Shirley Ryan AbilityLab: Lisa Rosen and Jamee Heelan

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Lisa Rosen, MS, has 30 years of experience in physical rehabilitation with expertise in education, training, and program development. Most recent professional experience as Manager of the Shirley Ryan AbilityLab’s LIFE Center (formerly known as the Rehabilitation Institute of Chicago), a multimedia education center and web portal for people with physical disabilities, their families, health professionals, and the community. Responsible for supervising Education Program Managers who provide education programs, classes, support groups and special events. Direct content management for globally accessed education and training materials. Led and designed a variety of innovative disability awareness programs for patient, staff and medical education, research, customer service and knowledge management. In addition, co-founded the Rehabilitation Institute of Chicago/Shirley Ryan AbilityLab peer mentor program to enhance education and the patient experience, which integrates former patients into clinical teaching across all conditions.

Jamee Heelan, OTR/L, brings 35 years of experience with specialty and focus in providing family-centered education for pediatric and adult populations, family, and staff for all levels of care. Conditions include amputee, brain injury, stroke, and spinal cord injury. Jamee’s expertise covers specialty education groups for persons with aphasia and teaching children about a sibling, parent or relatives’ disability. She uses talking notes and customizes educational materials to use an interactive approach that supports all learning preferences. Her approach strengthens the Center’s outreach and impact on community re-integration. Jamee has authored three children’s books and developed brain illustrations for patient and family education in four languages.

 

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Shirley Ryan AbilityLab: Lisa Rosen and Jamee Heelan.m4a - powered by Happy Scribe

Hi everybody, it's Gustavo, the host of the Enabled Disabled podcast. I am a middle aged Latin American male with dark brown hair combed parted in the middle. I am in my living room right now with navy blue polo shirt on and I am just thrilled to introduce Lisa Rosen and Jamie Healing from the Shirley Ryan Ability Lab to the show. We are going to have a fantastic conversation. This is a one of a kind rehab centre in the world. Probably one of the few hospitals that is empowering the community and people with disabilities unlike any other. Lisa and Jamie, I'm so excited and honoured to have you both here. Can you please introduce yourselves and tell us a little bit about what you look like and where you are? Sure.

I'm super excited to be here too. My name is Lisa Rosen and I am Caucasian, white female, mid 50s, brown hair and glasses.

Jamie.

Okay? My name is Jamee. I have to say my middle name. Jamie Reggio Heelan in honour of my father. I am in my mid 50s. Also I am dark complexity a lot because of my Italian descent. I have short spiky hair and I'm wearing a bright orange shirt right now.

Fantastic. Well then I would like to start by talking a little bit about you've both been doing this for quite some time and I'm curious to know Lisa, what got you started in this profession? What drew you to it and how did you get interested in this area?

Well, I was interested in just other individuals and helping people and I guess healthcare at a young age. And I began volunteering at Ric because I heard about it, it's been around since the began volunteering in 1990 and I wasn't sure what I wanted to do as a career, but I just knew it was an outstanding place and I thought maybe volunteering, I'd get some ideas and really fell in love with rehabilitation. I couldn't believe that the patient was surrounded by this entire holistic team of professionals and surrounding them through their entire healthcare journey. Because when you have a disability, it doesn't really go away, it's with you for the rest of your life. So you get to know these patients and their families over time. And I thought that was really neat. And coming to volunteer each day I'd see such amazing progress with the patients and their families. It was just so incredible. I wanted to be a part of that. So it inspired me to get my master's in therapeutic recreation administration and then I had an internship at the rehabilitation institute in the once the internship completed, there wasn't an opportunity in the therapeutic recreation department.

So I ended up working at another hospital with the spinal cord injury population. That gave me great experience for eleven years. And then I kept in touch with everybody at Ric and they reached out to me eleven years later and said hey. We're opening up this information and resource centre. The brainchild of Dr Henry Betts and Laura Fario and Dr Ross. And there's this woman. Chris Shakowski. Who is the founding director of this life centre and she's going to hire some people and you're going to build this centre. And so I interviewed for the position and we officially opened in 2003 and it's been my life ever since then.

That's amazing. What about you, Jamie?

I got interested in healthcare fields early on. My mom was a nurse and growing up, one of nine kids. When we went to school, we were surrounded around a lot of children that had differences. And so from growing up, I can recall having a friend that was blind, one who is deaf. Probably one of the ones that impacted me the most was a boy that ended up having a traumatic injury and he lost both of his upper limbs from climbing up a pole. And he was the one that I was intrigued with, always wanting to know why these people were different and why were they different? And. You know. When you grew up in the you kind of were shunned. Don't ask questions. But I always had those questions and it wasn't until I got into high school that actually it was my boyfriend at the time introduced me to this incredible career called occupational therapy. And I got the opportunity to follow this lady around one time and realise that this is it. This is the career I never knew existed. I kind of thought I was going to go down a nursing path and occupational therapy was it, and I literally was on my way, got my bachelor's degree in occupational therapy and it has been probably the most rewarding career I have ever had.

