Chapters Transcript Video Down Syndrome: Transition to Adulthood - A Pediatrician's Perspective And so today I have the honor of introducing doctor Spi. Doctor Noemi. Spi is an assistant clinical professor of pediatrics at U CS F Benyo Children's Hospital Oakland and works in our primary care clinic. She's the medical Director of Charlie's Clinic, a Specialized Down Syndrome primary Care Clinic where she works tirelessly to advocate for families and patients. She's also the director of the Developmental and Behavioral pediatrics, resident rotation and serves as chair of the U CS F Pediatric Advisory Task Force Center for Community Health and Engagement, as well as an advisory board member for the Down Syndrome Connection of the Bay Area amongst many other leadership roles. She has been awarded the Yasmin Ahmedi Award for Outstanding compassion care and the Outstanding Community Based Attending Award as well as several other awards that reflect her commitment to community health. She has mentored many trainees in their research and educational endeavors and one of my favorite mentions in the CV is that she was previously a content matter expert for Sesame Street, which is really cool and she was educated at Boston University, followed by medical school at the University of Pennsylvania and completed her pediatric residency here at Children's Hospital, Oakland and has since been a cornerstone of our primary care department. So I will now hand it over to Drazi. Thank you. Thank you. Thank you, Sheela. Um Good morning, everybody. Uh I am so sorry, I'm not doctor Patel. Um She is uh not feeling well and so I'm stepping in, um I was supposed to give you this grand rounds on March 21st World Down Syndrome Day. Uh But instead I get to give it to you on Valentine's Day. Um So either way uh we get to spend time together and learn together. Uh Today, I get to talk to you about transition to adulthood uh as a from a pediatrician's perspective. And um I have nothing to disclose. And uh my objectives for today are to review some key aspects of transition to adult care, identify ways in which as pediatricians can support a patient um who has intellectual developmental disabilities in the process of transition. But we also think about uh uh kids with complex care needs who don't necessarily have a developmental disability. Um And you know, some of the same concepts apply to uh um healthy teenagers uh who are making the launch. Uh We're going to discuss different options for supported decision making for individuals with ID D and review resources that can assist patients caregivers and ourselves in achieving a successful transition. I'm gonna start with this disclaimer from the very beginning, this talk is not a silver bullet to solve this serious issue that we have around lack of smooth transition to adult providers in this area. I do not have a list of providers who are adult providers who are eager to care for patients with ID D who are transitioning to adult care. I'm in the same boat as you. We are building it as we're sailing. I have not found great solutions. Um but I have um a lot of core thoughts and principles that can make this very imperfect process, um more successful and uh more supportive for uh the individuals who are undergoing the transition to adult care and their family members. So um there are an estimated 750,000 youth with specialized healthcare needs who enter adulthood each year in the United States. And more than a third have developmental, emotional or behavioral conditions such as A S D A DH D speech and language disorders. There is a broad range of transition issues that will come up obviously medical care including both primary and sub specialty care as well as the overall coordination of care that we as pediatricians have held uh for 18-21 years. There are issues that are outside of the medical uh care that do still impact health like postsecondary education, employment, legal decision making, especially for individuals who uh may or may not have the capacity to make legal decisions independently, issues around social inclusion. We are a society who segregates individuals uh with developmental disabilities and uh uh neurodiversity. Um So, um how do we do better at including our adults who are neuro diverse into our society? Behavioral management. Uh For those who struggle with behavioral challenges, ongoing acquisition of functional self, fair skills, self advocacy, one's ability to um talk about what they need in order to be successful as they navigate uh the world. And then the care give caregivers own coping skills, including anxiety around the transition denial that their little baby is actually a fully grown adult that that's making the lunch into the adult world. Um Perhaps some guilt and uh uh ones a aware awareness of their own mortality. And there are many barriers and uh I know I'm speaking to an audience that knows them, but there's limited training uh for ourselves as well as for our staff. And there's typically a lack of identified providers who are identified as being responsible for supporting this transition. It's nobody's job basically. And so like any job that's nobody's job, it ends up falling on the primary care doctor. Um there can be financial barriers to successful transition um and financial barriers for us who is gonna reimburse um the hard work of coordinating care and making that transition successful. And is there ever enough time in the fantasy of the 15 minute visit? Um There can be anxiety on behalf of the family of around planning uh for future health care. And there is a general lack of a developmentally appropriate tools that can assess one's readiness for that. As I mentioned in the very beginning, there is a limited availability of adult providers with whom to arrange a smooth transition of care, both primary and subspecialty care. Um There are workforce shortages and then the systems are so confusing and it's so confusing which systems continue and which systems end and at what age and what happens next? Um What we know from the literature is that overall few youths that specialized health care needs that receive adequate uh transition preparation. And of course, the situation is worse for uh racial and ethnic minorities