Healthcare Transition

– Good evening everyone, my name is Yetta Myrick and I’m the Health Information Specialist with The Parents’ Place of Maryland Tonight we’re gonna be talking about healthcare transition but before we get started, I’m gonna tell you a little bit about PPMD So PPMD mission is to empower families as advocates and partners in improving education and health outcomes for children with disabilities and special healthcare needs with a commitment to diversity and equity PPMD is Maryland Special Education and Health Information Center We’re established in 1990, we’re governed and primarily staffed by parents of children and youth with special healthcare needs We offer one-on-one assistance of family resource sharing, leadership trainings and military outreach We help families to better understand their children’s disabilities education and healthcare needs, how to communicate more effectively with schools, doctors, related professionals and agencies We help families to understand their rights and responsibilities under special education law regulations, we help families to understand their rights and benefits in healthcare systems, how to obtain appropriate services for their children, how to resolve disagreements with the school other agencies and how to connect with other community resources So what is health care transition? So first let me just give you a little bit of the data So transition age youth so that’s any youth across the board whether they have disability or not age 12 to 26, represent 20% of the US population And it’s estimated at 25 to 30% have chronic conditions Of that number, 85% of youth with or without special healthcare needs report not receiving anticipatory guidance on healthcare from their healthcare providers So 85% of youth whether they have a disability or not are not receiving guidance on health care transition So healthcare transition, excuse me, includes the process of moving a child to an adult model of health care with or without transfer to a new clinician and I just wanna let you know this data is from a National Survey of Children’s Health So what are the goals of health care transition? The goals of healthcare transition are to improve the ability of youth and young adults to manage their own healthcare and effectively use health services Also our goal is to ensure that there’s an organized clinical process and pediatric and adult practices to facilitate health care transition preparation, the transfer of care from pediatric to adult practice and the integration into the healthcare system And evidence shows that a structured healthcare transition process can lead to improve outcomes and health, the experience of the care and the utilization of care So basically families are their health is improving, they’re experiencing, better care when they’re going to see healthcare providers and they’re gonna then use that care more because it’s they’re having a good experience So here are a couple of questions that you could ask your doctor So during adolescent years, you can ask the doctor for example, how do I prepare my child to meet with you alone for part of their visit to become more independent Now I understand you’re given this population that might not always be possible, it could be a situation where you are still in the room but maybe you’re working with the doctor to directly addressing you’re supporting, your youth or young adult to engage with the doctor, right Another question could be at what age does my child need to change to a new doctor for adult healthcare? So full disclosure, I didn’t say this earlier but I think you know from the introduction about PPMD, I have a son who is now 17 so he is in that transition age, right And we’re starting to go through this process that I can say from my own experience than necessarily like the answer but when I was talking to my son’s pediatrician, I said, hey like, what happens? When does he need to leave? And my son has autism and intellectual disability and basically I was told, oh, well, he can stay here, we have 30 year olds, who have disabilities that still come here while that might be nice And initially before I learned about healthcare transition, I was like, ooh, like that’s a great relief but you know as I’ve gotten more, learn more about health care transition and I think about my son becoming an adult, right, he’s a teenager, he’s a youth I also have to recognize that my son is becoming an adult And so pediatricians as well and good as they are, right, they are specially trained to work

with a specific population, children up to a certain age, right and you but then when our children become our youth become adults, their bodies change, they have adult bodies So regardless of where they might be developmentally, we wanna make sure that they’re getting the best possible health care and having the best possible healthcare experience and the reality is and I know there’s a long way to go, right When we think about who are these adult doctors are gonna see our children and youth as they become adults but really be thinking about my youth, my child is gonna become an adult with an adult body And so you wanna make sure that they’re seeing the right doctor who can treat their adult body And then in term of getting back to these questions, before transitioning to that new adult, you can ask them, do you have any suggestions of an adult doctor for my child or youth to transfer to? And then also will you send my child’s medical summary to the new adult doctor? That’s another thing that’s coming up, right Without, we all know as parents and youth of children with special healthcare needs that oftentimes we are the case manager and we’re managing a lot of paperwork and all of that So knowing early on what is the process like in terms of getting that information to the new doctor will help you in your planning to support your child and youth as they transition So another thing I really like to talk about is this Got Transition So basically there is an organization that specifically looks at transitioning age youth and it’s called the National Alliance to Advance Adolescent Health And they have come up with, so they have medical providers, people who are working in public policy realm that really look at what are the core elements to transition and with these specific ages And so they basically did research and put this together And as you can see, it really talks about, okay, we’re looking at my transition policy and the tracking and the readiness and the planning and so on and so forth But at age 12 to 14, start having like discussion around like the transition policies when you’re looking at health care what is the process gonna be like and kind of starting to have that conversation understanding around what that’s gonna look like and then tracking the progress from ages 14 to 18, assessing skills so there’s some readiness tools that the Got Transition team has developed that I will share with you develop a healthcare transition plan, 14 to 18 because the whole point is that we want to start thinking about depending on development, it could be anywhere between 18 at the latest, 26 to get them transitioned out but you can learn more by going to the website and I will get provided you with those resources Other things to think about in terms of so what’s the difference, I mean, I think I kinda made it clear like from my own personal experience , it’s like, okay, how do I think about my son in terms of an adult being an adult and saying what are the differences in terms of pediatric versus adult care? So one thing to think about when you’re in pediatric care, the parent or the caregivers with the child or the youth for most of all of the visit In adult care, the young adult sees a doctor alone unless they agreed for others to be present I just wanna be very clear here, doesn’t matter whether your child has a disability or not, when they turn 18 and we’ll talk about this in a little bit later unless there’s certain things in place there’s gonna have to be like written agreements, understandings in terms of like your youth even if they’re 18, if they need support for you to be there to support them and to be looking into documentation supports things that you can do so that they are not going into those appointments alone because I don’t anticipate in my own situation that my son will be able to go in to see a doctor alone, I would need to be there to support him Another thing so parent or caregiver, normally in a pediatric care situation we’ll ask questions in adult care setting, it’s the youth, that’s asking the questions and explaining about their own medical history and pediatric care The parent and caregivers involved in making choices about the healthcare Again, when turn 18, it’s gonna be the youth choice and then the parent and caregiver helps make appointments and get medicines and pediatric care whereas again, it shifts when we get to adult care We’ve already kind of talked

