Transition Talks Tuesdays: Health Care Changes Too! Stay a Step Ahead March 23, 2021

Can you go in the chat box right 
now and just type in your name   and if you are a parent, an educator, a community 
member, whatever brings you here today so we can   get to know you a little bit better. And as we 
go along feel free to add any questions you have   to the chat box and we'll also have some 
resources in there as the night goes on too.   Here's a list of some of our upcoming trainings; 
we have the next one is April 13th is on benefits   and we will have a benefit specialist here to 
talk about the different systems, on April 27th   we will have representatives from MATC and UW 
Whitewater and a former De Forest high school   graduate who is currently attending Whitewater and 
his family to talk about how what the differences   are between high school and college and what 
students and families need to be prepared for,   on May 11th we'll talk about guardianship and 
supported decision making, we'll have an attorney   here who's also been through the process with his 
own son, and on May 25th is our wrap-up and we   will have Family Voices here will be presenting 
a presentation on what is after high school and   that's just going to be a time where we, you 
know, wrap everything up and provide everybody   with some additional transition resources.

All of 
our presentations are recorded, like I said, and   all of the resources can be found on the Children 
and Youth with Special Healthcare Needs website. So, for tonight's presentation 
is Hunter and Tim Markle. Tim is a parent, a representative of the 
Wisconsin Youth Health Transition Initiative,   and the director of the Children and Youth with 
Special Healthcare Needs Southern Regional Center,   and he has been a huge part of putting 
these transition nights together so   we're very excited to hear Hunter and 
Tim and their journey with healthcare. All right, well thank you so much Melissa, it is 
awesome to be here. Our plan is to go through sort   of a presentation that we normally have, but we 
want to be able to have time for any questions   or we will do our best to watch the chat, but we 
are just really excited that you are here tonight   and we're excited to talk a little bit about what 
we've learned over the years.

I wasn't born with   any of this knowledge. How about you? You know, 
the only knowledge I was born with was how to cry   and make my parents mad at me for crying. 
We did not get mad at you for crying.   Could have fooled me. Yeah okay, so that 
would be my son Hunter, so let me go ahead   and let's share the screen and see 
if we can get this night going.   If it all works out because technology doesn't 
sometimes, oh hey it's actually working. All   right, so my question to y'all is do you see the 
regular screen or the presenter screen? If someone   could just let me know in the chat because I 
never know what the other people are seeing. That's what I was afraid of, okay hang on. Oh hmm… Now how are we doing? I meant to say it was the 
presentation screen, it looked good. Oh okay. And   Lisa has both because she's special okay, 
so let me I need to switch this back then and, you know what, I’m actually 
going to make this really easy   on everybody and just hide the presenter 
view.

Okay so do you still have a PowerPoint? Yes, thank you very much. All right, well let's 
get going today. So you already know who we are,   do you want to say anything else about yourself? 
Not at this point in time because we should save   that for a bit later. Okay, we'll save that for 
a bit later. I do need to let you know that I am   presenting as part of the Children and Youth with 
Special Healthcare Needs network in Wisconsin,   this includes the Southern Regional Center for 
Children and Youth with Special Healthcare Needs.   There are how many regional centers in Wisconsin? 
Five. Five regional centers in Wisconsin. I   originally thought there were four. No, they're 
seeing the colors. Yes, I know but I thought   Milwaukee was part of the same south central. 
Yeah, I could see that, I could see that. So yep,   so five regional centers throughout Wisconsin. We 
also affiliate with Family Voices of Wisconsin,   fantastic advocacy organization, absolutely 
would love to have you back at the end of May   to be able to listen to their What's After High 
School.

Parent-to-Parent Wisconsin is a parent   matching organization there to support parents on 
the journey. We also have partners dealing with   Wisconsin Medical Home, the Well Badger resource 
center which is a statewide resource, and then ABC   for Health, that is there to help us with health 
benefits, questions, and Medicaid and stuff like   that, and then the other place that I work with 
is the Health Transition Wisconsin. So, Health   Transition is one of two national performance 
measures for Children and Youth with Special   Healthcare Needs in the United States, so we are 
in good following with the other states that are   working on Health Transition as well. So, there is 
our five regional centers, I encourage you to get   to know who your regional center is, you will find 
we'll provide a link to the regional centers at   the end when I send out the presentation, 
we'll get this out to you tomorrow.   So, let's talk Youth Health Transition.

So 
it's known as Youth Health Transition Wisconsin   or the Youth Health Transition Initiative which 
of course makes me think of a…yeti! Even though   he continually uses the abominable snowman 
pmg. But he's cute. He's adorable, yes. So,   also keep track on how many times those appear, 
you will not be getting a prize, but it is fun.   That's true.