And when you go to school as an OT, the very first thing you hear about was this place called the Rehabilitation Institute in Chicago, and that's what Shirley Rhinobility Lab was formally called was the Ric. And I knew from that moment that I entered OT school that that's where I was going to work. And it's now 35 years later and I'm still working here, so, yeah, it's probably the most rewarding. I wake up every morning excited to go to work and I think probably it's rare to be able to have that opportunity.

Just in case somebody doesn't know. The Rehab Institute of Chicago was the gold standard for Rehabilitation Institute for a long time and Shirley Ryan has definitely amplified that even further. But you said something interesting, Jamie, that you knew people growing up and were friends with people who had a disability. Lisa, were you exposed to friends or family or anybody with the disability before volunteering at Ric?

Yes, I did have family with a disability, neighbours with disabilities, and I was always intrigued by it as well.

Interesting. Do you think when there are people who I'm sure you've both encountered people volunteering or working for Ric who have not been exposed to people with a disability, what is their typical reaction when they're first presented in this environment with all this exposure? What's the typical reaction that you see from people?

I think the people that I see that come here have heard from someone else that this is the place to come to volunteer. They know coming in that they're going to be dealing with people who either were born with physical differences or the majority that you see here in our hospital are those that have had traumatic injuries. So I don't think anyone ever gets totally blinded by coming here. They hear that this is the place to come volunteer. And many people who are coming to volunteer have an interest, like I had as a young kid, an interest in the healthcare field and making a difference in people's lives. And so I think it's really rare that you get someone that comes in here that isn't expecting something. And when they do walk in here, it's pretty magical because of the positivity you feel when you walk into this building. We have the name Shirley Rhin. Ability Lab. The focus is on abilities, it's on a person's positive movement going forward. And so my exposure of working with the volunteers is I think they're sometimes a little shell shocked at just how incredible this place is, but they keep coming back.

And can you tell us a little bit, lisa or Jamie? Either one. But what happened? What was the transition process and the purpose behind going from the Rehab Institute of Chicago to the Shirley Ryan Ability Lab?

Well.

I think it's pretty bold and I'm really so proud to work for an organisation that is so established as Rehabilitation Institute of Chicago. And like you said. Since 1954. And known throughout the globe as the number one physical medicine rehabilitation hospital. And has been since 1991. And then having Doctor Joanne Smith have the vision of it's not good enough. We need to change things because we want better outcomes for our patients. And they wanted to be the global source of science driven breakthroughs in human ability. That's actually the vision. And even though we serve over 500 individuals across the globe every year, they wanted to tweak the entire rehabilitation model and we became the first translational research hospital, changing the field of medicine and scientific breakthroughs, allowing patients to achieve those better outcomes by bringing research much closer to our patients. So in building a brand new building, the design is completely different. We now have 40 principal investigators, about 200 researchers and $150,000,000 in research portfolio.

Wow.

Yeah. We have the first ever biologics lab in a rehabilitation setting. And scientists working here may include stem cell biologist, physiotherapist physiologist. And the lab is filled with fancy machines that they look at tissues magnified a million times and we can actually dissect one cell and exercise that cell and measure its output. I mean, it's just so cool and it's a standard, these are standard tools in biology but unheard of for rehabilitation setting and that's what's so exciting. So in addition, the issues that we were having before because we always have been involved with research, but the researchers were kind of in another part of the hospital and they may have ideas but they're not anywhere near the patient. So that idea might not be appropriate for the patient and they could be working on it for years and by the time it gets to the patient it might be outdated or not appropriate. But now that we own the building and we employ all these scientists and the scientists are surrounding the patient in the same area so they can respond in real time. And so I wanted to give you an example of what that might look like.

Sure. So for instance, we have this is an example of a physical therapist. She's studying balance in persons with stroke. Okay? And so this physical therapist wanted to make something to have people walk in a controlled fashion so they could practise slipping. One thing that we've learned, and physicians have known this forever, is that when you're trying to rehabilitate a patient you have to wake up their nervous system. So anything that involves almost falling or slipping is a great way to train that nervous system. So the physical therapist wanted to develop something but she didn't really know what she wanted or how to make a prototype. So she went to the individuals who are in charge of the 3D printer knowing that she was asking them for something that she wasn't quite sure. So they made her a bunch of steps with all these ball bearings and 4 hours later she had this engineered tool that she was able to incorporate into patients therapy the next day. That's just how incredible that we have so many resources and tools that, like we say, can bring it right to the patient side. So it's just incredible to see the transformation and incredible the risk that the leaders took in order to make this happen.