as is everything in health care. Uh uh There's a uh yeah, we know that young adults including those with uh who have specialized health care needs, have poorer access to care than Children. And this age related decline once again, has been shown to be worse uh for Hispanic and Black youths. And uh uh youth with specialized health care uh needs who come from low income backgrounds are at higher risk uh than other youth of experiencing um gaps in access to care as they enter adulthood. Um Transition is complex. And I think that my, one of my main points for today is transition is a journey. It's not a one time event. And the best practice is to start early, to begin, think, thinking and talking about transition in the context of other areas of transition into adulthood. Some aspects of transition involve finding new providers. Um but the some others involve preparing a young adult to be more independent with issues surrounding their health and this will require multiple conversations. My advice is to start early and to schedule visits where the sole agenda is to focus on this, to address that lack of time that we always run into, especially with they used with complex health care needs um where the visits end up uh covering so, so many other health issues, the American Academy of Pediatrics offers a transition algorithm with a rec uh these are recommendations for clearly spelled out practice policies for transitions. And uh the idea is uh for an ongoing review of the caregivers and the youths readiness uh for transition throughout this process. The algorithm is included here. Um And it starts with, is the patient over 12. Yes, start thinking about and talking about transition. Um Is the patient around 14 to 15, you better have been talking about transition um and have completed some of the uh steps listed here. Um Uh is the patient over uh 16-17. Um you're there's more actions uh to take and it kind of guides you by age range as to uh what things uh a a primary care provider should be thinking about. Um Again, some literature on the topic shows um that uh when it comes to individuals with developmental disabilities including autism. Parents may be less likely to start planning for the youth transition. Uh if the child needs more assistance with functional self-care skills. Um and uh the need for a greater assistance with self care skills is associated with lower parental expectation that their kid will live independently by age 22. And the presence of behavioral problems is also associated with lower odds of parental expectations that their kid may live independently. So the population of individuals with autism and uh uh intellectual and developmental disabilities may be one where we have to be particularly deliberate about bringing up these questions and uh presenting them as perhaps food for thought. Um uh from an early age of, have you started thinking about what it might look like when your kid is an adult? Um And uh and what do you think your kid wants? And uh what do you want? And uh uh have you talked about this with your extended family? Um Let's remember that we are accompanying families through this journey. Uh We are not the captains of this ship and we are not the ones who make the decisions. We are um sitting on their board of advisors and uh perhaps um uh are uh well, I'm Italian. We're, they're, but not necessarily um uh making any specific decisions. And so when we think about the patient's goals and the family's goals, we should be asking what are the individual's goals and aspirations. We ask so often what the family's goals are for the young person, but have we stopped and asked the young person themselves? Um are they hoping to uh pursue higher education? And let's remember that there are um several higher education programs that support the needs of individuals with intellectual disabilities in our area. Um Are they uh eager to be employed? And uh what might be a career that interests them? Uh What are their interests and affinities? Now, what are their strengths? What are they really good at that could translate into successful employment? Um Have they talked about dating and relationships? Are they interested in dating? Are they hoping to be in a relationship? Um Have they been talking about how badly they want to move out or um on the other hand, do they um seem to express that they're hoping to continue to live with their parents uh for the foreseeable future? Um Are they asking for more independence? Uh whether or not they are ready skills wise to be granted that independence, uh are they seeking it out and how can we support them? And then of course, we want to understand the family's goals around independence and financial security and safety, which is often a big concern. And so, um how do we align our counseling as well as our community resources uh with the individual and with the family's goals? So I'm a doctor. So I start with discussions around how do I take care of my health? And, um, one, some of the questions we might be asking ourselves are, what, uh, types of assistance does the young adult need when they see the doctor? Um, as the young adult practice talking to the doctor? One on one. Um, I definitely notice within myself that, that, um, uh, especially when pressed for time and when thinking, hm, I doubt that this kid is, uh, you know, having sex or doing drugs, um, uh, that I may skip the, uh, one on one, uh, session with a teenager. And that's, that's really depriving that individual of the opportunity to practice talking to the doctor one on one. And maybe, um, when we talk one on one instead of going straight to sex, drugs and rock and roll, I might ask them about friends or I might ask them about anything else that they want to talk about. But the idea being, has the individual practice talking to their physician or a health care provider, one on one without the scaffolding of their parent. You wanna notice is the parent answering all of the doctors questions at the appointments? Is there a chance that the young adult could answer some of their questions and then self reflection. Who am I looking at when I'm asking the questions? Am I looking at the parent or am I looking at the individual about whom the questions are? And