So the yeti does appear throughout 
the presentation. Yes. Basically to keep us   interested. Yeah, exactly. Everybody. Okay keep us 
all entertained. So, Health Transition Wisconsin,   the purpose is to ensure that high quality 
developmentally appropriate health care   services are available in an uninterrupted manner 
as the person moves from adolescents to adulthood,   so this is one of those transitions that can sneak 
up on our students and it can sneak up on families   and our parents because there's so much happening 
during transition between trying to decide what do   I want to do after high school, how long do I want 
to stay in high school, where do I want to live,   that sometimes Health Transition gets 
forgotten and it's really important because   some of our youth with special health 
care needs need that continual care,   is they need to see that doctor uninterrupted, or 
some very negative health outcomes could occur,   bad things could happen, and we don't want bad 
things to happen and so we encourage people to   start thinking transition at an early age, we talk 
to providers and schools and youth and families   that really transition can start as young 
as 12 with some of the skills that we'll be   going over today.

And then, in addition to the 
transition, what we have is a transfer of care.   This is when the youth is officially 
done with the pediatrician   or done with the pediatric system of care and 
they are moved into the adult system of care.   Sometimes that means it changes their doctor, 
sometimes it means a change of clinics, sometimes   it means a change of specialist, is each person's 
journey is individual, so there could be a lot   or little but there's always going to be some 
sort of transfer of care into an adult system. So, what do we do? We exist to support 
healthcare providers and organizations to   help them implement transition efforts, we have 
a learning community, we've got a cool website,   we do trainings, we do outreach, we used to travel 
around and do exhibits, but we don't anymore,   now we sit inside our dining room.

Yep 
pretty much, thank you COVID. There you go. And so today we're going to talk about what is 
Health Transition anyway? We're going to talk   about a readiness assessment because it's good to 
know where you are if you want to get somewhere,   if you're going to know where you want 
to go, you got to know where you are,   we're going to show you eight tools of healthcare 
transition, and Hunter's going to talk about how   he's trans- transmitted, transported, 
trans- dead…done…did. Transported.   Transported the healthcare transition, 
the tools, how he's used the tools,   and then hopefully we'll have time to discuss 
ways ideas that you have to help youth transition   healthcare as well and help youth become advocates 
because that's really what we're talking about,   is who is going to be in charge of health care 
decisions and we want the person, the youth, to be   as in charge of health care as is safely possible. 
Yes, advocacy. Yeah, self-advocacy. Good job.   So, let's start talking a little bit. Do you want 
to say hi to yeti? Do you remember that picture,   Hunter? Yep, that was taken up in Door County. 
Okay and where, so we are up in Door County,   on a lake, was that right? No, Neil 
Lake technically.

Okay so near a lake,   that's right, we're out on a pier. Yep. And 
how excited were you to go out onto that rock   and stand that close to the water? Pretty much I 
did not want to get on top of that rock at all,   and yes this yeti is technically a friendly 
one. Yes it's a friendly bumble. Very friendly.   So you didn't want to go out on the rock 
initially, you were a little scared actually.   Oh terrified. To go out on the rock, so of 
course, you know, we're looking at how to get   you out on the rock because I thought it would be 
really cool to stand there and get this picture,   so did I just like push you out on the rock, did I 
pull you out there? No. How did you manage to get   out onto that scary rock? Little by little! 
So do you remember the steps that we took?   Slowly but surely, just one foot in front of 
the other pretty much.

Yeah, so we spent time   walking around the pier. Yep. Getting used to the 
area, looking at the rock, seeing how safe it was,   you know, looking at all the fun drawings, I would 
go out there, somebody else will go out there show   that it's safe, that it's not slippery, and then 
slowly but surely, you made your way out. Yep   and fun fact now that said rock is under the 
water. Very true, is the lake level has risen   and you cannot stand on that rock anymore 
unless you want to get yourself very very wet.   So to get out under that rock, there was a 
process that we took. Yeah. You didn't just   happen to go out there and I didn't just force 
you out there.

No you didn't. And that's the   same thing with Health Transition. Pretty much, 
yeah. It's a process. Yep, it's just one foot in   front of the other. Well, we're going to hear a 
little bit more about your process, your story,   but first let's talk. Lauren, I love it, I wish we 
had a yeti for you because that sounds like fun.   So health care transition is the process of 
changing from a pediatric to an adult model   of care and as I said before, we're not alone in 
this, this happens all across the United States,   it happens across the world, it's something 
that a lot of people are beginning to focus on   because it's really important.

So, 
who needs to think about transition?   Pretty much everyone but mostly kids going into 
their later teenage years into young adults.   Yeah so those teenagers heading into young adults 
and especially those kids with who identify   as having a disability or a health care need, is 
that continuity of care, that constant seeing of   the doctor is really important. Why is health so 
important, what do you think? Well beyond what is   on the amazing slides your friends and co-workers 
put together, possibly I have no idea if you fully   put this together or not. It was a group effort. 
Okay thank you, just wanted to confirm that.   Beyond everything there it is mostly just a way 
to become a self-advocate as well because if you   start self-advocating yourself through health, you 
can start advocating for yourself in education,   working, in everyday life and everything 
and actually being who you want to be   and health care is the first step, 
including everything along with transition.   So how do you think health can, do you have 
any ideas on how health can increase someone's   independence or how not taking care of your 
health could harm independence? Well by not   taking care of your health means you would 
possibly have more trips to the hospital,   get stuck with possibly an in-house 
nurse and everything, or even go to a,   oh I don't remember what they're called 
actually now off the top of my head,   none of your time at home the other…