It's a tremendous vision and it sounds like it's a tremendous execution of that vision to be able to I know that some of the language that really was inspiring to me is to see that instead of focusing on rehabbing like something that went wrong, you're shifting the focus to what do you want to be able to do? Right? So we're going to help you, we're going to empower you to accomplish, understand and get through these difficult stages to become the person you want to be, to become more active, more fulfilled, more engaged in the community and society, to work all of these things you're doing. And the holistic element is really fascinating. Which leads me to the life centre because the life centre plays a key role in all of this. You're like the heart of it in many ways. Right, so can you tell us about why the life centre started? And then I want to dig into some of the beautiful things that Jamie does with the doctors and the patients as well.

So, Jamie and I have been around for a while and we've noticed a huge change and so did the leaders in the organisation. And like I mentioned, I started in the 90s, volunteering, and I remember seeing a patient who had a spinal cord injury and he was an impatient for months and months and months, and I thought, oh, thank goodness that he can get that information, because it's jarring. You go through this life changing event that you're not anticipating, you never think is going to happen, you're not prepared for, and the carpet gets pulled out from underneath you and you're not even sure what questions to ask, what you're supposed to be doing. You've never heard of physical medicine and rehabilitation or occupational therapy. No one ever hears about that. That's all new. And so now you're here at this hospital. And throughout the years, the change has been that we're seeing patients sooner with more complex cases. So because medical technology individuals are getting saved, that maybe we wouldn't have seen saved earlier on. So prior, maybe I would have seen an individual who is missing a leg below the knee, but now we're seeing individuals who are missing all four limbs and even part of their face, and maybe someone has a spinal cord injury and a brain injury and also has diabetes.

There's a lot of multiple conditions and comorbidities, which there's a big need for information and resources, but you think, well, there's more information now than ever, but how do we know what's trusted and where to look for that information? And having a disability is certainly challenging, so we don't want finding that information to be a challenge too. So the idea was to have this one stop shop of information where we can provide that patient education and consumer health information, where people can access it across the globe at any touch point in their life. So, say they have a disability as a teen and they're learning something about their condition. They may have a different need 20 years later when they're looking for a job or going back to school or looking to purchase their first home or whatever it is. So patients and families really need that support to address the range of emotional and interpersonal and physical and financial requirements for living with a disability. And there's not many places out there that have occupational therapists and nurse and someone who's coordinating a peer programme and a medical librarian and a place that offers individual that support, whether or not you're a patient at the Shirley Vying Ability Lab.

And I feel so honoured that our hospital provides something like that at no cost. It's completely supported by donations.

Yeah. And I think the important thing to know when they decided to build this life centre was because, as Lisa said, in the 90s, we were actually having patients at the acute care setting before they came to us, understanding their condition. And then as you got to the later 90s, early 2000s, we were starting to realise that we were getting them really fast and they really did not have any understanding of what is a spinal cord injury, what is a brain injury. And then when they came to us, unfortunately, healthcare insurance wasn't allowing us to keep them long enough and so we were rushing them out of our hospital sooner than we wished. And so by building this life centre, it really gave that extra ability for educators like myself to go in and work with these patients and work with their family members from that moment of being kind of struck in shock, still in that shock moment, and being able to carry them on. So really, this life centre is probably, like you say, it's a hidden gem that is in our hospital. It should be in every hospital, but again, it gives us that opportunity to assist them now, to never lose touch with them.

They can come back as often as they want and they do. They come back after they realise what value we have as educators. They keep coming back.

So, Jamie, can you talk us through? Because at the life centre. Your team really does go above and beyond to write like you're there sitting with the patient and the doctor taking notes. Being almost like a patient advocate for them. In a way. Because. Like you said. Doctors have the tendency to because they're dealing with these things every day. They assume a bunch of knowledge and speak in a way where it oftentimes can go over the patient's head. Right. Because there's so much emotion there and so much to take in all at once. So can you talk us through what you do in that room and how you help?

