Okay. Thank you. Well, welcome, everyone. My name is Kristen Caldera, and welcome to our joint CNS and pediatric community session. I am an adult physiatrist at the University of Wisconsin in Madison, and I'm also the current vice chair of the CNS community, and will be taking over this next year as the chair for the community. I am joined tonight by a dynamic group of pediatric and adult physiatrists, and we're excited to present Dear Physiatrist, Let's Talk About Transitions. This is a part of a group of three CNS community sessions with a theme of caring for people with neurologic injuries during transitions and carry throughout their lifespan, and even through various settings. Just to put a plug in for this Thursday, we're going to have our third session, which is entitled neurorehabilitation journey through different settings. For some housekeeping notes, please keep your microphone muted. Please use the Zoom chat at any time. We really planned this session so that it would be interactive. We had envisioned it as being a roundtable discussion. However, please use the chat session. We're happy to stop between speakers and answer questions or also answer them at the end. Please keep your camera off, and remember to clean your CME. Our objectives today are to identify barriers to the transition of care from pediatric to adult physiatrists for patients with acquired and developmental disabilities, to identify some tools that both pediatric and adult physiatrists can use to improve the experience of transition for the provider care team, as well as for patients and families, and to discuss some unique topics to this population of patients, including sexuality, changing equipment needs as people age and transition out of childhood, as well as guardianship. We have a couple of polling questions. Our idea was really to get an idea of who our audience was and to invite reflection upon your current practice and where you might want it to go. We'll give you about 15 to 20 seconds to answer these, and we'll see what our results are. In the first question, please describe your practice. Peds only, peds and adults, or adults only. Number two, how comfortable do you feel caring for adults with developmental and childhood acquired disabilities? Very comfortable, somewhat comfortable, or uncomfortable? And number three, do you agree adult physiatrists are well-situated to continue care for adults with developmental disabilities and acquired childhood disabilities? True or false? numbers in. You should be able to see those. So we have a really nice representation. A fair amount of adults only but definitely 23% with kids and adults with 23% of pediatric only. Looking at the second polling question, it looks like people are very comfortable and somewhat comfortable, about 50-50. I think nobody's uncomfortable. And in our third question, do you agree that adults are well-situated? 92% answered yes, they're true. So that's really fantastic. So let's get to the tips of the trade. So why is this topic salient to both adult and pediatric physiatrists? Well, let's take a look at the numbers. 20% of spinal cord injuries occur in children and adolescents. The incidence of pediatric spinal cord injury is about two cases per 100,000 children in the U.S. Cerebral palsy being the most common motor disability in childhood has a worldly prevalence ranging from one to nearly four per 1,000 live births. About one in 345 children in the United States have been identified with cerebral palsy. Children zero to four years old have almost twice the rate of TBI compared to the next highest group, which is 15 to 24 years old, which puts them right in the middle of this transition period. 61% of children with moderate to severe traumatic brain injury experience a disability. So why are adult physiatrists who treat patients with CNS injuries particularly well-prepared to treat these patients who are either born with a CNS injury or acquired one as a child? Well, there's many similarities. Neurogenic bowels and bladders, cognitive impairments and speech impairments, swallowing difficulties, spasticity management, oftentimes with chemo denervation or backliff and pumps, and various equipment needs. This is also a different population. They're not all the same, and many may see themselves more as differently abled and may or may not have a before-my-injury story and after-my-injury story. It would be more of, well, I'd like things to be accessible for me just like they are for the general population rather than a before and after. They've also already gone through many transitions. They've been in the medical system for a long time often. They have dealt with insurance. They've dealt with having to gain accessibility within a school and the paperwork that comes with that. They have parents and caregivers and are familiar with hiring and firing. They've also had many past interventions much of the time during their times of growth and are familiar with the medical system. These can be differences from our adults with acquired disabilities. I have a dynamic group of physiatrists here. As I said, we have both pediatric and adult rehab represented. We're going to start off with Dr. Elizabeth Martin, who is a pediatric physiatrist from Vanderbilt University Medical Center. She's going to start with what works well and challenges to transition from a pediatric perspective. She'll be followed by Dr. Margaret Jones, also from Vanderbilt University, who's an adult physiatrist. We'll talk about barriers to transition for adult physiatrists and some possible solutions. We'll then hear from Dr. Jolene Brandenburg from Mayo Clinic of Rochester, a pediatric physiatrist, talking about guardianship, which can be very confusing. Then finally, we'll have Dr. Jill Gettings from Gillette Specialty Healthcare, an adult physiatrist, who will talk about how to start and continue a discussion on relationships, sexuality, and aging. I want to say a special thanks to the CNS community and the leadership for their support in this topic, for which I'm very passionate about, and most especially to my co-presenters. After multiple Zoom meetings through spring and summer, I've already learned much from you. With that, I'd like to welcome Dr. Elizabeth Martin. Thank you very much. So, hi everyone. As Dr. Caldera mentioned, I'm a pediatric physiatrist, so I take care of kids all the way from right after birth, often in the NICU or PICU, up until age 21. For many of these patients, I may be involved in their care right after their initial injury or diagnosis. I get to be with them and their families through a lot of different milestones and see them grow up. And so, when I introduce the topic of transition and they have to talk about the fact that they don't get to see the physicians that they've often grown up with, this can be really anxiety-provoking for them. If I'm able to tell them that they're going to continue to see a physiatrist who does the same things that I do, this can provide a lot of reassurance. And I think it's really important to have a physiatrist who sees adults with CNS disorders involved in the transition process, because as physiatrists, we're really good at taking care of complex patients. We're also really good at working with people with disabilities, which unfortunately is not true across medicine. A lot of times, if a patient who has a diagnosis related to a disability comes in with new symptoms, that can automatically sort of be lumped in with their disability. For example, someone coming in with a diagnosis of cerebral palsy who presents with back pain. And they may not get the same workup that somebody without a disability does. We're also really trained well to think about outcomes. And for those with a childhood-onset disability, this is particularly important, because we want to make sure that they're still functioning to the best of their ability when they're 30 and 40 and 60 and beyond. So I think as physiatrists, we really have the best skillset to make sure that we're optimizing these patients' function and quality of life. And our medical system is really hard. So even as a physician, when I'm trying to navigate it from the patient side, it can be really hard to do simple things like trying to get an appointment or find out the results of your tests. And so thinking about this for those who don't have a lot of knowledge on the background of this, it can be even harder. There's also a lot of different supports that we offer for families on the pediatric side compared to the adult world. We just expect adults to be able to do more, and we give them a lot more responsibility. So as a pediatric physiatrist, I see it as my responsibility to make sure that I'm really preparing my patient and their family for this transition and setting them up for success. My first step is usually finding an adult physiatrist who's appropriate for them to transition to. And this may depend on what their needs are going to be. Some patients may have more focused needs. They may just need injection therapy or orthotics. Some may be much more complex and need someone who's comfortable with doing a more comprehensive assessment at each visit. I also want to make sure that they're finding a primary care provider that they can continue to see after reaching adulthood. And this might be somebody with internal medicine or family medicine or med peds, and that they have a plan for identifying who those additional specialists that they're going to see as an adult is as well. I really want to make sure that we're maximizing the independence of these patients and giving them every opportunity to do as much as they can on their own. And again, with our challenging system, removing any barriers that may prevent them from accessing the medical care that they need. There are definitely a lot of challenges with the transition process. I'd say the primary one is probably the lack of specialists who are familiar with some of these complex pediatric diagnoses. Historically, some of these pediatric diagnoses, patients didn't live to see adulthood. And so with better treatment options now, they are living longer, but that means that many specialists on the adult side are not as familiar. Insurance can be another barrier. A lot of those with diagnoses that are chronic disability may have Medicaid, and that can be a barrier to accessing certain specialties as well as primary care physicians. And some common ones, socioeconomic status and language barriers are truly barriers regardless of whether or not somebody has a disability. It also can