Assisted 
living? Thank you! You're welcome. That's what I   was thinking of, but if you prioritize health in 
a healthy manner, the possibilities of that will   slightly lessen but it will still always be a 
possibility because we know nothing about the   human body and it's all in its glowiness. It is 
amazing, so health increases our independence,   being unhealthy decreases that independence. 
Oh 100%. And then how about in everyday life,   how does your health help, you how 
does being healthy help you succeed?   Being honest, beyond being able to get up out 
of bed to have fun staying at home watching   television. You have a lot more choices 
when you're healthy, you can do a lot more.   Yeah. Cool, and then opportunity for secondary 
education and working. Yep. So you've been,   you've done the college thing for a little 
while, you've done the working thing   for a little while. Yes, college still 
technically I'm in, but have not registered   for classes. That's okay, you'll get back 
there. But how does your health play into   school and work? Basically for schooling it means 
you can actually do your homework.

Yeah, it helps   you do your homework. How about attending classes? 
100%. And how does it affect your working?   Being able to actually make money to afford 
health care. Yes, if your employer doesn't   provide health care, you have to earn money to 
be able to pay for healthcare and so working you   get paid when you work. Yep. And so the less 
you work, the less you get paid. And the more   bills you stack up! That's right, because that's 
part of life, we'll be talking a little bit about   adulthood in a little while. Yep. So health is 
more than just health care, it's more than just   seeing your doctor. Yep. It's really foundational 
to having a successful life, to having a full   life, as you put it a life of self-advocacy, where 
you can advocate for yourself. Correct. Awesome! It got stuck there for a bit.

All right, pop quiz! 
In general in America, what happens at age 16?   Driving, which I was not able to do because I had 
to do it three times. You are not alone in that,   I don't know if I’ve ever counted up the number 
of times I had to take my driving test. More than   four. Yeah, it was it was a lot so yes, most kids 
look forward to driving at 16, you didn't exactly   drive right at 16 though, you took your time. 
No I took my time. Why'd you take your time,   do you remember? Because I didn't want to 
crash the car. Yes, didn't want to crash   the car and you didn't want to have your 
license until you were comfortable driving,   which I thought was really really smart of you. 
Yep. So, and do you remember during when we were   out doing a lot of practice driving, do you 
remember who had more accidents, you or me?   Yeah I think I had one more accident than 
you did actually practicing driving.

Oh 100%.   Yeah that was a fun icy day. What usually happens 
at age 18? Voting! And is voting important? Yes,   if you want to actually do something good. And 
there are things that are important to people   with disabilities and special health care needs. 
Yep. And we need to vote for people that will help   us to have that best quality of life possible. 
Yep. And then age 21? Drinking responsibly.

I’m   so glad that you remember drinking responsibly, 
that's good, I’m glad you remembered the word   responsibly. Now all these things are really 
important, but they usually lead up to this   whole sense of you become an adult. Yay adulthood. 
Adulthood. So at age 18 you are legally an adult,   you are responsible for your decisions, so you 
can enter into contracts, you can get sued,   you are thought to be the decision maker in your 
life. Yep. Do you make your own decisions 100%   of the time? More like 65% of the time. Do you 
know how many decisions I make 100% of the time?   None. I always need help, thank you, very few 
because I am always asking other people for   input to help me make the right decision. I mean 
we have an entire team to help us with healthcare.   That's true.

So it reminds me that you need more 
help than just them. I need a lot of help. And so   when we are talking about becoming an adult and 
the responsibilities of being an adult and taking   charge of our own health care, taking charge of 
our own lives, it's really important that we try   to stay a step ahead so that we don't get to 18 
and all of a sudden have to figure it all out.   What can we learn before 18 so that 
we can be successful after 18? And so,   we're going to talk about a couple of steps, a 
couple of tools, that you can use at different   ages so that healthcare can start, the transition 
can start at age 12. So let's talk a little bit   about some tools and some resources. Number one 
is a readiness assessment, so really fancy term   but basically readiness assessment is just looking 
at what are some of the things you need to know,   do you need to know them, or is it something 
that you are actually going to use, that you're   actually going to need to know, or is someone 
else always going to make that decision for you?   Which is fine, everybody has their own journey. 
If it is something that you want to learn and that   you need to learn, how are you going to learn 
about it, so where are you going to find those   skills? And so the example on the board is from 
our friends at Got Transition, they have a number   of different transition readiness assessments, 
they have them for a majority of the kids,   they have links to different organizations, 
diagnosis-specific transition assessments,   like there's some special considerations if 
someone has diabetes that they need to take into   account for their healthcare transition, they have 
some for people that might have an intellectual   disability and try to help them understand a 
bit more the extent which they can be in charge   of their health care, but what's really cool, 
Hunter.