what can I do as the health care provider um to give the uh young person a chance to take a stab and answer those questions. How does the young adult communicate with any available communication support about pain or discomfort? Um Is this the most effective communication method that they could access? Um Is this someone who is very verbal and can tell you my head hurts? Is this someone who maybe signs my head hurts? Is this someone who uses augmentative communication, whether it's uh a textbook or an augmentative communication device is something around their body and their health and discomfort programmed in that AC C device are their goals within whatever system is supporting their augmentative communications to target specifically self advocacy goals around their body and their health. If we don't have language around communicating health symptoms, how can we expect a young person to be successful in expressing um those needs? So, one, it is important to ask, how does the person communicate? We have to remember that uh maladaptive behaviors uh like self injury, uh or increased aggression or general behavioral dysregulation can be signs of something being uncomfortable. Um And one wonders, you know, could the young person uh be given greater support um in communicating their discomfort in ways other than uh these maladaptive behaviors. Does a young adult know how to call a doctor or dentist to make an appointment? Isn't that a good skill to know and have? Um Does the young adult know what to do if they feel sick. But the doctor's office is closed and again, I'm talking about this with the lens of someone with a developmental disability. But these are good questions to ask our teenagers in general. Right. Do they know what medications they take and why? Certainly they might still need some support in taking those medications. Um, but shouldn't they know what they take and why? And could they be given more independence with taking their medications? Whether it's that? On Sunday? We sit down and put our medications in the pill box together and we review what they are and what they're for and we also look at the bottle and see how much is left in that bottle, um, and discuss, uh, whether it might be time for a refill or not and then have reminders and using all of the assisted technology that we all benefit from these days, um, to provide reminders to the young person to take their medication. Does the child know, uh, or young adult know if they have allergies to foods or medications? These are things that are worth, um, kind of teaching purposefully and rehearsing because they are life threatening issues. Um, medical ID bracelets, um, uh, can be helpful, uh, for those who cannot tolerate a medical ID bracelet slit, there can be, um, medical ID tags that can be put on shoes, um, uh, on the laces of shoes. Um, sometimes it can be difficult to pursue a medical ID bracelet though. Uh, the Regional Center can fund them if insurance doesn't cover them. Um, but a lot of the same information can be printed on a tag. Um, and these tags can be easily made at your local pet store, um, for very cheaply and they can include information about the person as well as any other salient information uh that you might want to have. Um, I wanna give a shout out to the Children's Hospital of Philadelphia Down Syndrome program or S 21 program. Um Doctor Alyssa Siegel has worked very hard on uh developing some transitional worksheets um that uh can scaffold some of these conversations and I've definitely given them to families as a little bit of a homework as we uh begin to talk about this uh independence uh with uh knowing about someone's health and uh uh what one takes and why and when um you'll notice here a QR code, um everything that I'm putting on here is a screenshot. I have put a QR code so that there is a link uh for how to access these as actual worksheets. Um And the, the slides um will be available after this talk, so you can also access them in Alameda County. Uh We have a wonderful CCS program and um the Alameda County CCS program has also developed uh some similar worksheets that uh address uh where in the scale of readiness, a young person is, uh, with regards to a lot of, um, these areas, um, including, um, can be done alone or, uh, need some support or absolutely, um, does not know how to do this and what might be a necessary action, uh, to address this. I love that they're both in English and in Spanish. And again, here is the QR code and then let's remember that not everything about health is the, uh, medication, Western medicine, medication, right? So much of it is healthy nutrition and healthy exercise. Um I take care of individuals with Down Syndrome. Um uh and uh of course, uh individuals with Down Syndrome are higher risk for obesity. Um So uh healthy nutrition and exercise is an area uh where uh we provide a lot of counseling. So how does a young person uh do with choosing healthier drinks and food options? How do they do with portion control and what support if any might they need uh to uh do a little bit better with this? Do they have healthy exercise habits? Are they modeled in the family? Do they need some visual reminders of portion control or visual schedules for exercise? Can they cook themselves a meal? If so, can they cook themselves a healthy meal? Right. And, and just recognizing that if, if I don't necessarily know how to cook or cook a healthy meal, I might resort to uh less healthy options um uh that are easily available like snacks or fast food. Um I adore these videos that they were developed by the Chicago Adult Syndrome Clinic, uh led by Doctor Branch Coin and Doctor Katie Frank. Um uh these videos uh are a feature um uh adults with Down Syndrome um who are um teaching uh their peers about a number of um uh health behaviors. And as you can see, there are topics including fruits and vegetables and grains and serving sizes, tips for healthy eating at buffets, staying hydrated uh video modeling is a fabulous way of um getting a person uh who's a visual learner um with a developmental disability uh to uh see themselves or someone who looks like them um do something and, and learn it and practice it. Um So you can access these videos, but also you can take