about like the healthcare transition timeline So really want to encourage youth to ask their doctor questions about their health when they’re ages 12 to 13 obviously when we’re dealing with children and youth with special healthcare needs they might need some supports to help them, you maybe you can help them come up with a script to talk to the doctor that they can read from So really thinking about starting early when they’re 12 or 13 help teen practice making doctor’s appointments, ordering prescription refills, you work with your teen and a doctor to make and share medical summary So again, like these are some things that you could be thinking about doing with youth and there are supports out there to help you We like already kind of talked about in general about turning 18 but your youth becomes a legal adult at age 18 It’s important for you to understand how this can impact their healthcare So you really, so again, like when they, when your youth turns 18 the doctor speaks with them, not parents about their health So health information and medical records are private or confidential and cannot be shared unless the youth adult gives the okay So if the young adult wants medical information shared, the doctor will ask for a form to be fill out and that will then allow them to share medical records with you and for you to be with them during appointments Obviously on a case by case basis, you have to work with your doctor to figure out the best way to do that depending in your child or use needs But again, if you start having these conversations now, you can kind of figure out like where you need to go, who you need to talk to to get these things in place So another thing that’s really important to be thinking about in terms of healthcare transition I know a lot of here that, okay, when the child becomes or youth becomes an adult especially with children and youth with special healthcare needs, the thought has always kind of a go to guardianship But I want you all to understand that there is an alternative to guardianship called Supported Decision-Making and it allows the person to keep their decision-making authority without appointing a substitute decision maker So how does it work? So people use trusted friends, family members and professionals to help them understand the situation choices they face So they may make their own decision as a means, really to increase their self-determination by encouraging them and empowering them to make their own decisions about their lives to the maximum extent possible and there’s a national resource center which is what is quoted here on supported decision-making In Maryland there is a supported decision-making coalition of which parent’s place in Maryland I serve on that coalition but there are other, there are other different groups across the state of Maryland who are engaging in this work and we’re trying to figure out and not just disability but like we think about elders, all these different types of groups to really look at how we can make supportive decision-making law and Maryland full disclosure I live in Washington DC but I would work for PPMD because my son is in a non-public placement and so what I have learned in my work in DC like we have supported decision-making as a law And so the National Resource Center has all this information about like what’s going on with supportive decision-making in states all across the country but we really wanna have families not think the guardianship really truly is the only answer And it we want you to really be thinking about guardianship, supportive decision-making all the power of attorney, all these things in between as tools really to support our youth and young adults so that they can be self determined and make choices on their own And then more about supportive decision-making, a person may select a person or a team to help them think through, decide, communicate and basically make these decisions and supporters are gonna be asking, listening, providing advice and translate and respect the person’s decision But and this is very important, the person retains the right to make a decision when a person has a guardian over them, they no longer can make decisions Someone is making decisions for them and nationally, internationally, it’s recognized to be the best practice that preserves the civil rights of people with disabilities and eliminates the needs for substitute decision-making maker in many cases So how can you support a decision making in healthcare? Supporters can help a person receive information in a way that can help them to understand so they can make an informed decision So it can be reasonable accommodations on the ADA Advocate for person to have more time to make a decision So maybe they, maybe a procedure needs to be made, right,