Yeah? Is that there's a form for youth   and there's a form for parents or caregivers. Is 
there a form for teachers and principals yet? You   know what, thank you for asking that is they just 
came out with a transition readiness assessment   and ways to use the assessment and put it into 
the individualized education plan. Ah! So you   can find, so you can put healthcare goals right 
into your IEP and be working on them with your   school team. So that is just new on their website 
which I’m really excited about because I want   to see how we can get more health care into 
the into the post-secondary transition plans   and in the individualized education plans. Now if 
they only had one for basic healthcare clinics.   Well, we encourage the healthcare clinics to use 
these as well, to hand them out to their families,   to their youth, to have them go through it so as 
they come back every year, they can start working   on okay at 12 maybe we can start explaining 
about the health care needs, explain what your   diagnosis is, what your health is, understand your 
allergies until finally we work down to, you know,   you know how to use your insurance, you know what 
doctors to see with your insurance, and so again   it's a process that we just build step by step, 
we build up those skills.

One foot in front of   the other! That's what you said in the beginning. 
And I will continue saying it. So the other thing,   so these readiness assessments are available 
at Got Transition, there are other readiness   assessments out there as well but we really like 
these as a tool, we really like them as a tool for   the youth to take, and the parent to take, compare 
so that everybody knows what each other knows,   and then also we encourage the health care 
systems to put it somehow into the medical record   so that it could be continually referenced 
throughout adolescence ,so that again we're   not hitting 18 and all of a sudden going ah it 
changes, what am I going to do, but that we're   prepared for that, that we're a step ahead. Yeah. 
Stop right clicking! I know, I don't know why I do   that.

They also do have some Spanish resources 
and Spanish language assessments as well. So   let's talk a little bit about health care tools, 
why? Because that's why you're here tonight. I’m   saying yes. I mean so far I really enjoy talking 
to you, but basically let's talk healthcare. So   these tools are all on our website, there's also 
a workbook that goes with one of our trainings   called Build Your Bridge, which is designed for 
caregivers and family members of kids with special   healthcare needs that are transitioning, we also 
offer a training called Bridging the Gap, which is   very similar to what we are doing here tonight, 
we offer training for physicians and clinics   so that they understand about the health care 
process, and our newest one is called Dreaming   Differently, and it's designed for parents and 
youth that are part of like complex needs clinics,   so their transition looks different than other 
people so we really wanted to speak to where those   families are at. All right, let's talk tools. Yay. 
Let's talk adult providers. All right.

All right,   so how old are you? 23 going on 24 this December. 
And how long have you seen your current doctor?   Since I was about 15, 16 years old. Do you 
remember that story how that happened? Pretty   much you asked my pediatrician at the time to 
be more one-on-one and he was just simply like,   why? Yeah, I was encouraging him to spend 
a long time with you so that you understood   that he was your doctor and that healthcare was 
about you. Do you remember how it used to be back   when we would go see the pediatrician together and 
he would look at you and ask you a question, what   would you do? I would look at you. Yeah exactly, 
like I had, like the how do you feel when you're   looking at me, I have no idea how you feel Hunter 
you're gonna have to figure out how you feel.   And so I really wanted him to build that 
relationship and he didn't really get that,   and you didn't really get that, which is fine, but 
I was really rather disappointed, whereas at the   time, and still, I loved my healthcare provider, 
I liked my doctor, so I introduced you to him   and how's that going? Ah pretty much we 
go together like peanut butter and jelly.   You like your health care team? I really like 
them a lot! wWhat is it about them that you like?   The fact that the nurses always have a smile, 
always laugh, and have fun doing their jobs.   When they need to be serious, they get serious, 
but if it's just anything that's simple,   they just give it to you in plain English, 
there's none of the medical long mumbo jumbo   terms that you hear on Grey's Anatomy and other 
shows like that.

Do they take time to listen   to you? Oh 100%, they have open ears. Okay, so 
you're really, it's good. Yeah. And I’m very happy   that you're assessed. Do you know other ways that 
people might be able to find adult providers?   Through MyChart? You could use 
MyChart, you could contact the   clinic that you go to and ask for their advice, 
see if there's anyone who is taking new patients,   you can ask other parents. Oh yeah I forgot about 
the other parents.

Especially with parents that   have children with special needs because sometimes 
they know a doctor who does a little bit better   and you can always talk to your doctor and 
say okay this may not be something you do,   you don't see a lot of kids with special health 
care needs, but are you willing to learn with us,   are you willing to talk to his pediatrician, to 
learn what you need to learn to manage his care   as a primary care provider. Are you ready to go 
down even longer bumpy road along with us? We have   a map! Well that's the problem is we don't have a 
map, but yeah but getting someone who is willing   to go along on the journey with you and having 
that team, that healthcare team, around you.   Yeah. Now you don't have any specialists.

Well, 
would my eye doctor count as a specialist? Yes   you're right, you do. I technically 
do have a single specialist, it's just   more along the general lines of an eye doctor 
and everything. As a matter of fact that is that   is really interesting though Hunter, I haven't 
thought about that. Your ophthalmologist is really   a pediatric ophthalmologist. Yep. Okay so when 
you're there, it's usually kiddos in the waiting   room and there's a Disney movie playing, well 
there used to be. But, her specialty was with   eyes that aren't lined up. Yep. And so she even 
though she was a pediatric ophthalmologist,   she sees adult patients just in this really narrow 
realm. Which I am a part of that narrow realm. So it's not as cut and dry as the pediatric 
specialist may still have a specialty in   adult care. Right. Nothing in life is cut and 
dry.