videos of the young person as they explain what a healthy plate is like. And then uh they may enjoy watching their own homemade video of themselves uh teaching everybody else about healthy habits. Um And again, here's the QR code to access these videos and of course, reproductive health is a part of good health. Um How much support does the young man or woman need with hygiene? And could they be uh more independent? And what can we do? Um to help them be as independent as possible is all they need some sort of uh visual uh uh task analysis breakdown uh that can guide them through the different steps. Of taking a shower or brushing one's teeth or wiping, uh one's bottom to completion or changing a pad. Um Of course, the more independent we are with anything that has to do with our naked and vulnerable body. Um, this is just protective uh against uh abuse and we know that individuals with developmental disabilities are at least four times more likely to be victims of uh sex abuse um than the general population. So, if they don't need anybody in their business, then it's protective. And if they don't have this learned compliance around, it is normal for other adults to be around my naked body. Um then uh uh that will be protective. Does a young woman know how to track their periods because they recognize when their periods are off and that they either need to seek care for irregular periods or they need to seek care because of missed periods and they need a pregnancy test. Uh Does the young woman know how to check breasts? Uh their breast, her breast for lumps. Does a young man know how to check his testicles for lumps? Um Again, these are routine health care recommendations that we give to adults. Um Are we giving those same recommendations to uh young adults with developmental disabilities? And how can we explain this and how can we make this a part of one's routine health care? Um Does the young per uh the, does the young person know that they can talk to a safe adult about issues related to their genitals. Are there one or more safe adults that have been identified as being available um uh to provide troubleshooting and assistance. Um If something comes up with their private areas, let's remember. And this is not a talk that I'm giving today um that there are a lot of myths around uh the sexuality of individuals with intellectual disabilities, including that they are asexuals or hypersexual or that they can only engage and sexual activity in an inappropriate way. All of these are myths. The truth is that individuals with developmental disabilities are often uh segregated away from opportunities where they can um learn about their sexual health and um uh they are deprived of opportunities to learn and if we provide adequate uh information and instruction, um then they can be successful. So, has the young adult received any type of sexual education through school or other means? Do they understand the concepts of private and public? And uh those are much more complex uh concepts than uh one would guess, right? Because for example, the bathroom is private. Sure. But is a public restroom as private as your home bathroom, your bedroom might be private? Sure. But if you have a roommate, is it as private? And is it private if the roommate is outside of the room versus if they're in the room? Um So specifics around what makes places private and uh activities, private or public are important. Does a young adult understand the concept of consent? Are they ever allowed to say no in other aspects of their lives? This is a really big question for our individuals with developmental disabilities, right? Uh We, we don't allow a lot of nos. Um I actually have a practice of um including within parts of my exam things that I don't actually necessarily need to do and I ask for permission. And if I get a no, I say, well, you have agency over your body and you said no, so I'm not gonna do that because if you say no about something that has to do with your body, then it has to be no. What about the parents? Are they offering or caregivers or family members? Are they offering the same opportunities? Has the young adult uh uh been talking about crushes, relationships, sex. Um uh Sexual health is a, is a human, right? Um How are we supporting them in, in navigating these, what supports are available um to um um help a young adult uh who is uh learning about uh their reproductive and sexual health and uh uh their bodies. Um Let's not forget the I E P. Um There can be goals around describing personal boundaries um and consent. Um There are books and talks um and I have been amassing them on our Charlie's clinic website and this QR link will take you um to that page and then of course, there can be O T and other therapists including um uh talk therapists who can have more time to uh focus on these issues. Um If this were an area um that the young adult is really focusing on As we gear up for transition and medical transition, specifically, it is helpful to make a to do list. Um it might include what special specialist does the child see? And can we make a plan together about transitioning these specialists? Um if we have a new issue that comes up when the young person is 18 and our plan is to continue to take care of them until they're 21. Could they go and see that specialist in an adult setting as opposed to a pediatric setting to begin that transition with specialists that do not have a long term relationship with the individual. My example is a young person with down syndrome who hasn't been to the audiologist in a while and they are 18, 19 and it's time for them to go back and they do not have an existing relationship with our audiologists. Can they go to an adult audiologist and test out the waters there? We might have the specialists who are most involved uh partner with us to make a transition plan and those may be um the specialists that we transition a little bit later on. Um I like to be the last person um uh to uh to transition out. Um, what medications does the child take? Who prescribes them? And does the family have enough supply to bridge them through the transition? What therapies does the child receive and need? And will they be able to continue after the transition? Uh, for