be an adjustment again to the different types of supports that you have on the pediatric versus the adult side. It may be hard to navigate coming from comprehensive multidisciplinary clinics in a children's hospital to having more focused exams and visits on the adult side, even if that's more appropriate in your adult care. And again, it can just be hard to navigate our medical system. So I find that starting early really helps in preparing families and making us successful. I'm often starting these discussions with patients when they're 16, if not earlier, because that gives us an opportunity to identify what do we really need to do to make sure that we're giving these patients as much independence in their care as possible. We often start during visits by just engaging the patients more, making sure that they're providing more of the history, identifying what their goals are instead of just their parents' goals. And we can use different tools, like questionnaires, for example, that help us identify what do the patients actually know about their conditions? What do they need to learn to do in order to be more independent? Neuropsychology can also be a really valuable resource with this for determining what patients can understand and manage in terms of more complex decision making. Typically, before I have a patient transition, I want to make sure that they really understand their medical condition, that they can do things like manage their own medications and order their refills, that they can make their own appointments and manage transportation to those appointments, and that they understand what's being explained to them and ask questions of their doctors. This is an example of just one type of questionnaire. This is the one that we commonly use in our clinics called the TRAC. It comes out of Eastern Tennessee. And you can see for these types of questionnaires, it covers what is really relevant to managing your own health care. So, it asks things like, can you fill a prescription? Can you call a doctor's office to make an appointment? And then it helps patients identify that, no, I don't know how to do this. Maybe I want to learn how to do this. Maybe I'm already in the process of learning how to do this, or maybe I'm already doing this. This is an example of another form that comes out of Oregon. And this is actually looking at it from the caregiver perspective. So, this one is directed at the caregiver and, again, asks similar questions in terms of the medical needs that the patient needs to know how to do. But it also helps identify, is this something that they know how to do already? Is this something that they need to learn how to do? Or is this something that really we need to find somebody else is going to be able to help them to do it? So, typically, when I'm transitioning patients, I like to make sure that they are meeting with both their new primary care physician, as well as their new physiatrist, before they turn 21 and before our final visit. I want to make sure that first the meeting happens and then it went well and that they're comfortable with the transition before it actually takes place. I also want to make sure that we start having any insurance discussions before the transition happens. For many kids, they're covered on their parent's plan until they're 26, but then they need to have a plan for what their insurance is going to be after that time. For others, they may have a permanent disability that has qualified them for social security or social security or disability income. And after a couple years of continuous income through that, they may qualify for Medicare coverage. But most importantly, it's important to think about what their needs are going to be in terms of equipment, therapies, or other medical services, and making sure we're trying to find them an insurance that is going to be able to provide those services. For some patients, they're not going to be able to make some of their own decisions and they may need some assistance. And so, it may be important to start looking into guardianship, and Dr. Brandenburg will talk a little bit more about this later on. Before transition, I like to make sure that patients have the equipment that they need, that everything is fitting well, and that there's nothing else that needs to be done before their transition. It's often much easier to get items on the pediatric side before they become an adult. I also want to make sure that I'm really setting expectations for family about what sorts of therapy services they might be receiving as an adult. For many families, they're used to receiving ongoing therapy throughout their childhood. And so, they may have had that through school or through outpatient. And while we're changing this sort of approach on the pediatric side, I want to make sure they're not going to expect that they have to receive this when they're an adult as well. I would like to set them up to finding a home exercise program or finding community activities that are going to help them stay active and stay fit and not have the expectation that they're just going to receive physical therapy every week for the rest of life. It's also really helpful if the physiatrist who's seeing them as an adult is familiar with their diagnosis. It gives the patients a lot more confidence in their care, but it also makes your job a lot easier if it's something that you're comfortable managing. It also can be helpful to start early on the paperwork. So, some of these questions around insurance, legal conversations, guardianship, it can be a lot of paperwork. And there's some items that you can't start until the patient turns 18. But if you give them time to do that, you're more likely to be successful. If you're lucky enough to have social worker case managers helping in your clinic, this can be a huge help. And we really value the help of our social workers because some of the complexities around these applications can be challenging. And some families are just really good at figuring things out on their own, very proactive, and don't need a lot of help. So, this makes our job a lot easier. Often those are families that I'm not as concerned about. I think they're going to do very well because they are so good at finding these resources. So, I have a couple of cases of patients that I've recently worked the transition process with. One is a little more straightforward. The other shows some of the challenges that we've had to work for, just to give you a sense of what we're doing here. So, this first case is a 20-year-old young man. He has a diagnosis of spastic endosonics, diplegic cerebral palsy from a perinatal brain injury. He functions at a GMFCS level 2, so physically he's very high functioning. But he also has very severe dysarthria and a diagnosis of an intellectual disability. Fortunately, his parents began involving him in his own medical care very early. So, he is very good about asking what questions are important to him in his care. And he also was interested in a very specific career path and knew he wanted to go to college. So, he was enrolled in our adaptive college here at Vanderbilt, where they provide them a lot of resources and help them set up with internships so they can work towards the careers that they want. He also has insurance coverage through his parents until 26, and he plans to continue having insurance through the career that he's choosing after that time. His family is very proactive, so they completed all the paperwork that was needed for guardianship around the areas where he's not able to make his own decisions by the time he was 18, so that was already in place. So, we helped with getting him referrals to an adult primary care provider, as well as establishing with an adult PM&R physician to help with his ongoing care. They met with their adult specialist one year prior to his required transition age, so that went well. And he already has a very well-established workout program, so he actually goes to the gym very regularly and works with his own personal trainer, so it's not something where I'm worried about needs for ongoing therapy either. So, this family has done a fantastic job with their setup. I'm very confident he'll continue to be successful, and we're ready for his transition. This next case has been a little bit more challenging. So, this was a young lady, an 18-year-old with a high lumbar myelomeningocele. She also has a VP shunt that has required multiple revisions through the years. She has severe dysarthria, as well as a tremor and impaired fine motor skills, executive dysfunction, and is primarily Spanish-speaking. Her initial care was through our multidisciplinary spina bifida clinic, so she had a lot of supports in place through our various providers, and she actually began working on her transitioning skills very early, three years before transition with her occupational therapist. So, they were working on identifying what things she could do independently, what she needed to work on, particularly around her fine motor skills, and started working on the track questionnaire with her to help her realize this as well. Unfortunately, she's also in DCS custody, and she's had frequent foster home changes, so she doesn't have a lot of supports outside of the medical system. She also has significant insurance and social barriers, as well as her language and communication barriers. We had started the process for adult transition by making sure that we were getting all of her equipment in place, that she was working with therapists in the areas where she could become more independent, and we started those referrals for her adult transition. Her providers also submitted paperwork to DCS to help plan her guardianship and adult needs, and we had a conference call with DCS just one day prior to her 18th birthday to follow up on the plan. At that time, we discovered that DCS had actually not made an arrangement for an adult placement or submitted any of the paperwork that we provided to the courts, and unfortunately, because of the rules, she had to leave her foster placement at that time prior to her 18th birthday, because she would no longer be considered a child. Because of the timing of this, she had to be admitted to the hospital for safety, but because no paperwork was in place, she was now 18 and was able to make her own decisions. So she chose to discharge herself from the hospital and return to her biological family that DCS had originally removed her from, determining they were not able to provide for her medical needs. At that time of