That's true, but you need to figure that   out beforehand. Yep. Decision making, we already 
talked a little bit about decision making. Yep.   Well let me ask first, is there anything else 
you want to say about your adult providers. Do   you want to do the dietitian story this early or 
do you want to save that for a little later? Let's   save that one. I'll save that one for appointment 
making. Sounds good. So decision making.   I am not that great of decision maker, but 
I still do okay when it comes to my health.   And how do you make decisions concerning your 
health? Do you just like, you know whatever.   No, I use MyChart. And how do you use MyChart? 
Well in contacting my health care team   through making sure I get to my appointments, that 
I scheduled them properly, pay my bills properly   for said appointments or other health care needs. 
And so that's not how that started though.

No,   it started off with you making all the calls 
at first, then me sitting in and listening in,   and then answering very specific questions, then 
me answering most of the questions until I was   able to do my own calls, and then we discovered 
MyChart. Yes I am going to quote MyChart until   the end of the earth's days. You weren't 
really a big fan of phone calls. Still aren't!   So MyChart enabled you to not have 
to have that stress and anxiety   of talking to a person, but you could still make 
your appointments and keep track of all your tests   and everything. Yep. That's pretty cool. Yep. I 
also discovered Google maps. Why is Google maps   so important to you? Because that way I can get to 
my appointments on time and it helps making sure   that I don't get lost in Madison. So I’m hearing 
you might need a little bit with anxiety as well?   It also helps with knowing anxiety, yeah.

So 
this goes a little bit to about me, but this   would be a nice time I think to, because we've 
talked a little bit about knowing who you are,   knowing your healthcare, do you want to just sort 
of explain a little bit who you are and what your,   you know, what your if you have a diagnosis, 
if you have different health needs, you know,   what about you concerning health? Well originally, 
I had a lot of problems with speech, so we set up   time with speech therapists and everything. We 
went to three different doctors originally before   age 20 when I was diagnosed with autism. I 
also have a severe, well not I don't know   if it's severe or mild anxiety, it's just 
generalized anxiety? Well, It depends on the   day and the situation. It depends on the day and 
situation. I am also diagnosed with depression   and everything, and I actually checked myself 
into a psychiatric hospital wing of…It   doesn't matter where. Yep, nope, I just know 
it was a hospital on the east side of Madison   and got help with them and everything and 
good therapy sessions and just did well   with said therapy enough to the point where 
I actually have not seen them in a while,   but I’ve been doing well the whole 
darker side of depression hasn't busted   its ugly head up in these days of COVID.

Fingers 
crossed it does not. So what have you been doing   to stay healthy, how have you taken charge of 
your health care to be healthy? Mostly just   try to eat more in generalized food groups 
and everything, mostly just simple snacks,   more snacks, eat snacks more often, 
have healthier lunches and dinners   more often, and try and get out more, but again 
COVID, thank you very much for that. But you have   found some online groups that have been really 
helpful. Yeah, I found a few friends online   through a local gaming store and everything. Thank 
you Discord and Roll 20 for Dungeons and Dragons. But overall just trying my best to get through 
these hard times. And we're not going to go into   the anxiety and depression, 
but do you feel if a doctor   asked you what it was like when you felt anxious 
or depressed, would you be able to tell them?   Yeah.

You could explain it to them? Yeah. Okay 
because it's important to be able to explain   so they know when to help you. Yep. Like I know 
you've had discussions with your doctor about   medication or not medication, and you guys come to 
that decision together, whether it be helpful or   not, but it's important for you to know what your 
body is doing, how it's feeling, you've explained   to me sometimes when you get anxious and one of 
the main things we use is breathing. Yep. Because   you can feel that shortness of breath, so that is 
really good to understand your body, what healthy   feels like, what unhealthy feels like, and then 
what you can do. Yep. So you obviously know who   to go to go see if you want to see your doctor, 
but what do you do if you suddenly have a health   care need that's outside of the business hours, 
like on a Saturday? Well that would be the on-call   nurse that would be on the back side of the 
health insurance card that I still do not have!   You know, I ordered you a health insurance card 
and I don't know where it is, so I will follow up,   I will get you a new health insurance card, but 
don't yell at me about it because I’m not the   one who lost the first one.

I know, I still don't 
know how I lost it. I don't either, but we'll get   you a card, so the back of that health insurance 
card includes your nurse on call. Yep. What else   do you know is on that health insurance card? Well 
the health insurance company that you go through.   That is really important to know because a 
lot of places you need to go see their doctors   to be able to get it paid for by your health 
insurance and so knowing your health insurance   provider is really important. Yep, my sister 
was not lucky in that regard wasn't she.   She decided to do what was called out of network 
and that resulted in a rather large bill.   Yep. Because she saw an out-of-network doctor. 
Always try to be in network when you can,   and if you can't afford it do out of network if 
it's a serious injury or something. Yeah you still   got to take care of your health right? Oh 100%, 
health should be one of your giant priorities. So   anything about emergency contacts? Have them 
in your phone and carry your phone with you,   I am not someone who carries my phone around that 
often so I do not have my emergency contacts on   me 24/7.