example, uh, behavior therapy is a benefit covered by medical through age 21 If they are reliant on behavioral support and they're about to turn 21 who will continue to fund and support that behavior therapy. It might have to be the regional center. The regional center may need to be involved in this discussion from early on and be reminded that this is no longer gonna be a benefit covered by insurance. Same with CCS medical therapy unit, therapies if those end and we need to continue to need P T and O T who is going to provide those therapies and have we made a plan for that? How does a young adult get to appointments right now? Specifically transportation, if the plan is for them to begin attending appointments independently, who will get them there then? And um do we know about pa transit or logistic care through uh medic or whatever other transportation support may be needed? Is the young adult prepared for a health emergency? Do they have a medical ID uh with information um Again, the medical I DS that are covered by insurance have a QR code basically a code that can be accessed that pulls up all kinds of information and, and if not, then do they have this information stored somewhere that is easy to access such as their phone. And then this is a complicated question that I have to ask, uh caregivers and we do have to ask even though it's uncomfortable. And I feel that in this, the pandemic has given us a kind of an opening to bring up these difficult questions. If you, as the primary caregiver becomes sick or incapacitated, you are holding so much about your kids' health in your head. Have you downloaded this information anywhere else? And does someone else know where to find this information? Right? Um Or are you the of this information all in your head? Once again? Um Thank you Children's Hospital of Philadelphia for uh creating more of these worksheets that can help with um these health care plans and transition plans and these to do lists. And as we think about choosing an adult provider, this is one of the questions I get asked the the the most uh who should I go to? Do you have anybody to recommend? Um And uh as I told you in the very, in the very beginning, um I don't have a silver bullet for this. I I know of a couple of uh people that have expressed interest in some of the local F Q H CS. Um But there's not enough people and not enough of a workforce um to support all of our young adults who are transitioning. So instead of telling everybody, oh, you must go to doctor. So, and so I remind people that this is not a marriage that it's important to start somewhere and then assess if it's the right fit. Um I ask caregivers to think about what they like about their child's pediatric care. What about your child's providers? Uh makes you like them right? Makes this feel like a good fit. Is it the accessibility? Is it that they know your child's history? Is it that they make adequate time for you? Is it that they look at you and your kid in the eye when they're talking to you? Because once you have actually put these things down on quote unquote paper, then you actually know what you're looking for in an adult provider. Um for us, the pediatric providers, the recommendation both from the A P as well as from yours. Truly is for your last note, when you see a kid to be a really complete note that can be sent to the adult provider that has a thorough review of the child's health conditions. Um Nobody has time to read through a full medical record. You will be the most familiar with what has happened to this kid over the course of their lives. What pediatric specialists they've seen um some systems uh throughout the country use a complex care note akin to the asthma action plan that outlines a plan for each system and allows for easy sharing across specialties. I know that this has been um an area of work within uh U CS F. Um And I know that there exists a note template to facilitate this. Um But if you're not working within the U CS F system, um and or if there isn't um such a complex care note that is so easily accessible, um This is something that's really, really useful, right? To um have uh a note that the family can hold and have. That says as at the time of transition, my kid had these health, active health issues um for these active health issues, maybe these are the medications that were tried and didn't really work and why. And these are the medications that they're currently on. These are the specialties that they were following with. These are the ones that we've already transitioned. These are the ones where we're looking for help and such, right? And then that note can, can be such an amazing sign out. Ideally, there will be a warm sign off over the phone as well, but that is not always possible. Um In transition documentation, as I was mentioning, it's important to include pediatric specialists and therapists involved in the care uh baseline functional and neurologic status, right? What can they do at the present time so that if there's a change in function, um uh there's some documentation there of what they were doing before. If there is uh information around the patient's cognitive status, including formal testing results um included. Um if you have copies of the last triennial from an I E P or a neurodevelopmental evaluation from somewhere included in your transition note that can be quite helpful. Um you know, the patient's own health education uh history. Um how much they understand of their own health conditions? If there are specific emergency treatment plans in context, maybe someone has a metabolic disease or they have hypopituitarism and they have a very specific emergency treatment plan that should be included in the transition note. And then, you know, this is so important and it's, you know, this black box that I have been trying to open uh since uh basically, since I graduated residency is what D M E does the patient receive and where do they get it from? Who is responsible for fixing it, who is responsible for sending it? Uh This is where you can come together with your um uh health care team within your primary care office because that is important. Where are they getting this suctioning device or supplemental oxygen or uh gastrostomy tube