Yeah, absolutely. We hold a lot of roles as educators. Our first initial role is to get face to face with the patients and the families within the first five days of their arrival, just gently introduce ourselves. We provide them with a small packet of information encouraging them to connect to us as often as they need to, that we are an educator. We are there to be a liaison to the medical team that they're working with on a daily basis. Yes, you are correct when you said, Gustavo, that sometimes you come across one of the health care professionals that might talk a little bit higher. But we are doing our best as educators within our building to work with our professionals in our building and to get them to slow it down a little bit, to get them to realise these are human beings that we are working with, that are under a lot of stress when people are under a lot of stress, health literacy just bottoms out. And at one time, I used to think health literacy was your ability to pick up information, read it. Well, it's really not that it's being able to pick up the information, read it, process, it being able to understand what to do with that information.

So you were given an example that I shared with you when we spoke last about sometimes the doctors will actually pull the educators in with them during family meetings. And as the doctors have incredible knowledge, they start to talk a lot. And what I do as an educator is I will start to write down points of what they're trying to get across to the patient. And I draw simple little pictures. And those pictures and those words at the very end of the family meeting, then get reviewed by the doctor, and they will be then given to the patient so that the patient then can take what they just heard. Remember, when we as healthcare providers teach, sometimes we will only take away 1015, maybe 20% of what was just delivered. And then there's a stopping point where our brain doesn't allow us to take in any more information, and it's because of that stress and then our health literacy. So those talking notes, I call them talking notes. Talking notes is what I use, and I try to teach. The medical professionals here that work underneath our roof use talking notes as a method of delivering education.

Write down simple words. Whether you're writing down your name, I'm Dr. Smith, and, oh, by the way, I am your rehab physiatrist. And if you ever needed to reach me, this is how you need to reach me. Those little talking notes you pass on to that patient, when you're done, you walk away. And then when that person takes a deep breath, they look down and what's in front of them, it's the talking notes. So, again, we have a lot of different ways that we teach, and we teach our medical professionals on how to be better listeners. We teach them how to ask a patient first, what type of a learner are you? Are you a visual learner? Are you an auditory learner? Are you a hands on learner? And just by asking sometimes that simple question, it should be able to trigger that healthcare professional on changing up the way they teach at that given moment. And so we are constantly teaching.

How did you both develop this teaching method and this protocol? Is it something that was already kind of there and you systematised it, or is it something that you developed over the years and now you're kind of refining it and going back again?

I actually had a personal everything that I do in my life as an OT is based on a lot of personal experiences. My first son was born with something that is called craniosynastosis. It's where the soft spot in the middle of the head is fused at birth. And so, other than being a really difficult birth, because his head was not shifting, he ended up having to have a surgical procedure to remove five inches of bone out of a five month old baby. And it was at that moment of meeting with a health care professional. An orthopaedic neurosurgeon. Who sat there as I am a medical professional. But a mom. He's telling me what he's going to be doing to my child. But he actually took the paper that my child was laying on. Drew a picture. Just a round picture of the skull. Drew a little zigzag on how he's going to remove it and put a couple other little notes. And then when he was done with his session with me, he tore it off the paper that my son was laying on and handed it to me. And again, you can imagine what's going on in the mom's mind.

My husband, he totally checked out. He heard that and I don't think he heard anything else after that. It was that moment that I realised how valuable those talking notes were because I was in shock, but I could take those talking notes and that's all it was. It was those simple notes. It wasn't something that I learned, but I did learn as a young kid that I'm a visual learner, that I was one that needs to auditory listening to a professor talk. I audio tape classes in college, I rewrote them. I use all the strategies that I learned as a growing adult, as a mom with a child who has a significant craniosynostosis that, holy goodness, I am going to take everything that I just captured in my own life and now put it into my workings as an OT. I'll never forget it. I'll never forget that moment.

I'm curious, this is just a question for Lisa and Jamie. Like, you have both worked together for a really long time. What has kept you both so energised and motivated? And you seem like you have a terrific dynamic between the both of you. How is that developed? And Lisa, as a leader, how do you keep that dynamic so healthy and positive? And you see this always wanting to do better, always wanting to do more, always wanting to have more of an impact.

Jamie and I both the reason why we're working at the Shirley Ryan Ability Lab is because we want to help patients. So it's just always the basis of everything. So I don't really need to that's internal motivation for the both of us constantly and navigating the healthcare system is really important, especially now more than ever. It's just become so complicated and complex and just to make an informed decision and navigate the system and access resources to manage your care is just such a feat. So both of us are very passionate about all those things and I do.

Think, too, you have to have that internal desire to help people out. People wouldn't be here working at Shirley Rhinobility Lab if they didn't have that passion and having those internal gifts. To be able to see someone who's going through a lot but be able to paint a positive picture in the future that they don't know exists yet, they're still in that shock moment. And I think that's what a lot of our clinicians have instilled within them. From the doctors to the nurses to all the therapists, every piece and staff member that works here has the ability to put positivity and looking forward. And that's what I think we can do most for our patients and for the families that are working with them as part of their healing team. We have the ability to empower people.