But most people do have their phones 
with them and so having the emergency contacts   in the phone, so that if you would be in 
an accident and you wouldn't be responsive,   that you'd still be able to get the help because 
they would know who your insurance carrier is and   know who to call. Yep. Cool. Talked 
a little bit about appointments. Yep.   But I just want to remind people, so at the 
beginning, is you didn't even want to make a phone   call to make an appointment. Correct! And I know 
there were years where, you know, even after 18,   where we would go to your appointments together it 
wasn't necessarily I was not in the room the whole   time, but we would go together I would support 
you in that.

Yep. Again it's been this process.   Yep. So, do you want to talk about one of the big 
surprises that came about in this process? Ahhh,   the dietitian appointment story. Yes. I 
love this story because it was my first   time actually scheduling and going to my own 
appointment without my parents knowing at all.   True, we're sitting around one day and Hunter puts 
his coat on. Yep and my shoes, grabbed the car   keys and my wallet. I said where are you going 
because we generally know where each other is   most of the time, where are you going? 
And he's like…to see my dietitian!   And I of course said you don't have a dietician, 
Hunter. I do now. So, how did you get a dietitian?   By talking to my primary health care doctor about 
how can I gain weight healthy without becoming   well…thank you for that, thank you so very 
much. Continue. And he just sent a referral   to a dietitian that he knew and just went from 
there.

Cool, and you still have that contact so   if you wanted to go back, you could see that 
dietitian again. Yep, I still got the contact   information for said dietitian and everything 
and I still am eating as healthy as possible.   And you can always go back to the notes that 
she gave you. Yep. To get more ideas about   how to eat healthy. Yep. Cool, and you 
don't take too many medications do you?   No mostly just a combination of multivitamins; 
vitamin C, vitamin B, and vitamin D.   And did you start off able to just like take them 
every day when you're supposed to take them? No! What I’m supposed to take something? How did 
you, so you didn't start at this end point,   how did you get to where you're taking 
vitamins every single day, at the right times?   Well through the help of a pill organizer and my 
lovely mother who is currently sitting in the room   over there. No, no, no need to pull her into the 
conversation. Oh 100%, not going to.

But she is   the one who set up the pill organizer for you. 
Yep. And we filled it for a while yeah before I   started refilling it and now I’m just taking them 
every day. So you start off with your mom having   to put the pills into the pill organizer and when 
they ran out she would have to refill it. Yep. And   now you don't even use a pill organizer? Correct, 
I just take them straight out of the bottle.   But you're doing it regularly? Yep. So 
that's again that process, that growth.   Yep. Good job! Yep. One of the other things we 
like to talk about, we've kind of talked about   this whole time, is putting together this 
health summary. Yep. Understanding what   is my health history, what is my health journey 
been, so that I can then explain it to the next   doctor or to the next specialist, so that I can 
understand and explain it and it also includes   things about don't ever try to put a needle in 
my left arm, only give me needles in the right,   or please ask before you touch me because 
I’m really sensitive to touch.

So what   our preferences are what it is about us that 
makes us different is that's really important   for health care teams to know moving 
forward. Yep, 100%. All right, so to sum up,   health care matters in a variety of settings, is 
in the actual management of healthcare and the   clinics you go to, it matters in employment and 
letting your employers know what accommodations   you might need, accommodations are just things 
that can be changed that you can have the ability   to do your job. Oh that's stupid industrial 
dishwasher. Yes, so you actually had to have a   talk with your employer because you had some lung 
issues there for a bit. Yep, had to start bringing   in an inhaler, then my supervisor was pretty much 
like I could switch you over to housekeeping?   And so that was kind of an accommodation, they 
didn't just fire you because you couldn't do the   dishwasher anymore, they found a different job 
that you could do.

Yep, and then I spent about   another two years as a housekeeper. Yeah. Before 
going off to college. And you had to tell them   about what was going on with your health and you 
had to talk to them about that. Yep. Independent   living is you're still in the house but you're 
living, you know, kind of like independently. Yeah   semi-independent, I still eat their food 
and use their electricity and bathroom.   But it's your health that lets you do that. 
Yep, so that's awesome. Your health matters in   high school and post-secondary settings. When 
you were going in person to Madison college,   do you remember the kind of stuff that 
was available to you as a student?   Yeah they had an entire department for the yeah 
the Disability Resource Center and everything,   they also had specific rooms in the library, an 
entire section of their school for the testing   center, there we go that's what it was titled, 
for those who needed a more secluded area for   test taking, they also had a lot of good groups 
that you can join and everything to make friends,   and just overall MATC was a very and 
still is, an open, welcoming school.   Cool, and you also found out that you could if you 
wanted to.

Oh and counseling services. Yes, they   have counseling services as well and some minor 
medical stuff is available there, so you need to   learn how, if you decide to go away to college, 
how can that help you maintain your health? What   is it that they have available? What is a healthy 
environment within this college for you. Exactly. And if they do not have this, is this 
the right college for you? Good question. So the rest of the PowerPoints, which I will send 
out tomorrow to everybody who is here tonight,   includes some links to how to put health into the 
post-secondary transition plan. If you want to   know more about post-secondary transition plan, 
go to the conversations on the Transition Talk   Tuesday’s website and you can listen to the first 
night we talked about post-secondary transition   plans as well as then the PTP as well as the app 
that's there. Talked a lot about self-advocacy,   I love the line that self-advocacy means you 
get to choose when to pick your battles. Yep.   Is not everything is a crisis in life. No, we're 
just going through a giant world crisis.