formula or whatever from? Right, because someone else will have to order it, someone else will have to reach out to whatever the company is um to um get things addressed if there are advanced directives, um they should be included. Um and then any information around decision making proxies should be included. And then of course, the patient's communication preferences um as well as uh accommodations needed uh for communication and clinical care should be included. For example, the person uses an assisted communication device that if they need to use a ac most likely they will need slightly longer time to be able to get their ideas out. That should be accommodated in the time of a visit because otherwise either you'll be super frustrated as a provider because you didn't have enough time scheduled or issues will not be adequately addressed. Speaking of making decisions, um one of the questions that we asked together is, does the young adult have the capacity to make their own health care decisions? And if not, does the parent have the legal standing to continue to assist their child with decisions once they become adults, are there differences in opinions between patient and parents and between the two parents that can be tricky, right? And that might require the support of um social work or the Regional Center case manager and, and kind of or you know, joint visits uh with uh both uh parents um to try and, and mediate these differences. There are some core principles around the legal decision making. One is self determination, the right to participate in one's own decision making. The other is dignity of risk, the concept of self determination and the right to take reasonable risks that are essential to dignity as well. As self-esteem and should not be obstructed by excessively cautious caregivers concerned about their duty to care. So this is where we take a moment and take a breath and do a biased check. How do I as a provider feel about this? And how might it impact my own counseling? How many people do we know in our own lives who are not, who do not have developmental disabilities and make health care decisions for themselves that we might question the wisdom of and are they allowed to make them, are people around to date other people who are terrible for them? You know, and, and, and might end up hurting their feelings? Right? Um Are people uh who don't have neurodevelopmental disabilities allowed to say I'm not gonna go and get that blood test done because I don't want to do it right. And, and certainly we want to support the young person with a developmental disability in understanding why something is recommended. And, and there should be uh some way of supporting decisions that are based on informed consent as opposed to perhaps anxiety and a fear reaction around what the uh procedure might take. Uh But are we allowing some degree of dignity of risk? And so there are actually a variety of ways in which individuals with um developmental disabilities can be supported in making decisions. There's different degrees of intensity per se. Um One is uh what's called supportive decision making and in with this approach. Um People with developmental disabilities retain their decision making capacity and there are selected family, friends and professionals who have been identified as being of support and will support the individual to continue to make their own decisions. This can be informal or it can be a formal signed agreement. Um Most of us uh people without intellectual disabilities do some degree of supported decision making, right? We might run some ideas by other people. Those people are, are trusted people and we trust their opinion. Um So this is this can be just as informal or it can be a more formal signed agreement. There can be durable powers of attorneys. These are legal documents. They need to be witnessed by a couple of unrelated individuals. So they need to be notarized and they outline who can make medical decisions were the person to lose capacity to make decisions uh as determined by the treating physician um or can step in and co make uh decisions. Uh These can be medical durable power of attorney. Uh but they can also be obtained for financial issues and uh can include signing tax returns, signing up for disability benefits, et cetera. Um This allows someone to retain their legal decision making abilities um but also identify legally, someone else who is also allowed to make those decisions. And then there's conservatorship. Conservatorship is a legal status in which a court determines that an individual lacks the capacity to make their own decisions and appoints one or more people to make those decisions for them. Um A conservator uh can also be a guardian and so be responsible for establishing and monitoring the physical care of the individual and living arrangements or they can just be the the legal decision maker. Um There's general conservatorships where everything is, all the legal decision making rights are uh taken away from the person who's deemed to lack capacity and given to um their conservator. And then there are limited conservatorships where the individuals with ID D retains control over many aspects of personal affairs, education, relationships, housing, and the conservator oversees whatever has been approved as uh being under their umbrella of decision making, for example, health care um or financial decisions. Um conservatorships are often needed to keep someone with a more significant intellectual disability safe and they're not always needed. And I think that that's another message I I want us to reflect on is that it shouldn't be a knee jerk reaction. Oh, you have a developmental disability. Are you conserved? Um They are a big step once they are in place they're difficult to reverse. Um And, and while they may be appropriate uh for some, they're not necessarily appropriate for all and it is important for families to consider all avenues. Um and then decide what fits best for uh for their person. In California. We do have limited conservatorships available while in other states. Uh only general conservatorships are an option. Also, it's important to know that conservatorships cost money uh between court fees and legal fees. Um