discharge, she didn't have any medical supplies where she was going and she stopped showing up to follow up appointments. So all of her providers came together along with her social worker and case manager and identified what we could do to try to provide some supports for the family and education to try to make this more successful. When we reached out to her family, they were very open to engaging with some of these resources. She was very interested in pursuing trade school and her family wanted to help her with that. And they knew that she needed these medical supplies. As we started to provide some of these supports, we saw improved consistency with her attending her follow-up appointments as well as her therapies. And she actually did a fantastic job initiating more questions about her care and showed a lot of pride in her increased independence with the things that she could do herself. We got all of her equipment updated and we got her started back on track for her adult specialty visits. There were some areas where we've identified that she will not be able to be independent because of her fine motor skills and may require some surgical interventions. So we've started that process. And she's done a great job of identifying what goals she wants to work toward. So we still have some ongoing steps to take. We want to make sure that her family continues to have the resources to help her in areas where she can't do things independently. We want to make sure that we're helping her with this ongoing transition from therapies to community activities and using the skills that she's learned at home. And she still needs to meet with those adult providers and establish care with them. But overall, despite all the difficulties we've had to overcome, we're really pleased with her progress and we'll see more to come. So with that, I'm going to turn this over next to Dr. Jones. Hi, everyone, and thank you for coming. So the nice thing about our system is that our transitional crew here is Elizabeth and I, and we both trained in the Seattle area and got some example of kind of how to do transition and have used that moving forward as patients have transitioned from Elizabeth. The other really nice thing is that she sets people up very well, as she just mentioned, and it makes my job a lot easier, but we wanted to share a little bit of our experience here. So please know I'm looking forward to taking over the care of your patient to my pediatric colleagues. I'm very excited about it, actually. We know that our adult model tends to be different and there may be fewer one-stop clinics, but also we hope for fewer need for tests, procedures, overall visits as your patients age. It's helpful when the patient's and family's expectations are explained, and with preparation and intention, it can also be an excellent time. Caregivers and families you've taken care of are very special, and I continue to honor this vulnerable population as they age away from the pediatric hospital. I'm excited to coach your patients through the next stage in their journey, and that's a really fun part of my outpatient clinic. So again, thinking about that change, it can be scary. Even just the footprint of the adult hospital is much different. It's much bigger, or it's just not where people have been. And so some pediatric super clinics are all in one setting, and now we're sending people to even various campuses. That's what we have here in Nashville. But really preparing these patients and families for their new provider or providers helps to understand who these people they're going to. The PM&R department here at Vanderbilt is only about seven or eight years old. So some had never met a physiatrist before, or they have no idea what we are, and so they show up to my clinic and they don't even know what we do, which is the ongoing identity crisis of physiatry. Helping to set that expectation about similarities and differences helps easing the unknown and the nervousness that might come with transitioning to the adult world. But as Kristen has mentioned, and as we've all sort of know, that we know how to manage and coordinate complex care patients better than most adult specialties. So we're kind of that family medicine provider for adults with disabilities, and you can really highlight that in what we do. So, you know, in looking at some of these patients and what's going on, I like to think back or review what's in the chart that we already know that's pertinent to our specialty. And so again, this is hard. If you've had a patient who has seen a pediatric physiatrist and they've had a very thorough review, it makes it easier for you to know, okay, well, what surgeries have they had and what haven't they had? And as I start to plan with those visits, I think about, is there an available adult primary care physician who can care for adults with disabilities? The nice thing in our system is there is a mom of one of my patients who is an internal medicine doctor, and she's found a great interest and passion for taking care of adults with disabilities, and that kind of helps find some of the people that we need to get in for care. Just as Elizabeth mentioned, we're trying to really maximize independence as appropriate for people with intellectual or physical needs, and again, that's gonna be different and state-dependent and person-dependent, and the available resources can just be a great challenge, especially if people haven't thought about things like conservatorship or guardianship. I will say the patient that Elizabeth mentioned is, as you probably guessed, a little bit of a rockstar in terms of what the family has done to really prepare him for moving to the next step. So, and in consideration, as I'm looking forward, not just with review, but also pertinent to our specialties, so what equipment do they have or not have, what orthotics do they have, assistance that's going on, I try to think a little bit about, are some patients gonna need to move to a group home? And I do have a few patients who were living with their parents, but then they kind of wanted to live out of the home, but still needed support, and so they've ended up in a group home situation that's been quite positive. The nice thing here is one of the major grocery stores does hire folks with some aspect of intellectual or physical disability, and that's been a nice program for those to work with. The other thing I'm thinking about, actually, is have their procedures been under sedation, and have they ever had Botox without the sedation, or how does that work for them, or do they need oral sedation? And then figuring out the other surgical history that they may or may not have, and their expectations for that moving forward. The final thing that I really put in my toolkit, or what I wanna think about for these patients, is where do I stand on what medications I might refill? So I'm very comfortable with a lot of the spasticity medicines. I don't know how other adult physiatrists are, but I don't, let's say, prescribe a lot of Artane, but I might be comfortable doing that, but I may not prescribe a lot of seizure medications for the kids that have seizure history, and so figuring out if that's gonna be me or really drawing the line that that should either be a primary care physician or neurology, or who it may be for whatever medication class we're talking about. The challenges that I'd like to outline when I'm really introducing myself in adult physiatry to these patients is varying out even distance to care. We provide for a very large catchment area, perhaps not as much as the Pacific Northwest, but we are touching on five different states for people who may be coming to our clinics, and so transport, it can be a challenge. What was nice during part of the pandemic is that with telemedicine, we were able to reach out to people that were much farther away, the challenge now being that we can't do telemedicine across state lines with our institution, so considering that. Trying to explain to patients and their families some of the considerations for insurance coverage, such as AFOs don't always get covered in the adult setting as much as they did in the pediatric setting. And the other thing that can just be really challenging is finding the right clinic that can take care of these patients. It's a lot of conversation, and I don't know if that's more our area or overall, but I think there it is more of a general issue that it's harder to find therapists with a neurorehab understanding who might be able to take care of someone with intellectual disabilities, and so putting that in for people. And finally, I think the last thing, and I say this a lot in my spinal cord practice, but it's like drinking from a fire hydrant there, so they're coming into the adult world and we're talking about eight different specialties or eight different appointments that they need to get to, and it just can feel like people are like headlighted deer lights and, deer with headlights, sorry, and just get very concerned for what is going on. So I think going slow and steady and just really coaching people through what the next steps might be is really quite helpful for them. I actually asked this of a couple of Paralympians who had never met physiatrists until they were in their 20s or 30s, which is kind of crazy in my head, but these, again, were both people living with paraplegia, and I asked what were things that were never discussed along the way. So for some of these people, they've never met a physiatrist. For those that, various psychosocial issues or intellectual issues going on, they had never talked about an independent living or had that option presented to them, thinking about driving and how that might look or how that evaluation might happen, sex education, which Dr. Gettings is gonna touch on. A lot of women didn't have conversation about menstruation or OBGYN issues, if they might be able to get pregnant or not. I had one patient with CP who was told she would never be able to get pregnant, and so had a prophylactic hysterectomy unnecessarily. You know, and some of these people really wanna figure out where there might be other peer support, either for patients or even family members, because it's a part of the process for them as well. And then not everyone knows how to navigate sort of the accommodation system after school in terms of getting job accommodations or what jobs might be available to them. So the final thing I think too, is just what is normal and what is normal with their disability and kind of tweaking that difference. So