We are   going through a giant world crisis at this point, 
but you should be able to pick the things that are   important to you if someone else shouldn't be the 
one to say, no you should really care about this.   Self-advocacy means you get to care about what 
you want to care about, what matters to you. So   we have some resources on self-advocacy, just want 
to reference a brief timeline of transition. And   also once you didn't really tote ADRC. Well, you 
know, why don't I talk a little bit about that   right now. But really just a little bit because, 
you're right, there are some people so like you   have what's called private insurance. Yep. So 
right now you're on my insurance and right now   the law says that you get to stay on my insurance 
until 26, okay, so you've got a few more years. Now, there are also   insurance companies that will 
make exceptions to that rule   for special healthcare needs, and so I’ve been 
in contact with the insurance company and now   I know the process that if I believe it would be 
best for you to stay on my insurance past age 26,   then I can talk to them about that possibility. 
Okay.

Now there's also some youth that receive   public benefits, so Medicaid, Badger Care, 
they have Badger Care through Katie Beckett,   they have a children's long-term support waiver, 
all these things can be used to help their health,   to keep them healthy. Interesting. Well that 
stops because it's a children's system at a time,   but there are benefits available in the adult 
system, so to access those benefits you're going   to want to go through the Aging and Disability 
Resource Center.

Okay. Now they do more than just   benefits. Oh 100%. They also help out in trying 
to figure out, you know, how you can be helped in   what resources are available in the community, 
another great resource is the independent living   centers are also fantastic resources, but if 
people have public benefits and they want to   continue those benefits, they want to continue on 
Medicaid, continue on Badger Care, continue our   children's long-term support, there's steps they 
have to take and applications they have to take.   The Aging and Disability Resource Center are 
the gatekeepers for all those applications,   and so starting at around age 17 and a half, you 
can go and say okay this is this is what I want   to try to transition over and they are the experts 
and they'll help you with that.

Excellent, so they   do not pull a Gandalf and not let you pass. No, 
they don't. They are the ones that help you pass.   Yes, very much so. Interesting. They help you 
find the benefits that are going to help you   succeed in adulthood. Now one of the things 
that comes up when we talk decision making,   is this whole idea of guardianship, is who is 
going to be in charge of your medical decisions   after 18, because automatically at 18 it's you. 
Yep. Now there's some kiddos who they're not   ready yet to take care of themselves. Or can't 
metaphorically speak medically either. Right,   that have maybe a different way of communicating 
and so there may be times, even if they have a   different way to communicate it doesn't mean they 
can't make their own decisions, they definitely   should be making their own decisions.

Right. But 
there's sometimes when it's safer to have other   people making those decisions. Like mother or 
father, aunt or uncle, you have grandparents. So   the most restrictive form of that is guardianship, 
where basically you lose some of your rights,   but there's other ways, there's powers of 
attorney for health care, there's supported   decision making, which we'll talk about in a 
couple of weeks, so there's other ways to help   safely make those decisions. Yeah. But again, 
it's something that. Possibly because we're only   a human and we will always make bad choices. 
Do I let you make bad choices sometimes?Do   you want me to get out the list? I will gladly 
make a list.

But do you learn from them,   are there things that you have learned from making 
bad decisions that you would not have learned if I   never let you make any decisions at all? Yep. Yep, 
there sure are, is we've learned that you need to   make mistakes, that's one of the ways one of the 
ways we learn and we grow. Yep. But we have to   do it safely. Yeah. Stop right clicking! I know, 
I right clicked again. I also want to include a   recommended health care transition timeline that 
we talked about a little bit earlier, is it starts   with just being aware of the policy of where that 
transition is taking place, start to plan at about   14, start to look at who is the doctor, who are 
the team of doctors and specialists that are going   to take care, take care after 18 that's when you 
start to go through the health care checklist,   and this is all in conjunction hopefully with what 
would be called a medical home, with a doctor's   office that is there to try to help you in this 
transition that understands what your needs are,   your unique needs as a person with disability 
or family with the child with disabilities,   until eventually the youth adolescent grows into 
a young adult and they're fully integrated into   adult care.

One area that some people forget 
is that especially people that unfortunately   spend time in hospitals, is they get used to 
going to the children's hospital and you need   to figure out what are the rules when is your 
child no longer going to be able to be admitted   to the children's hospital, but have to 
be admitted into the adult hospital due   to the hospital's rules and so that's something 
because you don't want to just all of a sudden   have someone say no you can't go there anymore, 
you have to go here and you've never been there   before, that could be get really scary. Yep. 
Final recommendations from parents, make a plan,   record everything, break things down into smaller 
tasks, we've talked about that. Yep, organization,   I am not good at organization. I'm not the 
best either. You're more organized than me.   We managed to do it together. Ask questions 
of other people, get to know other parents,   and most of all be kind and gentle with yourself. 
Yep. You're not going to get it right the first   time and it's okay.