I can attest to that just from it's been a long time since I've been there. I was there in 19 97, 98, when it was still Ric, getting some adjustments to a prosthesis. And I met you, Jamie, and you encouraged me to become a mentor. And I think it was a different programme than it is now. You've evolved it considerably. But I remember that you encouraged me to go and meet with a group of parents who had a child with a disability. And as a young, I was probably 23. That was the first time that I was actually encouraged to do something in the disability community. And I remember feeling very nervous about it because I had my own insecurities. I was still dealing with we all deal with people, but it was a very, very moving experience and I think it was about six months to a year. I remember just feeling the pressure of thinking I was a role model, but it really wasn't that at all. It was just people wanting to ask the questions. How did you get through school? Like, okay, you're here in graduate school, you're doing okay in Chicago.

Just to ask the basic curious questions and to get an idea that their child can also have that capacity to adapt and to thrive in the world. It was really powerful.

Well, that's awesome. I know I do have a very strong personality, and one thing that I like to do is I can see the gifts and people that the people themselves don't realise they've got. And so when I put someone like you into that situation, I am always there, right behind you, to support you and to know the questions. All of those families had those questions because they had children that were a lot younger, some that they were still holding, that weren't able to sit up. And so putting you as a mentor at that given moment, I know a lot of times people aren't ready. They don't know that they can do it. And I'm glad you didn't turn away and say no at that time, because look where you have gone with your life, it's tremendous.

It was one of the key moments that I look back on, for sure. It would have been nice to have stayed in Chicago for longer, to develop that further, but it was definitely a pivotal moment in my life and one of the big reasons why I started the podcast and want to do so much now. But I would love to know how the Peer Mentorship programme has evolved. I know, Lisa, you're a big part of spearheading that. Can you talk a little bit about what you're doing with that programme now and how it's changed?

So the life centre is all about providing information and that's really exciting, because when you have that information, it feels powerful. You can make those decisions that are right for yourself and your family, but depending on what type of learner you are. I know I would personally want to meet someone who went through something similar. A lot of people maybe never have seen someone who uses a wheelchair or walker, unless it was their grandparents. But if you're a young individual with a brand new spinal cord injury and you're in your 20s, you kind of want to meet someone who's gone through something similar. And so it's just another way to provide information. So we met some wonderful individuals who have gone through the rehabilitation process and we screen them. Just because you have a disability doesn't mean that all individuals would be a good peer mentor. We want someone who has made that transition back to living in the community as independently as they can. Whether they're working or volunteering, it really doesn't matter. But, yes, they still have their disability, they'll always have it, but they're not leading with it. They found their way where they have lots of things in their life.

When you first go through this life changing event, your life is only about that. So to have them have some experience underneath their belts and to be able to share those tips and strategies with our current inpatients is really an awesome gift that we can provide them with. And we do a lot of training with the Peer Mentors to ensure that they're not going to be prescribing anything, because, like Jamie said, we are seeing the individuals much sooner in their rehabilitation stay. They could have just sustained their injury the week prior. So you just can't even believe this is happening to you and you're not sure even what questions to ask. So by connecting with an individual who's gone through something similar, it really is such a wonderful opportunity that you can see how they navigated these different moments in life, or going back to work or school, or even looking at what wheelchair they purchased or how they travel. And then also we include the Peer Mentors so the Peer Mentors can meet with individuals one to one or with their families. We also have the peer mentors. Involved in our education sessions. So we have our physical location of the life centre in the main Shirley Ryan Ability Lab hospital on the sky lobby on the 10th floor.

But we go all the educators, Jamie's constantly up on the units along with all the other educators, bringing the education to them. And so we'll have individual and group education, both virtual and in person, and incorporate one of those peer mentors into the education session. So when we're talking about transportation, they say oh, how am I going to go to a Cubs game? Now we'll have one of the peer mentors and they'll say, oh, it's super easy for me, I can do this and that and the other, and it just opens up a whole new way of thinking. And then their attitude when they're explaining it is just so natural. And you think, wow, how can I get there? It's a process. And also the peer mentors are a great example of how they advocate for themselves. So in the education session, one of the things that one of our peer mentors kind of developed, he talks about his role as the CEO of his own body. So this gentleman actually is an interesting story. He was 16 when he first got injured and it was in the first few seconds of a football game.