again, these are just some of the things that we can think about as physiatrists in part to these folks. I will say what I think works well for patients coming in successfully from the pediatric realm is prompting them the reason for why they're coming to our clinic. It was really nice. I had one guy with spina bifida who finally was like relieved that someone had finally talked to him about getting a wheelchair. He was very tired after walking for a lot of his life. So, you know, that was a very nice setup that that's why he was coming to me. That's what we could talk about that day. I think the one thing that Elizabeth alluded to and I've seen both in the Seattle practice and here is having that overlap between a pediatric provider and the adult provider, whether it's a physiatrist or whether it's back to one of the other pediatric colleagues who's coordinated care, but sort of having a pediatric provider set up for the adult visit and then back to the pediatric provider before total transition has really helped figure out, give the message again and again of what might be going on. I think another very important part of this practice is really communicating clearly for who may be doing what. So saying this is the provider for this X, Y, and Z and lining that up. And I really think written instructions can be helpful in that setting just for the patient and their caregivers as might be necessary. The other thing is if possible setting, you know, if people are more computer savvy, they might be using their epic messaging or some sort of setup like that that they can look back to for where their appointments might be, where their medications might be and really teaching them a little bit about that. In terms of what can work well at the system level, one thing that I think has been helpful in our system is having ongoing conversations with our pediatric colleagues and identifying one, the need for transition and then brainstorming how we might do that. One thing that's come through is just sort of prioritizing who may need Botox or if they might need set up with urology sooner than later. And we've used a lot of the nuances and the help or excuse me, the tools within our electronic medical record to help connect providers and figure out next steps and put things into the right pool and planning forward in that way. So in our system, as I mentioned, we have not had physiatry around very long in comparison to let's say a very well-established internal medicine program. So the other thing that's just a challenge is understanding what may be again, normal or not normal for some of these patients with disabilities. So cerebral palsy has been one of the CP and all of its patients have been a very surprising struggle given how common it is in childhood, but people will not understand it well. So they will think that people are having quote CP flares or just didn't really know how to handle these patients. I think Elizabeth mentioned too, it's like, oh, this is just part of their CP. So they may not get a workup for back pain that they maybe otherwise should, or they may not get a workup for worsening gait because that's how it always was. But if you talk to the family or you talk to the patient themselves, they really are having a big functional change and that's where physiatry really can come in. So that's been, again, just a very surprising struggle. Here's a case of that. And what was interesting about this case is, I'm sorry, I didn't mention there. She's GMFCS of five, metastatic quadriplegic CP with some dystonia. She transitioned to adult care, but, and her mom was a physical therapist herself, but this person just really didn't have a lot in the way of functional setup, conversation setup. So she had never had Botox before. So we talked a little bit about how that might help with the positioning. Part of that was just her mom was trying to do what she could with regard to range of motion and whatnot. But as she started to have more and more physical ailments so she has a bad back, a bad knee, and a bad wrist, we had to think a little bit of how we can help with positioning and how we can help treat her daughter and also help treat her as a caregiver. She didn't have the appropriate tilting space wheelchair. So we worked on that. We worked on the appropriate cushion and put her in with some good therapists and our vendor who's very well experienced with this population. And then I also just identified various orthopedic and plastic surgeons to talk about tendon lengthening as that might've been appropriate for her. At our last visit actually, and this patient has two sisters, but I was just talking with her mom a little bit about what are you gonna do if something happens to you or your family? And she has a lot going on on her plate just because her brother also lives with CP actually. But she was very happy to get that information and at least have that question asked of her so she could start thinking about it for her daughter. An example of what's really worked well for our clinics and the transition is what we've been able to do at the Spina Bifida Clinic. So this was set up before Elizabeth got to Vanderbilt, but most of the Spina Bifida clinics have been followed mostly by surgeons. So the urologist was in charge of this clinic in part with an orthopedic surgeon doing a lot. And the therapists that have been involved have really identified a great interest in transition for many, many years and had been highly involved with the Spina Bifida Association. So they had a very well-established clinic and then they found both Dr. Martin and myself, we started relatively at the same time and really sort of, we started to make strides in transitioning these patients. So we helped with communication and we helped in planning what we would be doing next. So what we did is we all met as a group and discussed some of the barriers and benefits of an effective transition in our system. And we talked a little bit about anecdotes within our clinic to help discuss poor outcomes and why PM&R should be involved. And then we reviewed a potential way to improve overall flow and process through our system and what might work in terms of getting patients into my clinic and with the right insurance or the right requests given insurance, because we do have some limitations in our institution with regard to Medicaid patients, which is a whole other topic. But what we found is that the decision was made to start transitioning Spina Bifida clinics and patients in particular to transition starting around age 17. The peds urologist would reach out to me using the electronic medical record and start the referral for transition to occur. And then we would have them seen in my clinic sometime in the four to six month range or sooner if needed, that would be especially true if there's issues with specificity or bracing or whatnot. Then after that, we would have them follow up with peds after meeting me and then follow up from thereafter with the adult physiatry and other adult practices. Again, this is met with potential for breakdown if someone were to leave the system or if the message wasn't sent or received, if someone's out of town or on leave or something like that. But within all of that, really there's a lot of opportunity for improvement and we're very aware of that. We're still trying to figure out the flow of patients out of pediatric care, figuring out other providers other than just one adult physiatrist, because we should be able to have, what is that version of the adult complex care clinic and how can we impart that for our increasingly complex patients that are still out in the community? I think having some sort of shared drive for resources for pediatric and adult providers would be helpful. Neurorehab therapists or a good orthotist or which surgeon should we send people to? There's some sort of room for collaboration within the neurodevelopmental group as well. If you look at some of the adult or the across setting muscular dystrophy groups, I think that there's just a lot of room for improvement and places to take this and I think it's why it's a national conversation. So with that said, I think we move on to Jolene. Thank you. I think that Jolene is getting set up. I had, thank you for that presentation. I did make a couple of comments that I also use the got transition materials as well, and that it is really helpful when the pediatric physiatrist sets up the kind of sets the table and says, okay, I've done this and now I'm going to pass you on. Congratulations, you graduated. And then we also did have a question or just a comment on, you know, some patients are lost to transition and you know, there are no shows and this is really difficult to deal with in a very busy clinic. One of the thoughts that I had are, you know, sometimes when patients are going from kids and let's say you're giving an auto call that call goes to their parents or to their caregivers. But once they're an adult, where's that call going? Did that get lined up? And we've had some problems with that. I've also had patients that definitely went away from medicine for a while because they wanted a break. And I don't have a solution for that. So there's a lot of, I love the idea of going from kids to adult, back to kids and then continue with adults. It's just a matter of kind of making that fit into your, into your practice. So, so many things to discuss and thank you again for bringing so many of those ideas up. Thank you, Kristen. And thank you, Elizabeth and Martin for setting me up to be able to talk a little bit about some decision making options for our patients and families as our patients are transitioning to adulthood. And I'd just like to say, first of all, that I am not a social worker. I had to rely pretty heavily on the social workers that I work with to help me tweak and get this presentation in some form for everybody. It's a lot about definitions and what things are and how we call things, which I think will help us in having those discussions with our patients and families. And the other piece is remembering to start this discussion pretty early. So trying to start it when our kids are early teens. So with that being said, when we're talking about guardianship, who's doing what, who's making what decisions, I think part of it is being aware of what options are available for those who may not be able to make all their decisions independently and how to sort out if they are able to make those decisions independently. So something like guardianship, conservatorship or supported