Transcription:
Unique Partnership Gives Hope, Expands Services to Lakeshore Foundation Campus

Tiffany Kaczorowski (Host): Welcome to Inside Pediatrics, podcast brought to you by Children’s Hospital of Alabama in Birmingham. I’m Tiffany Kaczorowski. And today we’re talking about a unique collaboration between Children’s Hospital of Alabama and the Lakeshore Foundation here in Birmingham. I have with me here today, Rhett Wheeler, who is the Director of Physical and Occupational Therapy Department at Children’s of Alabama and Dr. Drew Davis who is Division Director of Pediatric Rehabilitation Medicine at Children’s and a Professor in the Department of Pediatrics at the University of Alabama at Birmingham or UAB. So, welcome you guys.

So, this is a very unique collaboration between Children’s and the Lakeshore Foundation and just to let everyone out there know, the Lakeshore Foundation is a sports and fitness recreation facility for people who have disabilities and they also are a training facility for the Olympics and Paralympics. They are a world renowned organization right here in Birmingham and now Children’s Hospital of Alabama has partnered with them through our Physical, Occupational Therapy Departments to form this collaboration. So, Dr. Davis, give us an idea of how this collaboration came about.

Drew Davis, M.D. (Guest): We’ve been working together with Lakeshore Foundation for over a decade. I’ve been on faculty here for about 13 years and from the time I started, Lakeshore has always had a strong presence in Birmingham. They have been active not only locally, but nationally and internationally for many, many years. and so, we’ve always attempted to get our patients plugged in with the programs and services that they have at Lakeshore.

As a physician, I understood the benefits of physical activity, the opportunity for new experiences that individuals who have newly acquired physical disabilities or impairments could have at Lakeshore. But there’s really no substitute for someone going and seeing it for themselves. And so, the challenge that we recurrently had over the years was telling people about this great thing, but you got to see it to believe it.

And even though it’s right over the mountain just a few miles as the crow flies from the hospital, we found that well there are certain families that get over there and they dive in and they take full advantage but there are far too many that just never quite make it over there and sometimes it’s because they don’t have the means to get there. Transportation is a barrier. Sometimes it’s just all the competing issues that are going on when you have a new injury or a new diagnosis, multiple doctors appointments, therapy appointments; they just never quite get over there.

Host: Right it’s one more thing added to the list.

Dr. Davis: It’s one more thing on the list when in reality in my mind, it’s like this is the golden opportunity that’s potentially more important than anything else we’re going to do for you. You know you come to the hospital to have your life saved, to be stabilized, to get a treatment plan but once we save your life; living your life again occurs in the community. And Lakeshore Foundation exists in the community.

So, that was sort of the perspective from which I started to think more about how could we expand this collaboration. And about six years ago now, when my son was born, I read the book written by Mike Stevens, the founder of the Lakeshore Foundation about his experience, his life experience that led him to establish the Lakeshore Foundation and it just in my mind, solidified even more the fact that we need to do something differently.

And so when I got back from being at home with a new baby, we started having some more direct conversations with administration at Children’s of Alabama and the Lakeshore Foundation about what are some ideas about ways that we could collaborate more in the future and so, from that, the idea of actually having a facility on the campus of Lakeshore Foundation where kids could get medical rehabilitation services and therapy services was born.

And then there was a number of years that passed for that plan to be implemented. But that’s where we are today.

Host: And so now we do have this bright shiny new facility on the campus of the Lakeshore Foundation and Rhett, what qualifies a patient to be treated at our facility at Lakeshore?

Rhett Wheeler, PT, DPT (Guest): Right, so the kids that we have really targeted initially have been kids that we feel like really needed to have a transition into more of a community-based model for rehabilitation. Kids that we felt like would really benefit from some of the resources that Lakeshore has to offer in terms of facilities and adaptive sporting programs. As Dr. Davis mentioned, years ago we were having issues just being able to get patients over there, having kids who kind of were going through different stages of grief and thing like that, that even after they discharge, if we didn’t get the opportunity to take them to show them those things and they may not have been even interested in seeing those things.

So, we’re getting a lot of kids maybe who have come off the inpatient rehabilitation service who are considering transitional rehab. Kids who we are really just trying to plug in and see these are the opportunities for you, your life is not over. There is so much potential. There’s a lot that you have to offer and a lot that Lakeshore and Children’s has to offer you. So, we’re seeing kids who have sustained traumatic brain injury, a spinal cord injury who have had stroke or maybe they have transverse myelitis, maybe they have chronic conditions like spina bifida or even cerebral palsy. Lakeshore is not limited by diagnosis or age and start kids and babies even in the water before they are walking.

