Ainsley (00:32)

Welcome back to the Healthcare Transition Matters podcast. My name is Ansley Peacock and I’m the Transition Initiatives Coordinator for New Hampshire Family Voices and the Parent Information Center. I’m here today with two wonderful members of the YEAH Council. The YEAH Council stands for Youth for Education, Advocacy and Healthcare. The members joining me today are Abby and CJ who are both college students.

Today we’re talking about healthcare transition from the youth perspective. So Abby and CJ, if you had a friend who’d never heard of healthcare transition before and who may not be familiar with their chronic complex health conditions or disabilities, how would you explain it to them? CJ, let’s start with you.

CJ Martin (01:05)

It’s like any other type of transition to adulthood, like independent living. If your parents teach you how to do chores on your own and help you look for an apartment, then by the time you actually move out, you’ll be ready to live by yourself. You’ll be able to do your own laundry and cooking. You’ll know how to pay rent and do maintenance.

You’ll also know when to call someone for help, like if you need to call the electrician. Versus if you just get dropped outside and told to find a house the day you turn 18, you’re going to have a way harder time. So it’s the same thing with healthcare transition. If you’re taught how to be independent in your healthcare and medical concerns, step by step as you get older, then by the time you are ready to be relatively independent, you’re going to be capable of it and you won’t just be surprised and dropped out on your own.

Ainsley (02:32)

I love that explanation, CJ. Thank you so much for framing that for us. And it’s just like every other transition that teenagers, young adults go through. How about you, Abby? What is healthcare transition? Like, how does it shown up for you?

Abby (02:48)

For me, it’s taking more responsibility and control over my health and more autonomy. With by having more responsibility, but still having some support, like with a supported decision making agreement, or an SDM, you get to choose the people in your circle of support to be helpers. They can be friends, family support professionals to help make decisions and make life choices but the choice still stays in your control.

Ainsley (03:25)

That’s wonderful Abby. Thank you so much for telling us about supported decision making and I think that it’s a wonderful tool for young adults to be able to use if they still want some support in areas but you’re right the control stays with them. That’s great. What is something that has helped each of you with your own healthcare transition journey like learning different parts of it? CJ?

CJ Martin (03:51)

I did a kind of doctor by doctor process as my plan for learning all of my health stuff. I started with the doctors where I really wanted to be independent, like the OBGYN was the first one I did because I didn’t want my parents there. So I started with learning my health history in that area, how to make appointments for that.

And how to go to the appointments by myself, and then went with all of the different specialists I see, and I’m still working on that. For example, the dentist, I’m not too concerned about doing by myself. My parents are able to help me with that and I’m fine with it. So I’m waiting to figure out all of dental insurance and all of that until I get there, which will be later but I’m still able to do a lot of my medical stuff by myself right now.

Ainsley (04:55)

I love that example, CJ. Thank you so much for showing that spectrum of support and how starting with one doctor that you want to be more independent with and leaving the others for later is possible. How about you, Abby? What’s something that’s helped you on your healthcare transition journey, like learning different parts of it?

Abby (05:16)

I’ve been working med by med and I’ve had great teachers because of New Hampshire Family Voices and my mom’s support people. I’ve learned it in chunks.  I’m putting a medication list together, a doctor team and a community provider team.  I’m putting together a medical summary in my own format, in my own words. It can be overwhelming when you have a complex case. So don’t feel alone if you have a complex case or many diagnoses.

CJ Martin (05:52)

Yeah, it was definitely overwhelming for me too, but it also helps a lot to break it down into manageable pieces.

Ainsley (06:03)

I adore that you both shared that and Abby, thank you for sharing like it went medication by medication for you. Some youth with chronic health conditions or disabilities, it’s like they might have one med. Like let’s say if you’re diabetic and you use insulin, but for more complex cases, you might have 17 medications to take in a day.

So for youth to learn those meds is not necessarily a one -time simple goal. And so I so appreciate you both speaking to, it can feel overwhelming and how to break it down into manageable pieces. That’s awesome. So with the work I do with healthcare transition and supporting like healthcare coordinators who support teens who are going through the healthcare transition process.  Sometimes I hear an example goal of, “A youth will become medically independent.” In other words, be able to do all of the things all by themselves. Do you think that’s realistic? How about you CJ?