decision-making, something that's appropriate for your patient or some combination of that. Or are there other options that may be available, particularly around finances, because finances and healthcare tend to be the two areas where folks end up having the most trouble and can be the most vulnerable and get the most harm if they're not set up for success in those areas. And a big thing to talk about is terminology. So I learned recently that in Minnesota and many other states, what we call guardianship basically includes decision-making over everything except for finances. And for finances, that's called a conservatorship. And I think we've had some exposure to that with the things that are going on with Britney Spears too, where she's had both guardianship and conservatorship. But there are some other states where they use the term conservatorship and that is all encompassing for everything. So I think it's important to also be aware of what the terminology is that's used in your state or in your area. So you know you're talking about the same thing when you're talking with the social worker or the county worker or the patient and families. So when we're talking with our families and hopefully teens and starting to plan for that process of transition and who's going to make what decisions, we need a starting point for deciding what decisions do we think that that teen might be able to make or where are they going to need help with that. And I thought this was a really nice sort of quick and dirty tool to give you an idea. I like the green light. They're good at this. Yellow light, they'll probably need some assistance. Red light, they're going to require a lot of assistance. And it covers multiple domains of living. It's just a few questions in each area and gives you a place to start that conversation. It's a fairly easy tool to find online and there are many others that are like this and designed like this. If you simply Google guardianship or alternatives to guardianship with this. I know when we're thinking about decision making, one of the things that can sometimes be helpful is backing up and thinking about what are the things that are required for informed consent. We're always asking families about informed consent or patients about informed consent for procedures. But truly for someone to make informed consent, they really need to know what their choices are, understand the consequences and the risks and benefits of that choice, and then make a choice that a reasonable person would make. Now, it doesn't necessarily have to be the same choice that you or I would make, but it's something that another reasonable person may make. And when I think about that, I think about things like individuals deciding whether or not they're going to wear a helmet while riding a motorcycle. In some states, that choice is left up to the individual or things that are going on right now, such as with the COVID-19 vaccine. So when we're thinking about this and looking at this worksheet, the other thing to think about is, are these things I would reasonably be expecting somebody to do at a high level when they're a young adult? I'd have to say some of the things revolving around finances I might not have been so great at when I was a late teenager, young adult, but have gotten better and more sophisticated about that, I think, as I've gotten older. So also framing this in the setting of the age of your patient when you're going through this, or the family brings something like this to you to ask, how do we move forward or what do you think of these responses? So when we're talking about what are the options available for families who have teens that are transitioning to adulthood and want to be able to help them in an appropriate manner for their decision-making, one of the sort of lowest levels of help that can be provided is something that's not a legal document, but it is a process. So it's called supported decision-making. And it's not something that I had seen formalized or was quite as familiar with, but it can be something if you, again, look it up online, Google supported decision-making, you'll find that there's quite a few organizations such as Center for Independent Living or PACER that have documents that help you work through the process of what supported decision-making looks like, who individuals that may be identified to help the person that's being supported in making those decisions. The important part about it is that the person in the center of all of this doesn't have to follow the guidance provided by the people who are supporting that decision-making, but often if it's set up in a way for that individual to be successful, to work through the pros and cons, it can be a very good relationship and it allows the individual to still retain all of their rights to make decisions. So it's a nice way for somebody perhaps with a mild intellectual disability or someone who's able to make decisions in certain realms to be able to be supported in making those decisions and still have some independence in that decision-making. There's also some other types of assistance with decision-making. An authorized representative is somebody that's often used for the process of going through things like medical assistance or Medicare because that can be quite a complex process. I almost wonder if I would need some of that to get through this because the process is so complex. But it's basically it's a person who's authorized by the individual to help them with making certain decisions on their behalf. It's someone who can sign off on the paperwork for them, someone who can work through matters like claims or appeals on behalf of the person who has the account. And again, can be quite helpful for working through some of the higher complexities of the insurance process for someone who maybe has a little bit of struggle in doing that. But again, doesn't take away the rights of the individual for being able to still make their own healthcare decisions. There's also something called the power of attorney. I would dare say most of us think about power of attorney when we think about things like our own selves being incapacitated and in the hospital and not being able to make decisions and having had somebody designated to be able to make those decisions for us. But there's power of attorneys that can be used for managing property, finances, medical affairs. This is typically a legal process and working through an attorney can be quite helpful in setting the boundaries and the specifics of what that power of attorney is. I can see this being particularly helpful from a medical standpoint. If you have an individual who perhaps has diabetes that's very hard to control and perhaps they tend to not check their blood sugars as much as they should and get hypoglycemic and may need somebody that can make decisions for them on a temporary basis if they're hospitalized due to low blood sugars for a prolonged period of time or somebody who has trouble with seizure control and seizure management and maybe they're hospitalized for a long period of time or someone who has a tendency to get pretty significant illnesses for which they require hospitalization and intubation and would need somebody to help with decision makings while they're in the hospital and making sure that it's someone who A, has the legal authority to do that and B, is someone that the person hopefully knows and trusts to make decisions on their behalf. But this only takes place when the individual is incapacitated. The thing that we tend to talk about the most is guardianship and there are quite a few aspects and layers to what guardianship can look like. First and foremost though it is a legal process. It can take some time to do and petitioners who are working through the process of guardianship must prove why less restrictive options are not sufficient to support the person. So something like why is supported decision making not appropriate for this individual. And families should be prepared to start this before the individual turns 18. There's often for families this sort of gap or this gray area where an individual's turned 18 but yet they don't have guardianship put in place and technically they are able to make their own decisions at that time whether or not it's something they should do. This also does not include financial decision making. So that's a separate process with conservatorship and we'll talk about that in a minute. This usually has yearly required paperwork. So it does require check-ins and does have some oversight to that process too. So when talking about guardianship I think the one that most of us think about the most is the sort of highest level of guardianship which is full guardianship. And in the process of full guardianship the individual basically loses the right to this all seven decision-making powers. All of these decision-making powers go to the legal guardian. So the person who's under guardianship no longer is able to determine where they live, sign contracts for things like apartments, they have somebody else who really is determining if they have appropriate care, clothing, if they're getting access to the things that they need, if they're getting to medical appointments, what medical appointments they should get to, and even accessing the government benefits, things like social security disability falls under that guardian. So truly everything gets wrapped up. Now for many of our families it tends to be that the parents petition for guardianship or a sibling may petition for guardianship. They know the wishes of their sibling or of their child and really do great work respecting those wishes and having them participate in that decision-making process. But once an individual's under guardianship they don't have to do that and sometimes that's where guardianships can really run into struggles. There's also the type of guardianship that's called a time-limited guardianship. So for individuals where they enter into guardianship at a young age, so those that are applying at that time of transition, there's a 72-month limit and that's where guardianship then has to be completely reevaluated. And the reason for that is to see has there been sufficient growth in decision-making capacity in what the individual understands or is able to do to allow them to be able to pull back on some of those guardianship areas. Do they really need somebody who's a guardianship in all seven areas? Can they pull it back all together? Is there some different way to reinstate those decision-making rights or at least