And uh um and so this, uh obtaining a conservatorship may have additional financial barriers. Um Our social worker through our Down Syndrome Clinic, Rebecca Rice, um who is amazing, um has been trying to collect uh resources for financial support around um the cost of con conservative conservatorship including um some lawyers who may offer sliding scale fees. Um, but still, uh, or, you know, instead of going through a lawyer or a paralegal or someone who helps prepare the documents and then the family is only responsible for the court fees which at times, um, can be decreased or, uh, waived. Um, I haven't fully understood what goes on under the hood of this, um, uh, in terms of the cost and how to, uh, make this easier on families. But, uh, we're actively working on this and updating our website, um, as we discover more. Um, and, you know, I have patients that I see in Down Syndrome Clinic and, uh, they have come to me saying, you know, my, you, you've known me for a year and a half. Um, and we're pursuing conservatorship and I brought this up to my primary care doctor, but my primary care doctor doesn't feel comfortable filling this out. So, can you fill this out? Um, and, you know, certainly I have the luxury of having a little bit more time during a Down Syndrome clinic visit um to get to understand someone's um uh overall capacity. Uh but also truly, the primary care doctor is the one who's gonna know the person best. And so the other thing that I want to encourage all of us to do is take a look at those forms and uh realize that um the questions that are being asked within it uh are things that can be within our scope, especially if we request documents like um tri annual evaluations from IP S and things like that, I often have um uh phone te or telehealth visits where I ask some questions and set up some scenarios um to help um understand what the person's understanding of time and abstract concepts and um complex math and some of the things that um are asked in the forms are um but I don't be scared of those forms. Um And again, I think that once the family has decided that um conservatorship might be right for them. You as the physician is attesting uh to what you understand there to be their capacity. Um But then what might happen before is a discussion overall around? Do you understand that there are many options around legal decision making? And has anybody talked to you about what those options are? So how do we support this process of transition? Um Our pediatricians role I think is one to begin the conversation early. Um as I mentioned at the beginning of this talk and perhaps scheduling interim visits focusing on discussions around transition so that the agenda is stated to be that we're gonna talk about transition. Uh We're going to assess the young adults and caregivers, self management skills and I provided um some worksheets and resources that can help us do that. Uh We can educate families on available supports and resources. And the next slide talks about that, we can connect families with community organizations that can offer support. Slide coming on this, we can support the transition to adult specialists by trying to uh break it down and, and kind of create a schedule and timeline for doing that understanding that there can be some hiccups in the road and in the master plan and then we can ensure that up to date, complete information about the young adult is transferred to the adult provider through a comprehensive note. So who can help? This is so much who can do it with us. Um The I E P is a powerful document by law starting at 16. A part of the I E P is the individualized transition plan uh which should be addressing transition goals. I've seen good I T P s and I've seen I T P S. Um So and, and again, there are uh goal banks available online uh that a parent can look at to uh think about transition goals that might be pertinent to their uh young person and there can be goals added in the context of the IP meeting around health, sexual health and safety, uh independence with uh activities of daily living. It doesn't just have to be the usual understands concepts of money. Um um that I see and can tell a quarter from a nickel that I see in so many. Um IP S the regional center, individualized person plan should also include goals and supports related to transition. Um There are services like independent living services that are literally someone who um supports independent living um uh by supporting uh functional skills and, and uh activities of daily living. And then for someone who ends up going to live independently or semi independently, uh they may qualified for S L S or supported living uh support uh who is someone who works part or full time uh with the person to support their independent living. If the individual is uh covered by CCS and they are in Alameda County where support exists, then a transition specialist, specifically Ariana Waver uh can help with the transition at a website called transition dot org is a fantastic resource. Um And it can assess readiness and has a lot of uh breakdown within it for different aspects of transition. Um We've been working hard to beef up our website to collect resources and it's all under a section called Teens and Young Adults. And then the American Academy of Pediatrics has reports for pediatricians and handouts for caregivers on healthy Children dot org. This is uh um a snippet from uh uh got transition dot org. Um You can have families complete the health care transition quiz uh that assess, assesses readiness for transition. And here's the QR code and then um this is our Charlie's clinic website and I just circled uh that teens and young adults tab. Um And again, this is the QR Code. Um We are blessed to have a very good community organizations that can support uh individuals with complex health care needs and developmental disabilities, including the family resource navigators of Alameda County. That's the top QR code, the care Parent Network of Contra Costa County, that's the middle QR Code and Disability Rights and Education Defense Fund and that's the bottom QR code. And um the uh um they specifically focus on educational rights. Um Alameda County, uh Developmental Disabilities Council uh