CJ Martin (07:07)

No, because no one is completely independent ever. Like, to have food, you can cook by yourself, but you still have to go to the grocery store to get food that other people grew. Or if your car breaks down, then you’re going to have to get an Uber and a tow truck and rely on those other people to help you. In the same way, if you have a health flare up or if you have a big change in your team. You’re going to need more support than you would otherwise. And often the most efficient and just the best way to get things done is to have help and to rely on the people around you. We’re all, you know, interdependent.

Ainsley (07:54)

Interdependence. That’s such a good word, CJ. Thank you for bringing that point up. You’re right. If I need my taxes done, I go to a CPA. If I need my car worked on, I go to a mechanic. None of us do all of the things all by ourselves. Abby, what do you think?

Abby (08:11)

I would love for that to be the case, but it’s not. It can depend day by day, energy levels, fatigue levels, my mood. So I can use my tools to help me be successful.

And it’s all about having a plan to get things done in what situations, whether it be graphics, spreadsheets, or reminders.

CJ Martin (08:36)

Yeah, really what’s important is being able to make the choice to ask for help and being able to take on part of the responsibility or all of the responsibility, depending on what’s possible for you, of knowing who and how to ask for help. So, like, if you have a regular visit, you might be able to do that on your own, but if you have, like, your wisdom teeth out…  you’re going to need support, you’re going to need someone to drive you home. And different people will have different thresholds, but the most important part is that you’re the one making those choices in the end in an independent way.

Ainsley (09:24)

Yeah, thank you so much for that perspective. That’s a far more realistic and achievable goal is having young adults or youth figure out where they need support, what that support is and how to ask for it. Because we all need support depending on the day. I really appreciate that.

For each of you, you are college students and starting to move towards those later stages of transition. What’s next for you on your healthcare transition journey? CJ, let’s start with you.

CJ Martin (10:02)

So for me, I have two things really. Firstly, I want to know enough about my health to be able to make informed decisions. So I want to know about my health history and about how the body works so that if a doctor recommends something that doesn’t fit with my personal health history, I can bring that up and ask them to double check. For example, one time I got prescribed a medication that wasn’t good for people who get migraines, and I do get migraines. And although I didn’t notice it at the time, I think now I would be able to bring it up like, “Hey, I don’t know if you saw, but in my chart, I get migraines. Can we double check if that interacts with this medication at all?”

And the other part is that I want to be able to get through my daily life with the minimal amount of struggle. So that includes not only being able to do my daily tasks, but also having a bit of extra energy to do fun stuff like have hobbies, which is really made possible through accommodations and mobility aids and medication, which are all the things that allow me to live a normal life.

Ainsley (11:26)

That’s such a great answer CJ and I’m so appreciative of you bringing up how those accommodations, mobility aids, and medications, they allow you not only to get through your day but to have energy at the end of the day to then do some fun things on top of those daily need things. And just those are two great goals for you. How about you Abby, what’s next for you?

Abby (11:53)

I created my own login on both of my healthcare portals and I’m having more decision making control, autonomy and choice now and in the future. This is why I’m doing all the work I’m doing with learning my medical history, medications in a way that benefits me and developing tools. And I can relate to CJ with the energy needs shifting and processing, sensory overload and using tools to help balance that.

Ainsley (12:26)

That’s great, Abby. Congratulations on taking on more responsibility in your healthcare with those logins. And I love that you’re balancing that I get autonomy and choice if I’m willing to take on more of that responsibility. And you’ve been working really hard on making those tools and learning your health history in a way that you can then speak it to professionals, medical professionals in a way that makes sense to you. I want to thank both of you so much for giving your time and all of the practice that came to making today possible. As a young woman with a disability, I would have adored hearing this when I was your age. So thank you so much for sharing all of your insights today.

To our listeners, I hope that you’ve enjoyed hearing from these wonderful YEAH Council members and that you will join us next time on the Healthcare Transition Matters podcast series. Have a great day, everyone.