some of them? There's also a type of guardianship called power limited and this is kind of self-explanatory in that somebody has guardianship over someone to make decisions in certain areas. Most commonly this is done in areas like health care decision-making where somebody has a guardian for that but has maybe supported decision-making for other areas. They may also then have a conservator to help with them and their finances. It's kind of a nice way to help somebody particularly if they're trying to transition to more independence but are still vulnerable in some areas. We come to conservatorship. This is a legal process. This is the process that revolves around the finances and removes a person's ability to manage money and estates. So the process of doing this goes to whoever is the conservator. In many families it's often the parents who are both the guardians and the conservator. Sometimes it does get broken up between different individuals. The conservator must report the spending and the financial decisions to the court. So the conservator also has to report to somebody else. So there is some oversight in some regards to sort of keep an eye on if the conservator seems like they're making good decisions and managing money appropriately for the individual that they're overseeing and helping with this. When it comes to finances though there are certainly some other options that need to be thought about. Often families have thought about some of these. I know I've had some discussions about these things with families. As the parents are aging, as the children are becoming teens and into adulthood, have you set up a will? And as part of that will often something that comes up is a special needs trust for your child with a disability. This is a way to hold a large amount of money. Say if a parent were to pass away they're part of their estate and their finances would then be put into a trust. Often that's held at a bank and managed by a trustee in which the child or the child's guardian then has to request money out for things that the person needs like housing, an allowance for groceries, paying for college, those sort of things. The nice thing about a special needs trust is that it doesn't affect qualification for the SSI or medical assistant benefits. So it's a way of helping and supporting that individual and giving them the benefit of that without affecting their social security or their medical assistance. There's also something called a representative payee. It's kind of along the same line as an authorized representative for some of the Medicare, Medicaid piece, but it's for social security. So the representative payee can help the individual work through the piece of applying for social security, working through the process of the paperwork, can even be the person who receives and deposits the money and helps keep an eye on the account to help the individual who's receiving these benefits. There's also even a lower level of support would be something simple as a joint bank account. I'm guessing many of us have those with our spouses or perhaps have started something even with our children to start help them with manage money. And the nice piece about the joint bank account is that the individual still has independent access to that, but there's another individual, hopefully a trusted individual, who also has access to that account to see our bills being paid. Is there money in the account? Is it being balanced appropriately to help that other individual with managing money and planning their finances? And lastly, there's something I don't know quite as much about called an ABLE account. And this is another way of saving money in a way that doesn't impact, again, their social security or their medical assistance. And the nice part, I guess, about all of this is that having sort of this awareness that there are these pieces there can help you in directing patients to ask these questions of say their social worker, their county worker, or things like Centers for Independent Living to help them with that discussion of what seems like it would be the best option or maybe where we need to go now. So when it comes to resources, like I said, there are a lot of resources out there on the internet. It's amazing what you can find through Google. In Minnesota, we have a lot of resources that are available through some Minnesota disability networks. One is called Disability Hub Minnesota. And that has some really nice links to information regarding consideration for legal aspects and alternative decision-making contracts like that supported decision-making. It also can direct, it directs you to other websites too to look at for this. The Arc of Minnesota, and there's Arc programs all across the country, but the Arc of Minnesota is what we use because we're in Minnesota. And that has a really nice overview of guardianship and decision-making options that's presented in a pretty succinct and digestible form that can often be helpful for families who are just starting to explore this process, get their feet wet in learning the definitions and what things mean. PACER also has some really nice information on guardianship too. UC Davis, which is a link through one of these websites has some information on supported decision-making, which is something that's really advocated for through disability organizations and ACLU to try and do as much of the supported decision-making process and really try and limit that guardianship to things that folks really do not have the capacity to make decisions on or where they're most vulnerable at. Social Security Benefits and Disability is actually a fairly navigable website. I was surprised by that being a government website, but it did have a nice PDF document that was about 12, 13 pages that talked a bit about social security, what that means to apply for as a child, some of the process of doing that, disabilities that automatically qualify with a little less paperwork than others, the reevaluation process, and then things like Medicaid and that qualification for Medicare for individual and adult has been on the social security for a couple of years. GOT Transition, can't do a transition talk without using the GOT Transition website. And admittedly, I went onto the website, I hit the little magnifying glass to search, entered guardianship, and they had some really nice resources that popped up with regards to that. Again, really focused on emphasizing that seeking the supported decision-making process first and using guardianship as that backup process to really figure out where an individual truly needs somebody to step in and be a guardian and make decisions or a conservator for that financial piece and where they can still have the capacity to make their own decisions perhaps with some supports in place for that. So really nice options for those of you that are trying to have this discussion or perhaps maybe talking to your social workers, but aren't exactly sure if you're speaking the same language, it can be helpful in getting your feet wet and understanding some of this process, but certainly having our colleagues in social work there to help us really goes a long way. And with that, I want to thank you all for your attention and I will transition this off to Jill as soon as I stop sharing. So I just wanted to pause for a second and take a look at our chat box. One of the questions that came up from, oops, there goes my chat box. One of the questions that came up from Dr. Pacheco was, have you seen abuse of guardianship and conservatorship? What is our responsibility as doctors when we encounter this? Dr. Martin was kind enough to answer this and says, for those cases I've been involved in, physicians have to provide a very detailed sworn affidavit. Our courts definitely err on the side of not taking away patient's rights. I've definitely heard horror stories, not of my own patients, but of people having their rights taken away. And she went on to say our Vanderbilt Kennedy Center, which does a lot of legal advocacy and education for those with disabilities, provides a lot of education to the state on optimizing independence for those with disability and resources that may be necessary to do so. And another question that came up was, does the ABLE account affect eligibility for food stamps? Don't know if you know that answer, Dr. Brandenburg. That's a great question. I didn't look that up specifically. I'm not certain if any of the other types of savings accounts would also affect eligibility for food stamps. That would certainly be something to ask a social worker. So I don't know if anybody else who's on has any experience with that and familiarity if that affects food stamps. If so, please chime in. I don't believe that it does. I have other adult patients that have such an account and it is how they are saving money, whether they're saving money to be able to purchase a condo or their own place to live. And I don't believe that it affects food stamps, but it may vary also from state to state. And with that, I welcome Dr. Goettings. Hopefully people can hear me. Can you hear me? I can hear you perfectly. Great, when I moved to share my screen, I lost some of my control. So hello everyone. Thanks for joining us today. I get to follow this great group of presenters who've already discussed a number of important considerations to think about as someone is transitioning from pediatric to adult PM&R care. I am an adult trained physiatrist. I work at Gillette Phelan Adult Clinic in St. Paul, Minnesota. I am here to talk about some pertinent issues or things that come up frequently in my adult practice. And so for a little bit of background on me, I work at Gillette Children's Specialty Healthcare's adult arm. So Gillette is primarily a pediatric organization, but we've seen children or we've seen adults for many years. And the organization decided to consolidate its adult work into one clinic site in the year 2000. And I joined in 2005. Our adult clinic is largely PM&R focused. Patients transition to us in their late teens, early 20s. They must have a child onset neurologic condition to access our services. And that can be anything from child onset traumatic brain injury, spinal cord injury, stroke, polytrauma, to things like cerebral palsy, spina bifida, post polio syndrome, various genetic syndromes such as Rett syndrome. We also have an MDA clinic onsite. So as you might imagine, it's a very heterogeneous group. And we have an embarrassment of riches. We are at Gillette. We do have therapy, TR, psychology and social work