So, we’re trying to just be available to the patients that we feel like would benefit the most out there. So, it’s not a direct referral to Lakeshore as much as it is a referral to our therapy departments for physical therapy, occupational therapy and speech therapy to those services and then making those judgements and it’s obviously helpful when we have kids that are on service and out therapists are already involved in helping make those decisions as to which kids would truly benefit from being at that location.

Host: And they have to be ready for that transition. They may have certain services that they really need to have here at the hospital but then the Lakeshore collaboration and that facility is available when they are ready for that transition. And you guys make that call with them.

Dr. Davis: Right and I would really think of it as part of the continuum of care that we have because as Rhett said, therapy services occur in multiple locations that are affiliated with Children’s of Alabama and some children have very specific needs for very specific things, but just because they have a need here say at the main campus downtown; doesn’t mean that they don’t have a need at Lakeshore also. Some kids in fact, will go back and forth between the two just depending on what the focus and the goals of the therapy are at a given time. But I think all of us have in our minds the goal would eventually be to have everybody have a gateway to pass through, through Lakeshore because we’ve created such a compelling reason for them to be there and such a great collaboration with Lakeshore that who wouldn’t want to do that.

Host: Right and I think when we were at the grand opening of the Lakeshore facility; one of the patients said that she can look out the window from the Children’s facility and see the Lakeshore Foundation and it just brings hope to her. It lets her know all of the possibilities that are out there and let’s not forget, they train the wheelchair basketball team for the Paralympics and there are so many opportunities there. There’s a swimming pool. There’s a gym, a fitness area and anybody can go there.

Dr. Davis: Right, and I think there’s a lot to be said too not only for just – it’s like real estate location, location, location. Being on the campus, creating that proximity helps people get one step closer. When you can hear someone preach the gospel of Lakeshore and what they are all about, not from a 46 year old balding guy, but from someone who has shared your life experience, someone else who is a wheelchair user, someone else who lost the ability to walk when they were a teenager and now, they’re coping with life as a young adult. And they can tell their story to an individual who is having a hard time going through the same thing. There’s really no substitute for that. That’s not something that I can do as a physician.

Rhett: The beauty of Lakeshore is that when you walk on campus, you’re not going to see physical therapists and occupational therapists and speech therapists and kids in therapy. They are actually doing functional, real life activities that are driven by themselves and kind of guided by coaches and recreation specialists and volunteers and they are participating in activities with their peers in similar age and ability type scenarios. And so, we see particularly our location at Lakeshore as being one that is more of an enabling and equipping and empowering location where we are not saying heh, everybody’s got to be in therapy all the time and we’re going to be the ones that make people whole. It’s people taking initiative, taking ownership, setting goals and seeing a vision for themselves and what’s possible and then engaging in that along with people who have walked a similar road before, along side people who are walking in a similar condition at the time and so there’s just a sense of community.

Host: Right. What kind of comments are you hearing patients say once they’ve been to that Lakeshore facility? What are they saying when they come back maybe for an appointment visit here?

Rhett: Yeah, just recently there was an 18-year-old who was speaking to one of our therapists and one of out therapists asked him what is being at Lakeshore mean to him. And what he said was that it means freedom. That I can participate in things and use equipment there that other places may not have, and it gives him an opportunity to try things that he’s not been able to try, that he loves the place and in terms of just the benefits that he felt like he received, he felt like he could compete and win at things. He gets to work out. And he was concerned – he didn’t want to get weak or small. So, again, that’s the piece that we’re really hoping for is that internal motivation, that internal drive when kids see other kids, young adults.

Dr. Davis: Right and I would add to that sort of on the other end of the spectrum; from a young person who is able to articulate what this is meaning in their life. One of the first families that I saw at our Children’s Lakeshore clinic was a family that had just moved to the area from California I believe, had about an 18-month-old diagnosed with cerebral palsy and they were being seen in this clinic as Rhett was saying, they walk through and there’s pictures of kids in wheelchairs and with various types of physical impairments participating in sports and recreation and I spent part of my time welcoming them to our new clinic, telling them kind of what we’re talking about today how this collaboration came about.