He sustained a very high spinal cord injury where he doesn't have the use of anything below his chin. So he uses a mouth stick for everything and he literally is the CEO of his body and he is the CEO of his company. He has his own business as well. So he talks about his body as his business. Like his CEO duties included developing a mission and his mission is blessed to be able. Also, his CEO duties included, he has to be the HR department, where he screens, hires and trains his own caregivers. He also has to be in charge of equipment, ordering supplies, wheelchair, maintenance, repairs, he has to be in charge of food services, making sure he has proper nutrition, and also board involvement, soliciting guidance from the board of directors, which is the physiatrist, nurses and therapists. And what a great example this is showing individuals that even though you may feel like you are unable to do it, you can see individuals who have figured it out and have tips and strategies, so the impossible doesn't seem impossible and provides these individuals with hope, but not false hope. We also utilise these peer mentors to interact with our staff, with the medical students, with Northwestern medical students and physician assistant students, because they are treating these individuals, but they really haven't had the experience, they don't really know much about individuals with disabilities or the long term consequences.

So I include our peer mentors in these lectures. It's super powerful, a powerful thing because these 175 budding physicians, they're so excited and they want to help and it's the contrast from working in this field for all these years, for the last 31 years. I can't tell you how many times I've heard my doctor said this and it was terrible. And they told me this and they won't forget about it for 20 years later. So if we can get them in the beginning, while they're excited and new and everything's fresh, they don't develop those bad habits and they can understand that there are places like the life centre where they too can understand where to find information and resources and share that with their patients.

I think many people on my show, myself included, have too many of those bad example stories, which we won't share. But it's great to see that you're doing that. It has to be a great feeling too, for the doctors and the nurses and the OTS to know, to see people who have made these adaptations and say, like, wow, we made a difference in this person's life. We didn't even expect them to. They're exceeding our expectations, right? Or, you're fulfilling that human potential regardless of what happens to the best of our abilities. And that's a beautiful thing to see. So I have a question for both of you that I think is interesting because there are some differences here, but I want your opinion on them. What do you think the difference is in terms of treatment, in terms of how the rehab centre handles the psychology and the family and friends between somebody who was born with a disability versus someone who acquired a disability later on in life?

That's a good question. So for many years I coordinated the Children's Amputee and Limb Deficiency Programme at the Rehab Institute of Chicago. And I would say that 80% of the kids that we saw in our clinic actually were congenital limb deficiencies. So that means that they were born with this limb difference. We got them early on and so it was that first time of working with the families. Now you're working with the child, but the child is too young to understand anything. So we are moulding the parents early on and thinking back on how an orthopaedic surgeon who is part of our clinic would always say over and over and over again, you'd look at these parents who are just still shocked that their child was born with a limb difference, and he would say, Your child, from this day moving forward, was born this way and feels 100% whole. This child will never truly understand being born with two hands because he's born with one hand. And so knowing that this child completely sees himself as being whole, he'll lead his life with you leading behind and pushing him forward. He will learn about differences just like every other child learns differences.

When they get into kindergarten, they learn that, oh, not everyone has brown eyes, some people have blue eyes, some people have straight hair, and they start to pick up those differences. It's what the parents do at that given moment to teach them how to that's okay. It's okay to have differences because we're all born with differences. So with that early on, the congenital limb differences or the congenital deficiencies that come early on, like cerebral palsy, where many kids are born at birth with cerebral palsy or other deficiencies, it's what we do with the parents. It's truly we're impacting the parents at that given moment. We will impact those kids later. When you are working with someone who has a traumatic injury, those people have already known what the world was like being, let's say, whole. But when they lose something again, it's how we as health care professionals work with that loss. Don't necessarily focus on the loss. Let's focus on what they have, what they have preserved, what research has done to give us the technology that we are fortunate to have, such as these high tech wheelchairs or these high tech prosthetic devices or the use of external devices that people with spinal cord injuries can put on their legs to allow them to stand like they once did.

So it's again, what we as healthcare professionals do and how we deliver the information is probably the most important. Our techniques surely shouldn't change. We are impacting family, but with the trauma, we're impacting the patients. And I think that's the biggest difference early on. It's the families with the congenital and those kids, if we can keep them going throughout their years of growing up and exposing them to the possibilities of what lies within them, then they're just going to flourish. I think about how many people we've impacted. We have so many people, kids that were born with differences, that got exposed to disability sports and have taken it to the level of Paralympics, one gold Medals competing where I don't think they would have been the true athletes if they were not placed in a facility like ours. Being surrounded by positivity.

I think that's so powerful to say. I'm sorry. At least anything that you'd like to add to that?

No, I think Jamie did a great job.