onsite as well. Because we've been doing this work for 20 years, we have patients who are middle-aged and older. So when I was preparing this talk or thinking about what items I wanted to discuss, I really wanted to kind of narrow this down to two different topics. And obviously this is going to be a really brief review of each. The first is mobility. And when I speak about mobility, I'm specifically talking about walking. And why am I choosing that topic? Because it's not uncommon when people transition from the pediatric side to the adult side to have them start their first meeting with me by saying, I want to maintain my ability to walk for as long as possible. How can I do that? And we all know, I know I'm speaking to, preaching to the choir, I'm among friends. We know that that walking can be walking in your home, walking as part of an exercise program or being an unrestricted community ambulator. So what does the literature show? When we go to the literature, we know that adults with spina bifida may experience a change in their walking in their fourth decade of life. And for that group, their walking seems to be impacted by their BMI and their neurologic level. This has also been reported in adults with CP. And according to one reference, 52% of adults with CP retrospectively reported a walking decline over the preceding seven year period. And in that group, the change in their walking was associated with bilateral CP, having more pain and having that pain impact their ADLs. So as I meet with patients and I follow them over time, these are some of the contributors to mobility that I think about and I talk to patients about. And I will admit, some of these are interesting to me because I myself am aging. I started this work when I was 30. I'm now in my late forties and I am noticing changes in my own body and increasingly wondering, what is this relationship between aging and then aging with a disability? And remember, I have a heterogeneous group that I'm addressing. So top of the list, not surprisingly, is muscle strength. So muscle strength is an important predictor of functional abilities over time. And we are all at risk, or we all will develop sarcopenia as we age. And sarcopenia is defined as the loss of lean body mass associated with age. And studies of typical aging, again, this is really interesting to me as I age, show that people will reach their peak strength typically around age 30, and then they will lose strength fairly equally every decade thereafter with a bigger drop-off at 60. In general, according to what I read, there's a decline in both muscle fiber size and number. There's no consensus on whether there's a selective loss of specific muscle fiber types. In general, aging is associated with a greater decline in lower body than upper body strength and extensor compared to flexor strength. One author asserted that there is a much greater decline in strength than muscle mass to the tune of the decline in isometric knee extensor strength in typical aging, maybe as much as 55 to 76%. So what does this mean for our patients? I mean, it means they need to be active, they need to stay active. Ways to mitigate the impact of this are by staying strong and eating a healthy diet. People may experience accelerated and early sarcopenia related to disuse, inflammatory conditions, other medical issues. And I think it behooves us to really be talking to people about this throughout their lifespan. The second one is motor planning and cognitive demands. And again, I'm using anecdotes from clinic, but it's not unusual to have a patient come to me and say, I am using so much cognitive energy when I walk that I can't attend to an obstacle in my path. I can't think about anything else. Or I'm so worried about where I'm going to walk tomorrow that I lie awake in bed at night and visualize it as a way of sort of planning that event. And this is supported in the literature. We know that we need to use attention, executive control mechanisms like attention and motor planning resources to help us with walking. And studies have shown that in post-stroke adults and adults with mobility impairments, they can have overactivity of their prefrontal cortical areas of their brain. There's thought there is a ceiling of available cognitive resources, and this is supported in cognitive research. So people with cognitive impairment who have demonstrated cognitive overactivity as they reach kind of the threshold or the ceiling, their performance tends to fall off. This has also been demonstrated in walking. And this is called CRUNCH, compensation-related utilization of neural circuits hypothesis. And what do we do about it? I mean, I think that we consider things like bracing, assistive devices, we acknowledge it. And I think it's just an interesting thing to consider when we talk about energy conservation and pacing. Next, cardiometabolic issues. We know that our patients with spinal cord injury are at increased risk of losing lean muscle mass, gaining fatty tissue, having other metabolic conditions that impact their overall health and their mobility. This is also true in spina bifida, and we've seen it in adults with CP. We know that this can be hard to measure. Many of our patients may have a body composition that's not healthy or that predisposes them to other health conditions. As another speaker said, many of these adults didn't live this long in the past, so we're sort of writing this book as we live it. And so I hope to be more attuned to this with my adult patients. We can't really measure it, BMIs are not accurate, but really engage them in a conversation around fitness programming, healthy diet, weight maintenance. Falls and fear of falls. In my clinic, we ask people when we see them, how many times have you fallen since your last clinic visit? But we don't ask about fear of falling. And in reading on the topic in preparation for this talk, maybe we should. Fear of falling is really high among people with neurologic conditions, that's not a surprise, but it's also associated with reductions in activity in spinal cord injury and MS, regardless of whether or not the individual was ambulatory or used a wheelchair, uses a wheelchair. There was a meta-analysis published in the archives of PM&R in 2020, looking at PT approaches to fear of falling. They reviewed 53 trials with 3,500 participants. A combination of gait and balance training was more effective than gait training alone in Parkinson's. Home-based exercise and leisure exercises were better than usual care for MS. There wasn't sufficient evidence to make recommendations in stroke and spinal cord injury. So what are we left with? I think we're left with, we need to be asking about this and probably aggressively recommending some kind of multifaceted approach because we know that people can restrict their activity in response to fear of falling. Pain and fatigue, obviously it's really common in our adult population. These often co-occur. In my experience, they're associated with development of early osteoarthritis and overuse syndromes. This is reported in adults with cerebral palsy. Murphy studied adults with cerebral palsy and reported an association between the presence of pain in weight-bearing joints and cessation of ambulation around age 45. Interestingly, 75% of the group who had stopped walking had done so by 25 due to fatigue, inefficiency of gait, or improved access to functional activities via wheelchair. And then sedentary lifestyle. This is a huge issue for our patient population. It's problematic for reasons I've already discussed. I think it's not just about an exercise program, it's about being active and that is hard for a myriad of reasons, especially when you live in a climate like ours in Minnesota where it's hard to be out for many months of the year. But we try to cobble together exercise programs with PT and TR assistance, but this continues to be a challenge for us. So this can all sound kind of depressing, but these are things I'm thinking about when I'm seeing a patient and then I am addressing them kind of accordingly or in response to these concerns. And so to that end, I do start talking to people about energy conservation and pacing early on, and this can be really hard. This can be a real paradigm shift for someone who's come from PEDS. People have said to me, Dr. Gettings, this is kind of depressing. You know, in the pediatric world, I was trying to achieve, I was working to attain all these goals and I'm understandably proud of having, you know, attained those. And now I come to the adult world and you tell me life's a marathon, not a sprint, and I have to pace myself and I have to maintain the strength that I have. And that's true. And we really, it can be hard work to have these conversations with patients. Also, when you're trying to create some sort of rapport, right, you want to be a trusted partner in their life's journey. And so this is a real delicate balance trying to have this conversation. And the other thing I say about adult work is we have these patients longer than the PEDS providers do, right? So we will follow these patients from 15 until who knows when. And so we really have to set up their, in my opinion, their expectations accordingly. Or, you know, I share these tools that were developed by other people with neurologic conditions as it relates to energy conservation and pacing, because I feel like it is, you know, people trust it more than when I say it. So these are the 10 commandments of post-polio care written by Richard Bruno and Nancy Frick and published in New Mobility in 1999. Richard Bruno had a history of polio and post-polio syndrome. I particularly like the first four. Listen to yourself. Activity is not exercise, but both are important. Break, don't break. You know, know when to take rest. And especially a crutch is not a crutch, meaning a crutch is not a sign of failure, that it's a tool, right? And I think the more we can do, and I know I'm among friends and I know I'm preaching to the choir, but the more we can do to de-stigmatize assistive devices, I think the better, because this is really can be a source of shame and it's a hard thing to address in the adult world. For me anyway, I'm interested in hearing from others. Another tool I sometimes use or reference with people is spoon theory, and this is a metaphor developed by a woman who has lupus, and it's sort of a, it's a way of describing the mental or physical energy you have in a day. And so here's a diagram kind of illustrating that. So you have so many spoons of energy a day and you