Emily Woodward PIC (00:37)

Today we’ll be discussing the transition from pediatric to adult health care through the lived experience of young adults navigating complex systems of care. The transition to adult health care brings significant emotional and structural challenges, including difficulty finding appropriate specialists, navigating complex insurance systems, and the transfer of health management from caregiver to youth.

Support from trusted providers, family, and community services plays a critical role in building confidence and helping young adults manage these barriers. Overall, the healthcare transition is an ongoing process shaped by gaps in coordination, highlighting the need for more integrated and patient-centered care that prioritizes youth and young adult voices. Today, we’ll be talking to two young adults, Keagan Watson and Justin Bonny, who will share their experiences that reveal both the challenges and the personal growth that come with navigating complex systems of care. Today, we’re going to begin with Keagan Watson. Keagan, welcome.

Keagan Watson (01:46)

Thank you for having me, Emily.

Emily Woodward PIC (01:46)

Thank you so much for being here. Can you describe what it was like for you to transition from the pediatric healthcare model to adult healthcare?

Keagan Watson (02:00)

Sure, it was a little bit chaotic. So at about 19, things just started falling apart. I don’t know if that was a funding issue or whatnot, but the first thing to go was the orthopedic. And then…because of a few of his choice words. It really kind of made me feel nervous to seek out specialists in my adult healthcare.

And then I kept on with two of the pediatric specialists until I was 21 and then the physiatrist that was on staff at the same appointment as the orthopedic who had a few choice words for me. He said I would take you on as an adult because I work with all ages because that’s how I supplement my income. But he said that I would recommend physical therapy for you and so there really was no need unless I could find physical therapy to help. And so, with that attitude in mind, I now currently don’t have very few specialists, and I find that the system, the system seems to be a little more fragmented. I don’t know if that’s the same across the board.

But it’s like you have a GI specialist who only knows about GI stuff, but she seems not to know about how the GI affects the entire body. And it’s trying to get care for my condition. I have cerebral palsy is quite the challenge because you don’t know who to go to or what’s appropriate and at least in my case I don’t want to feel like I’m wasting somebody’s time because there are other patients who require care who I don’t want to stand in their way if I’m not worthy of care.

Emily Woodward PIC (04:39)

Thank you for mentioning the fragmentation aspect. How would you compare your experience with specialists in pediatric care compared to the adult care?

Keagan Watson (04:54)

While those appointments every six months were very, long, it was nice to, instead of going to specialist after specialist to have them all meet there. They were kind of talking at a higher level most of them than I could understand at the time and so some of their observations didn’t really make sense to me because I live my life and I see things on like a day to day I don’t I’m sure I follow some sort of book pattern but we don’t live our lives in medical terms and in a vacuum so at least as an adult now you kind of understand it but like I said there’s this fragmentation of care where it’s like nobody communicates with everybody and everybody is really intelligent but can’t put it all together and you know, I think I have a good PCP now but I’ve also had primary care providers who are responsible for kind of overseeing the whole thing I have had some PCPs go up tell me why do I even have to see you because you require specialist care. And the answer for those who are wondering if you need a PCP to oversee everything in fill out paperwork for you to access some of the specialized care.

Emily Woodward PIC (06:43)

Thank you. I know when you were planning for this episode, we talked a little bit with yourself and the person who was helping prepare the episode. You mentioned several people in our organizations that were supporting you through this process who played the biggest role in helping you kind of navigate this transition.

Keagan Watson (07:03)

Family, a little bit of, a little bit of like, Waypoint and special medical services, which now doesn’t exist. It’s rolled into Waypoint, but you know, family and friends and some of why I’ve sought out some of the specials I have on my own is from hearing some experiences from those with similar conditions to how successful they’ve been.

Emily Woodward PIC (07:53)

How prepared did you feel when you had to transition over from pediatrics to adult health care?

Keagan Watson (08:05)

I would.  I probably give it a 5 out of 10 because I had a pathway I was told to follow but with the issues I had, the barriers and such, you really don’t know how to put it together.

Emily Woodward PIC (08:40)

Right. And like you mentioned, the fragmentation of kind of going to one person for one certain issue, but how it’s, it’s all related in your body, but for the specialists, they’re only specialized in that specific area.

Keagan Watson (08:54)

Yes.

Emily Woodward PIC (08:56)

So it can be a lot to adjust and transition over to. What do you wish someone had explained to you earlier about kind of the insurance or healthcare systems before you were transitioning over to adult?