Okay. I think it's so powerful. And again, I want to just emphasise that point that what the doctor said was brilliant and everybody should hear it and we should keep repeating that message again and again and again. Whether you're born with limb deficiency or some congenital condition, you still feel whole as a person. It's the society around us that tells us you're not good enough. There's something wrong with you. You can't do this, you can't do that. And so getting to the parents early is critical. But my follow up question to that is how do you start to work with the kids as they get into their teens, as they start to minimise the impact of what human society has told us for as long as we've been human, that a disability is not a good thing.

Yeah, I think early on we did that. We kept a hold of these kids that had physical differences and we are the leading rehab hospital in the world and in the US. And by keeping the relationship with these kids. Maintaining the relationship with their family and the siblings of these kids. And really continue to keep challenging them during visits. I really think I often said it was awesome to be able to have these relationships with these babies. These families. And getting them to believe in everything that I had to share with them. To be able to tell them. Just because your baby girl is missing her left hand. She's going to get married someday and she is going to have a family someday if she chooses to do so. These children with differences are not going to be staying within your roof. They want to live, they want to fly, and you are going to teach them how to fly, because, again, they feel 100% whole unless we point out their differences. And so we exposed them to camps, we expose them to sports. We didn't say that they had to compete, but we tried to provide support groups and we tried to always maintain a connection.

And what you're doing along that road of being a young child to get into their adolescence is you're building their self esteem. And by building their self esteem, they're going to realise those gifts that we see. And again, some of those kids are going to be like, Yugostav. Or we're going to get them to be peer mentors, even though they may not have seen themselves as peer mentors. You made a difference in so many people's lives at that given moment and you may not even realise how many until you get those thank you notes that come circling back around and then you realise, wow, I can make a difference. We got involved in schools as part of the life centre. Lisa and I were involved in a school outreach programme. It was called disability awareness. We would bring our little show on the road and we would pull in peer mentors with us and we would teach kids through the use of dolls, through the use of equipment, handling a prosthetic device, seeing a real live adult come into their room, either on crutches or in a wheelchair, and allowing these kids to ask them any questions.

And so kind of our goal, my personal goal growing up, is to always take away any mystery away about what a disability is or why someone is different. If we can answer and take away mystery, what you really, truly have done is you have taken away the ability for that child to develop some type of a fear. So mystery instils fear. And if we can take that mystery away, then we can teach that kid or those children in a school setting that the child sitting next to you is no different than you. They just have a difference. So we did that. We reached out to so many schools and every single school we went to, it was just amazing what we were able to do with teaching something that we knew in turn, those kids were going to turn around, go home, and who are they going to teach? They're going to teach their parents, they're going to teach their other siblings that couldn't partake in it. And again, it's just spreading the good news, the good word, so that we can treat people equally.

That's just fantastic. Like you both said, more hospitals need to have a life centre and do this work, because it's just incredibly I mean, the impact that it's making is incredible. A question for both of you with respect to the life centre, what's next? What's on the horizon for what you'd like to keep doing? Would you like to see any programmes grow? Would you like to see any or is it just keep doing you're doing such tremendous work that you just want to continue it. What are the goals for the life centre moving forward?

I mean, disability is a natural part of the human condition which occurs at all ages, genders, races, ethnicities, language and social groups. And having a disability is super challenging and finding that information should not be one of the challenges. And I wish I could tell you something more exciting, but that really is just so incredibly important to find the right information from a trusted source and resources like the life centre help individuals navigate those complexities to ensure that finding information isn't so hard. And then they can have those relationships with their care team so that they can make those informed decisions and navigate the health care system and access the resources to manage their care so that they reduce hospital readmissions and improve quality of life. And I can't think of anything better than that for our individuals to live incredible long and fulfilling lives with wonderful quality.

So for somebody who's out of state, are they able to come to Shirley Ryan and get treatment or make an appointment with a doctor or see a physical therapist? How does that typically work?

Yeah, people can come to us, they come from across the world, I mean, from other countries. If they have a question and they think that our facility is the best facility, then they'll connect. If you're talking about someone who's international, then we have a team, our Global Patient Services team will assess to see whether or not they'll look at records. They don't want someone to come here and give them some false hope that we are something magical. Maybe what they're getting is actually something really good in their country, but we will always do that assessment ahead of time before sending someone here. But the answer is too, again, if you're coming across the United States, making a connection, asking the right questions, having an admission liaison who will be the one to review what it is that they're looking at and be able to identify the physician. And do we have the right clinic, do we have the right equipment? We often will ask the questions of what is it that you're looking for? We don't just send someone here and then evaluate them. We will identify if we have something that we feel they will increase their potential of their living standards.