quantify how many spoons are needed for a particular activity, and then you sort of meter them out throughout the day so that you don't run out at 10 a.m. And I will say these are conversations I used to have most significantly with my post-polio group, but I have these more and more with almost everyone. And honestly, I benefit from this myself. I, we also have had to get kind of creative as we talk to people about these issues, and you know, I've had some people say to me, I graduated from braces after orthopedic surgery, that's what the surgeon told me, and not to, or I graduated from using a device after orthopedic surgery, and not to vilify the surgeons, that was true, but again that makes for a very kind of delicate kind of balance for us later on if that person has changes in their walking. Sometimes it's not the patient who is resistant to a piece of equipment, but it's their family who tells them you're not ready for that yet, or you don't need that yet. And so we have gone back to motion analysis reports, you know, and energy expenditure with gait, and shown people, you know, you're expending three times the typical energy with gait, no wonder you're tired. Um, sometimes this is about just giving people permission to, as I think Kristen said earlier, to, to, or someone have a wheelchair, use a wheelchair. Um, we've also gotten creative with assistive devices, so some of our young adults now have balance dogs, and these are service dogs that wear a harness that is an assistive device for walking, but this dog also knows how to brace its back so that if this person is on the floor, he or she can kneel alongside the dog and push up off the dog's back to rise from the floor to a standing position. And I have a very, um, bright, uh, young woman, uh, who was like a triple major in college who said she never took a walk alone until she got a balance dog, because she finally felt safe doing so. So in summary, I talk to patients about these things, obviously I temper some of it, but I tell them if you want to preserve your mobility over time, you need to do the same things I need to do to preserve my health over time, right? We need to eat healthy food, we need to maintain our weight, exercise regularly. I, I think I need to be better about asking patients about fear of falling, especially if they're going to curb their activity and response, and try to get at that through some sort of multi-faceted program. Um, I'm really interested in this idea of kind of cognitive overload and this cognitive ceiling, and what does that mean for people? Can we get at that? Can we speak to that? Um, there's also a balance between activity and energy conservation and pacing, and that's really hard for patients because they have to decide that themselves. So I try to give them the tools. Obviously we try to address pain, and we try to de-stigmatize assistive devices and reframe goals. You know, I don't know that walking is always the most ideal or the safest goal, but it is something I thought would be a useful point of conversation today. So moving on to sexuality and relationships. So we are an adult clinic, we get asked adult questions, and we get asked about sex with some regularity. It's been reported that adolescents with physical disabilities have less sexual education, and we've certainly seen that in our clinic. They're at increased risk for pregnancy and STIs, and they're more vulnerable to abuse. In the U.S., those described as having severe physical disabilities may have fewer sexual experiences than their age-matched peers without disabilities, but interestingly those described as mild to moderate are not significantly different in sexual experiences than their peers without disabilities. So pulling from resources related to sexuality and specific neurologic conditions, in sexuality and spina bifida, it's been reported that the majority of adults desire intimate relationships, including sexual contact. 14% of men are able to father children. You start talking about sex, you start talking about parenting. Success is not surprisingly related to the level of the neurologic lesion. Literature suggests women with spina bifida are able to conceive and have children with a low complication rate. I thought this was an interesting report on young adults with CP. So they're looking at 74 young adults between the ages of 20 and 24. 80% of them reported physical problems with sex, 90% said sexuality had not been discussed during their rehab treatment, supporting what others have said tonight. They wanted information on a variety of topics, most importantly the impact of CP on sexuality and reproduction. This is an outcome study on individuals with pediatric onset spinal cord injury. It's a large group of patients injured before the age of 19. 59% of them reported sexual intimacy at least monthly. Periplegics were more likely to report sexual intimacy than tetraplegics. 21% were parents. Women had an easier time, not surprisingly, becoming biological parents, but they did report some complications with labor and pregnancy labor and delivery. Periplegics were more likely to be parents than quadriplegics, and parenting was associated with greater life satisfaction and social and occupational participation. And this is a table I just shared for your reference. So this lists stages of typical sexual development and considerations for pediatric spinal cord injury, recommendations for parents and health care providers to discuss with patients by age. So how did we respond to these questions in our clinic? Well, mostly we're just open to it. Whenever it's appropriate, when someone transitions to our site, we ask about it. We ask about sexuality concerns. And early on, we created a sexuality kind of working group, and we assigned roles. And so in our clinic, PM&R and urology address the medical issues. We also have an OB guy outside Gillette with whom we partner. So we're addressing things like spasticity management, pain, bladder, bowel, dysreflexia, skin, skin integrity concerns. We have OTs who will work with people on upper extremity tasks, such as self-stimulation or stimulation of a partner. And our OTs have also developed a parenting and child care module with our assistive technology department. And so they've created a self-stimulation and child care module, and so they've created recommendations and equipment for caring for an infant or a young child. PT will work with people on positioning and positioning aids. And I think it's important to note that we will work with individuals and couples. We also try to be really discreet with our orders. I mean, I don't want to embarrass anyone with an order. And so we'll write things like, you know, OT for positioning with ADL, significant other may attend. We have a certain lingo that we use, again, so that we're discreet about it. We have psychology on site, and we've partnered with the Institute for Sexual and Gender Health at the U of M. And in summary, related to sexuality, you know, we in PM&R, I would say, are uniquely able to address those concerns. But as with everything we do, I think it makes sense to address it via a team approach. It's really important for quality of life. And my purpose in discussing these two topics very briefly, and obviously with a lot of my own perspective and a little bit of information from the literature, is really just as an introduction to hopefully future conversations on adult issues. I will add, because we're in the adult clinic, and we have adults who have not always had the same social experiences as their age-matched peers, we worry about them being vulnerable in a lot of different types of relationships, not just sexual relationships. And so we are fortunate to have a therapeutic recreation staff that will work with people, and they do some education around safety with online activity, with relationships, and have given people some resources related to sex education and anatomy. Just sometimes what we're doing is just educating people on their anatomy. I mean, that's a little weird as a PM&R doc to be sitting with a patient with CP and showing them pictures of anatomy, but it seems to be needed, and it comes up regularly. The person who immediately comes to mind is a 28-year-old woman with CP who had just some really basic questions. So with that, my therapeutic rec staff did give me some resources to share with you today on sex ed and online safety, and then I have a lengthy bibliography, and that's all I've got. So thank you. Thank you very much for that topic, both of those topics that you covered. I agree. I try to tread delicately when talking about assistive devices, and one of the things that I think of is that I try to hammer into medical students rotating is that functional review systems is really important. So if somebody says, I can't get to the brewer's game because I can't get, you know, I don't have a way to get there, then we talk about, do you need a cane to say, hey, here I am, please don't run into me, or a walker. And I think the second point about your discussion on sexuality and relationships is we talk about bowel and bladder and really intimate things anyway, and just making sure we open our discussion to sexuality and relationships is just another part, and if we are comfortable doing it, then the patients can be comfortable, but if we don't ask, I think a lot of the times people don't know who they should be asking. So I applaud the work that you're doing, and I know I have a lot of work to do in my clinic. Thanks, I completely agree with everything you just said. We have a thank you for the talk. Question for anyone, what resources have you found helpful for transitioning to higher levels of education? And Dr. Jones responded, if you send us an email, we can follow up on that higher education question. All of us are available through the contact section on FISFORM, if people are familiar with that, absolutely send a question. You can also post that in the FISFORM contact, and I want to thank everyone one more time for being here and for all of the work that you put in. There's a lot of work that goes on, including how to present these roundtable discussions on Zoom, and I'm very grateful for you, and we are very, very timely because we are just about done. Thank you, Kristen. Thank you. Thank you, everyone.

transition of care

pediatric to adult physiatrists

challenges

unique needs

early preparation

adult physiatrists

primary care providers

patient involvement

insurance barriers

sexuality

changing equipment needs

guardianship

successful transition process