and they really don’t know, they might need extra time to like really think about it and wait a decision, it might take extra time for you as a supporter to support your youth for example to understand what’s gonna be happening so they can make an informed decision that too is supported decision-making A team meeting, you can help them like call a team meeting with regards to the health care and supporters may use HIPAA forms to obtain information needed to help with decisions So those are just some of the ways that supported decision making could be used in healthcare Another resource and tool I’d like to share with you in addition to the Got Transition resources which I’ll get into a little bit deeper about is the charting of life course framework and they specifically have tools, I hope that all of the families who are listening to this have access to Charting in the Life course which really is a tool that was created by the University Centers for Excellence and Development to Disabilities at the University of Missouri, Kansas City to help families and people who work with families to really be thinking about the what does the best life look like? Like everyone really deserves to have a life where they are happy and can make choices and decisions and so Charting the Life Course really thinks about that, thinks about that, what is it that you want? What is it that you don’t want right out of your life? we can use the Charting Life Course materials on ourselves as we’re thinking about certain things but we can also use them when we’re thinking about our children and youth But very specifically as we think about healthcare transition and supportive decision-making, one it could be used for a variety of different things that you might be thinking about but this one specifically is about supported decision-making and it really helps for people to understand the options and communicate the decisions And it’s broken down into different sections So in the middle of the star, you’ll put what it is is you’re focusing on So in this case, we’re focused on supportive decision-making, right But then what are the personal strengths and assets for supportive decision-making? So, like it says up top might be hard for you to see but decision-making is the ability to communicate once needs and wishes, right If my, that might be that’s a strength, right But then also think about all the different relationships that play into supported decision making what are the eligibility supports that are available? What are the technologies? What are the community resources that all play into supported decision-making? So this is just one way to use the tool if we could also use the integrated star for example, to create a star around like transition, right And like, what are the strengths for example of like my son and listing those and like what are the technologies is? So it’s really taking these, I don’t wanna say like complex thoughts ’cause it’s not really, it’s really taking these themes in our lives and breaking them down into the smaller pieces So it’s more digestible right and makes it easier for us to really start to plan and think There also are a couple of other tools so they have broken it down into like some supportive decision making like some options with regard to supported decision-making and I apologize the image on the left, I can not fly for me remember this tool but it’s really disappointing like decision-making options but it breaks it down in terms of like daily living, I cannot think of the word that I want to use but it really breaks it down as a tool So that you can say, okay in daily living kinda aside if for where I want to work And so it might be that like for that person, I can decide with no support but it might be a situation where that person needs support with the decision or to the right, I need someone to decide for me, right So really like looking to see when you’re thinking about all these different areas of life, how best to support that person So these are just a couple of other extra tools Now getting back to the Got Transition If you remember, we were back on the six core elements, there was something about like transition assessment So the Got Transition team has created these transition readiness assessments, their transition readiness assessments for the parents to complete, there’s also transition readiness assessments

for the youth They have also created some for youth with intellectual and developmental disability that can be completed So a parent can complete that with their youth but really wanting to look at again, similar to that SDM Charter Life-Course form is when you look at my child can explain their health needs to others and so a parent might say, no but then on the use document, they might say, yeah, I can It’s like, oh ,really? You could have, again, like kind of starting a conversation around it They’re also on the Got Transition website or some sample IEP transition goals So I think oftentimes we think about healthcare, we forget that there is a place for to be on the individualized education plan So for example like can your youth like say the name of their learning difference or disability Can they name two or three people who can help them with their intellectual differences and they actually provide a sample goal And all of these resources that I’m sharing with you tonight are free and families can access The tools so larger kit that got transitioned has just released is their new family tool kit and I am happy to, I’m proud to say that I was a part of the advisory group that helped them to develop So some of the tools that I’ve already shared are in here but most of them I think but it includes 10 healthcare transition resources to help youth and caregivers and parents to help basically facilitate transition from pediatric to adult healthcare As I said earlier, a lot of these tools or when you think about the National Alliance they’re looking at adolescents as a whole not just youth, children and youth with disabilities but this is a good place to start, right Like all of our children regardless of whether they have a disability or not, go through transition And so this is a great place really to look at transition, to be thinking about it to start planning and then you can always ask questions in your group I know there are other parents who’ve probably already gone through transitioning to provide some resources support for you so really ask questions you’ve reached back out to parents please and help you to get the resources and the tools that you need to facilitate the transition process And then just a couple of helpful websites, I already mentioned the National Resource Center for Supported Decision-Making, the Charting the Life Course tools specifically on SDM as it relates to healthcare transition But as I said, like there tools that are on the website, it can be used far beyond supported decision making, you can use Charting the Life Course If you have a little one at home and you’re just trying to like work through, okay, this is my goal for my child and like, how am I gonna get there and start to think and plan out and think about all the pieces, there are videos that show you how to use all the tools there and then also as I’ve already shared the Got Transition resources and website So for more information if you have questions, you can reach out to me, again, my name is Yetta Myrick, I’m the Health Information Specialist at Parents’ Place of Maryland Really appreciate you all’s time Hope everyone is safe and well