So people can come here, as inpatient, again, it's the admission liaisons that identify insurance. Is it covered here? We don't want people to have to come here and pay out of pocket if they don't need to. The education, though, is free, so Lisa and I and our team here in the life centre, they can call and get education absolutely free. They don't have to come face to face. They can talk to us on the phone, we can do our assessments on the phone with what is it they're looking for. We can also identify if they're a visual learner, hey, let me send you a webex which is similar to a zoom, and we will send them a link so they visually can see us face to face, because maybe that's how they learn best. They can tap into us as many times as they want and again, at no charge, we're open seven days a week. They can find an interest in a particular educator and then always have that desire to go back to that educator, or they can lean on another one of our coworkers because, again, we all have a different flavour of teaching and I think it's important for people to gather insights from many educators, not just one.

You said, do you have anything to say?

I mean, I feel very fortunate that I work for an organisation that allows us to share this information so widely and freely. Anyone can go on our website and access these curated resources that are best practised and specifically for physical medicine and rehabilitation, or call us and we actually answer the phone. So we're like the umbilical cord to the hospital and available for individuals throughout their lifetime. That's just the biggest thing that I want to impart today, that it doesn't matter where you live, you could live across the other end of the world. We're here for you as a support and you don't have to be a current patient at the Shirley Ryan Ability Lab. We will still share that information with you.

Incredible last question for you both, which I always ask is, what have I missed that you feel is important to talk about? And maybe I didn't miss anything, but if I did, if something comes to mind, it could be maybe Jamie. I don't know if you brought one of your colouring books with you to show us, or is there something else that you have in mind?

Yeah, I think that I do customise books for young kids that come through our hospital. And sometimes I think we learned through covet. Unfortunately, it taught us to be better educators, because when people couldn't come on site, it challenged us to really think outside the box. And we learned this whole role of webex, which is like Zoom, and it forced us to create things that I would normally do with the person sitting next to me. And so, yeah, I have books that I create. And again, this one is I always say that the family is the most important part of the Healing Team, which I truly believe. And when you're talking to young kids, they're part of the family. They're also the ones that aren't here in the hospital. And what I want to empower these kids is they are going to make a difference when that family member, whether it be a grandparent or mom or a dad or a sibling, go home. I need to give them some of the tools that I have. And so I create books. And so this one just says that the family is the most important part of the Healing Team, and it's interactive books.

I teach about spinal cord injury, and I teach about what is a stroke, where is the brain? And I get these kids to get excited about science instead of being afraid of what just happened. And why can my mom not talk? Or why can my mom not get up and run across the soccer field with me? We'll teach them other ways that they can do this. And so the interactive books, again, it's my way of learning that my left brain hears information, but my right brain visually sees it. And so the interactive books get a child to fill in the blanks or to trace things. So this one was, you're going to learn about the brain, what is a traumatic brain injury, what are roads in the brain, and ways to help? And so they're like, literally ways to as I'm getting them to trace over some of my words or to actually fill in a blank of its mom or dad. I'm actually using a technique that I'm empowering and integrating in their own brain. So, again, we'll take any challenges. I think Lisa said the most important thing is you don't have to be a patient at the Shirley Rhinobility Lab to receive the education.

It's free. It's there for you if we don't have the answers. And believe me, there are a lot of times I do not have the answers. But my job is to help find the answers and to take some of that difficulty away for families. So we empower young kids. I taught kids as young as three years of age. The method behind my madness, without really telling my true skills is when I'm teaching those little kids about a disability. What I have actually done is I've actually trained all of the adults that are going to also read those books. So it's really just bringing it down to a really easy level and empowering people. So again, I don't know. I do get so excited about teaching. I have a lot to do. I'm only 35 years into my teaching and I want to empower more health care professionals to take on our skills and our methods and get them to be really solid healthcare professionals because they're going to make a difference in our people's lives.

That's truly, truly remarkable, what you're both doing. I just can't thank you enough for being here, for sharing all of this. I hope I'm looking forward to doing more and to just shouting to the rooftops of the world of how incredible the Shirley Ryan Ability Lab is and the unbelievably important work that you're doing at the Life Centre. How can people reach out and contact you?

I'm so happy you asked that. I've been dying this year, like, waiting. Our website is www.sraalab.org. Lifestyle centre. That's how you get to the Life Centre and you can reach us at 31223 Eight Life, which is 54337 days a week, where someone's there from nine to five. We're there to be supportive for you and we would love to share some information with you. So, please, I'm hoping that this podcast just gets the information out there and then puts individuals in our path that we can work with and connect with.

We look forward to it. Absolutely.

Thank you both so much.

We had fun. Thank you for inviting us on today.

You're very welcome. Thank you. This is a fantastic episode taking here.

You as well.

Thank you. Bye.

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