And we spent part of that clinic visit me understanding the child’s medical history and saying yes, I agree with the diagnosis and let’s get you plugged in with these services and early intervention and all the things that we typically do. Here’s what we might do with tone management over the years, but most importantly, you’re at the best place in the world you could be for a child with cerebral palsy. I want to show you about all these – show you all these programs that Lakeshore Foundation has that are water-based, land-based. They are going to meet the needs of your child at various stages of their development and so hopefully, more and more children are just growing up with this is just part of their lives. It’s not something special they do. It’s there from the get-go.

It is a special thing, but they realize that they can do the same things that other people or other children can do, their peers can do. They may do it in a different way, but they can do it.

Host: And we talked about this being a unique partnership. In your travels and you present at conferences and other places around the country; how unique is this partnership?

Dr. Davis: I mean I would say it’s very unique. I don’t think that there’s any city that I can think of that has different organizations when you think about the collaboration between Children’s of Alabama; a freestanding children’s hospital, Lakeshore Foundation; a free-standing sports recreation facility that’s internationally recognized, UAB, the academic partnership with Children’s; three entities that are collaborating in such a way that facilitates not only just community-based activities for kids; but outstanding clinical care and outstanding opportunities for research. I think it’s really unique in the world.

Host: And there is some research going on, some collaborative research going on with UAB there, is that correct?

Dr. Davis: Yes. So the UAB Lakeshore Research collaborative was established when Dr. Jim Rimmer was recruited down a number of years ago to UAB and so his whole focus is understanding what it is about Lakeshore Foundation that improves people’s lives because you can’t really do a randomized controlled study of go to a community-based recreation center and see how your life gets better. So, we have to have researchers that are highly trained to understand what element of this and what element of that is the thing that really is making a difference in empowering someone. It’s just like any research in the world of rehabilitation. It’s complex. The answers are not always exactly clear. And it’s not usually one thing that’s making the difference. But there’s a huge effort to try to understand that so that the programs and services that they have are as evidence-based as they can be.

Host: When you receive a referral Dr. Davis, what’s going through your mind and then Rhett, we’ll get your thoughts after that. Where does Lakeshore fit into the mix?

Dr. Davis: We see patients from a few months of age up until early adulthood and we see patients that have chronic conditions that they have been living with for years, sometimes a child with a new diagnosis that they were born with and we see children that until two weeks ago they were fully functioning and now they can’t walk. And so, Children’s at Lakeshore will fit in at different places for different children. And maybe at different ages. So, I’m looking at not only what do they need from a therapy perspective and then ultimately what do I see is an ideal sort of community-based physical, or fitness or recreation program for them. But what are their total needs.

So, if a child is still in the acute throes of recovery from illness and they have a tracheostomy tube and they are still requiring frequent suctioning of that tracheostomy tube and they are having occasional seizures and other things that would benefit from being closer to the hospital; then that’s a reason that I would say we may not send them out to Children’s at Lakeshore yet or if there’s a specific piece of equipment that I know that we have at one location but not at another; then I may say I think they should go here. But if it’s a child that I think is an ideal candidate for wheelchair basketball and they’re interested in sports; I’m going to say look I want you to go to PT at Children’s at Lakeshore and while you’re over there, I want you to learn about this whole world of opportunities that you have.

So, it’s again, it’s specific for the child and their needs at the time.

Host: Absolutely and then from your perspective Rhett?

Rhett: We’re looking at kids in terms of what program, sometimes even what therapist and skill sets, what facilities and equipment that are going to most match that patient’s needs and abilities. So, for instance, we have thankfully been able to grow robotics and mobility program here at the hospital in our outpatient setting so frequently we will have kids coming in from the inpatient side prior to making a transition to Lakeshore who may need to utilize some of our more advanced robotic equipment. So, the good thing is, is we do have a lot of flexibility and a lot of things that we can offer to patients and it’s not always one size fits all.

Host: Right. So, Children’s at Lakeshore is really part of the tool kit. It’s part of there’s options. It expands our care that we can provide. So, if anyone wants to learn more about Children’s at Lakeshore, you can go to our website www.childrensal.org/childrens-at-lakeshore. Thanks for joining us today guys.

Dr. Davis: Thank you for having us.

Rhett: Thank you.

Host: Thanks for listening to Inside Pediatrics. More podcasts like this one can be found at www.childrensal.org/insidepediatrics.