holds an annual transition fair. It's happening March 25th this year, it's usually held at the College of Alameda. Uh I don't remember if this year it's in person or virtual. I'm pretty sure it's in person. Um And then there's a, a Spanish uh happening called as well that's uh supported by the Regional Center. Um And uh uh these are excellent yearly um uh events with multiple talks that parents can be pointed to so that they can hear from the experts about topics that are specific to them. They can start going any time and there's a lot of talks and so if they attend yearly for a few years, then they can actually get the talk on legal decision making and the talk on supported living and the talk on this and that and, and, and kind of get this information, not just from us as primary care providers, but from, uh, so as I remind myself every day you got this, um and I will uh stop here and uh see if there are any questions. Thank you so much. No, I mean that was awesome. Uh There are a few questions. So the first one you did mention on the who can help slide about regional centers and how and the help that they can offer. Um Do you know specifically about M T US and how they they can help? Yeah. So again, in Ada County, there is a transition specialist. Um her name is Arianna Waver and uh she assists with the transition um of, of specialists. Uh More than anything I do not know of how much of um uh transition support there is within the N T P. Um other than, you know, um the services end at 21. And uh and, and you're right that this is an area of need. Uh I think it's important to establish care with an adult psychiatrist um uh who can then coordinate those services in the older years. U CS F has an amazing service. It's the Office for Developmental Primary Care. Um I last I checked they were closed to new patients, but they do have a healthy website with nice um pamphlets and, and booklets that one on augmentative communication, one on healthy relationships. And uh they can also be a resource in terms of um thoughts around transitioning. Thank you. And we have a comment that this would also be great to hear about as well at the Monterey Conference from Shelly. And there is a question about age. So, you know, the age has been kind of changed to 21 from 18. Um recently, does it make sense to follow our Children with developmental disabilities to even older ages? Is 21 a good age for transition. What are your thoughts on that? Um um I have mixed feelings about it. So at our clinic, we're licensed to care of kids up until the age 21. So the decision is out of my hands and, and in a way that that's a, a bit of um an artificial boundary uh on the outside of this that makes it not up to me and, and makes that that process of transition so important, but also um less uh likely to be uh kicked down the road. Um Some flexibility may be helpful, right? Like um like uh famous philosophers say stuff happens, I I use the P G word stuff happens. Um And so if someone has something difficult going on right around the time that the kid turns 21. It's nice to have a little bit of that flexibility That said you as the person who's known the kid for 21 years will always be the preferred person, but you might not be the best equipped person to take care of an adult body if you don't have uh that kind of training. And so it is really about balancing that I wanna hold you and I wanna be there for you and I wanna make sure that your transition is successful. And also I wanna make sure you're getting the the best care for your young person. And if the best care for your young person should be done through an adult provider, then that's where they need to um uh to get it. Thank you so much and I don't see any other questions. Um But unless anyone types one in the next few seconds, but that was fabulous talk. Thank you so so much. Oh, we did get a comment from Shelley. Sorry if you did cover this, where is the adult primary care provider? So that was, that was my uh my disclaimer slide. I have not solved this issue. I have, we do not have the magical mythical list of uh adult providers that uh love to take care of individuals with complex care needs and have told us please send us our patients. I don't have that. Um I want it and I think that part of it is that working in a community setting to have these conversations and think about how to distribute patients equitably. If someone has an intellectual and developmental disability, they'll likely qualify for Medicaid through S SI which means that it should be a place that accepts Medicaid unless they have private insurance through their employer or commercial insurance through their parents until age 26. Although that might create an additional layer of transition. Um I in general, F Q H CS are well equipped to support individuals with Medicaid insurance and can provide some behavioral health integration. So those are certainly the the practices that uh we tend to uh often referred to. Um and we try to say, hey, call them, get an appointment scheduled. Let me tell me who the person is so I can give him a call so that we can have some of that worm hand off. By the way, here's an amazing note and let's remember, you didn't marry them. You're just testing the waters and seeing if they will be a good fit. You know, like I know I've changed my primary care doctor a couple of times until I found uh one that I feel like I can talk to and trust. Um So I haven't solved it, but I think that if we all come together as a community um and, and continue to create these relationships and we train the next generation to feel passionate about the care of individuals with developmental abilities and feel up to the challenge of taking care of individuals who are a bit more complex. Um That also will be helpful because if we don't feel like we're supported enough or trained enough, why would we take on something that's just more complicated? Right? So part of it goes into the training and the overall support of the health care system. Awesome. Thank you so much. Another comment, great talk. Uh So I hope everyone has a good day. Happy Valentine's day again. Thank you, Naomi for filling in. That was amazing, for sure. 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