coach Tara was … we were practicing, like, what the start of the race is like and what to expect and just even how, like, once the race starts, like what our first movements in the boat, ’cause we’re supposed to do like five really quick strokes just to get us out of the start line. And so there’s a whole, there’s a whole technique. It’s a whole other world, the world of rowing, and it’s been really fun to like learn about it and be in the community.
Lizzie O’Leary: That was Teal Sherer, an actor and producer who rows with Seize the Oar.
Lizzie O’Leary: There’s a lot to talk about when it comes to disability and this show just scratches the surface. We have more resources available online, a glossary of terms and language used in this show, and some suggested reading materials. And past stories on social security disability insurance. You can read those and join in the conversation all at marketplace.org. And, next week is our last Marketplace Weekend. We’ll talk about the business of weather. Ask a Manager’s Alison Green answers your questions about vacation. Plus, a very special Marketplace quiz.
And, that’s our Marketplace special on the economics of disability. This show was conceived and produced by Eliza Mills and Daniel Ramirez, with additional production from Peter Balonon-Rosen and Paulina Velasco. Joanne Griffith is our executive producer. My cohosts for the hour were Maria Town, Katie Savin, and John Margetis. Daniel Ramirez and Ben Tolliday produced original scoring for this special. They also engineered the show, with help from Sarah Bruguiere. Evelyn Larrubia is Marketplace’s executive editor. Deborah Clark is our senior vice president and general manager. I’m Lizzie O’Leary. Thanks so much for listening.
This is A-P-M.
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