Nope. Just keep moving 
forward. Yep. So, after tonight hopefully   you can with your youth, with your student, with 
your son, with your daughter, with yourself,   go find a readiness assessment and see about 
the things that need to happen before age 18,   start those conversations, check out 
our website, talk to the IEP team,   incorporate health healthcare into transition 
planning, talk to your primary care doctor about,   you know, who's gonna provide my care after 
18, locate your ADRC, so any one of those   is a fantastic action step. Yep. But most of all, 
take a deep breath and stay a step ahead. Yep.   So also included in the slideshow that I’ll get 
to you is just a bunch of different resources,   so don't worry about writing these 
down we will get these to you, and then if you have any questions you are 
always free to reach out to me and if you   have questions for Hunter you can reach 
out to me and I can get them to them.   Yeah.

But we do have time tonight, so I’m going 
to stop sharing and see if there are any questions   in the chat or if you wanted to unmute, 
we are a small enough group tonight   that if you wanted to mute we'll be able 
to see that you are muted and you can feel   free to ask me any questions or ask Hunter any 
questions. And don't forget to count the yetis!   Yeah if anybody has any idea how many 
yetis there are, that'd be fantastic. I have a question Tim and Hunter, so do 
you have an example of a health summary   or is there on any of that? That is a fantastic 
point Melissa, if you make a note I will send   out a link to a couple different ones. Okay. 
They're sometimes called an "about me" sheet,   the more involved one is called a 
shared plan of care and that is used by   physicians, it can be used not just in complex 
care, but that's generally where it started   and it includes the main health issues 
along with the likes and the dislikes   that then goes into the transfer, but 
yes we can provide examples of those.

Other questions, comments? As you try and find your mouse. I know, I 
have lost my mouse, my mouse has run away.   Oh there it is! We'll just 
keep it over here. Yeah.   Lost my chat box too. Yes you 
did. There's the chat box. Okay. All right, any questions? Kris! Yeah, I know 
that most healthcare providers because of HIPAA   won't share information about a patient once 
they're beyond the age of 18, because they're   technically an adult, do you recommend maybe 
putting into place something like, you know,   having like a release of authorization on file 
so that a parent can get information to help   guide their child? 100% correct, I am so sorry I 
missed that Kris.

Yeah, we actually do have one   currently set up for myself to have informational 
release to both my parents and everything, and no   we do not have any pets but we do live in a 
neighborhood that is fairly dog friendly, we   have at least eight, nine dogs in our neighborhood 
in total? Sure sounds like it sometimes. Maybe 10   if I count the ones living up on Monroe and 
everything as well because they likely walk   their dogs down this way and everything. True, you 
have a lot of dogs around you. We also have a few   random cats, I wouldn't call them feral, I’ll just 
call them neighbor cats, they just walk around,   they just appear out of nowhere.

So yes, 
release of information when they when   somebody turns 18, that not only that not only 
helps in communication, well it one of the ways   helps is just there's some places that 
won't even let you make an appointment   if you don't have that release of information, 
and when our kids go away to college   they're usually still relying on us to make their 
appointments, sometimes, and so that release of   information is really important just to give 
you the simple access to make those appointments   with the doctor's office. Yeah and thank you 
Jen for your amazing comment. You're pretty   good at reading the chat box.

Well, seeing how 
you care more about interacting with people,   I care more about making sure we have proper 
interaction. There you go, any other questions? I have my cat with me, see! Yeah.   What's your cat's name, Lauren? 
This is Wishy, he's a tuxedo kitty. Adorable. Thanks it is adorable, but nice   and cute. Cool thanks for being 
here, Lauren. Yeah. You're welcome! All right, if there's no final questions 
we will let you know that this will   this has been recorded, we'll have it posted   tomorrow or the next day, depends on what 
tomorrow brings, we'll have the list of   resources together and get those sent out to 
you and we'll work on posting it to the website.   I just had to stop guaranteeing that I’d have it 
up the next day because I could never be sure what   the next day would bring.

So any final things, 
any other final questions, thoughts, comments? All right, Melissa you want to take us on home? Oh, I don't know, do we have any closing slides, 
we don't need to. Oh no this is me! Oh my gosh,   I am sorry this is my fault. I am supposed 
to put in the link to…Oh the…Yeah and I   had it pulled it up and I was I was all over this 
earlier and then I got distracted by my talking. So, Tim is going to put a link in for a 
survey. If everybody can fill that in helps us. Make sure it's set to everything, Dad before you 
hit enter. Sorry, I almost sent it just to Kris.   Yep. All right, so there you go. We really do 
appreciate any feedback that you can give us   as we figure out how we can make this better or 
do this again next year, in a couple of years,   because it's been a lot of fun so far, so 
thank you all for being here tonight. We really   appreciate it. Hopefully you learned something new 
and take one of those action steps and you'll be   staying a step ahead.

Thanks a lot. As many 
steps ahead as possible. Thanks everybody. Bye! Nice to see you! Nice to see you guys. I love doing these things..

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