Keagan Watson (09:10)

So, I forgot to mention this. When I turned 18, and graduated high school, I ended up getting Medicare. And I wish somebody had explained to me better that that became the primary insurer because they play by different rules than like Medicaid and when Medicaid becomes, well, maybe not necessarily different rules, but.

When they become primary insurer, it kind of messes things up. And I remember talking to my equipment provider and it was a whole set of different paperwork that delayed me in getting one of my motorized chairs. Because I thought I was still on New Hampshire Healthy Families as primary, but they became secondary and Medicare became primary.

I did get a letter, but it was more like the pink Cadillac letter, meaning, you know, here’s all the things we can do for you. It wasn’t, they didn’t specify specifically that we are the primary now. And that would have been a little more helpful to know, or at least how that affects me.

Emily Woodward PIC (10:53)

Do you have any other specific resources that were helpful for you that you think other youth members might benefit from having?

Keagan Watson (11:03)

New Hampshire Family Voices, they were a very good resource. I have, you have community and they have access to a wide range of resources that they can navigate you to both on the website and from conversations you have with some of the staff there.

Emily Woodward PIC (11:30)

Is there any last things you would wanted to add about the transition over from pediatric to adult? Anything we can offer youth for support or things to be aware of?

Keagan Watson (11:43)

I don’t want to use the word scary because it’s not… I wouldn’t term it as scary. It’s a lot, but you can do it. It’s… I really want to end on a point of optimism because, you know, you can do it. It just might be a little rough and…  try to ask questions sooner rather than later.

Emily Woodward PIC (12:19)

Very good advice. Thank you Keagan for sharing all this great information with us today. I appreciate having you on the podcast.

Keagan Watson (12:27)

Thank you for your time.

Emily Woodward PIC (12:34)

Hi Justin, thanks for being here today. Can you describe what it was like for you to transition from the pediatric health care model to the adult health care model?

Bonny, Justin (12:37)

Of course, thank you for having me.

Yeah, definitely. So it was quite a difference. I noticed when I first transitioned, my insurance provider had assigned PCP to me, just by default. And we couldn’t really get in touch with them, so we ended up trying to find a different PCP that was more, you know, suited to my surroundings as someone with a chronic condition. And we didn’t find one, but it took quite a while to get an initial appointment with them. think it was almost a year before I saw them in person for the first time.

Um, so in terms of, you know, finding a PCP, was definitely a tough one. Um, it would have been nice to, to, um, you know, just be able to stay out with the same person cause they know me for, they know me for so long, but, um, yeah, so in that sense, it was, uh, a little bit difficult. And then I think, you know, for the most part, was, uh, specialists.

Um, yeah, obviously stayed the same. Um, that wasn’t too bad. Um, it was definitely a bit getting used to with, you know, having the, you know, all of sudden I’m the one that has to schedule my appointments and keep track of everything. So was definitely a learning curve in that sense. But yeah, so that’s, you know, that’s sort of how the transition was for me at least. Um, I know it is with Mass General. Um I think you can stay on with your  specialists um as long as you know they don’t retire. I think I don’t think there’s a limit. Now I know that uh parents of my friends uh who are very different um providers they have you know there’s cutoffs with those specialties and you have to um in a certain age of the transition.

To an adult specialist. That’s how the transition’s been for me. I feel like now I’m just finally starting to get the hang of it now.

Emily Woodward PIC (15:36)

That’s great. Are there any particular challenges that kind of stood out for you as you’ve been navigating this transition?

Bonny, Justin (15:43)

Um, think, um, well, like I said, you’re trying to, trying to find, um, uh, um, PCP specialists in the first place was, was challenging. Um, in my case, having a PCP, um, that, you know, kind of was, was used to dealing with people with chronic conditions. Um.

That was the big challenge for me, I think.

I just had to like, know, having to suddenly handle all of my care and deal with insurance and all the stuff that comes with that. In addition to that, know, I have like a lot of people, a lot of us, we all have jobs and other commitments that we have, you we can’t just do it all at a time.

I mean, insurance and handling all that. I’m lucky enough that I have a great case manager who is able to handle all that for me now, but that wasn’t the case in the beginning. My parents are mid-term student, I was the that had to, if I had insurance companies, had to you know, all the stuff that my parents used to do, I had to start taking over and start doing in addition to my other regular responsibilities with my job and my university and all that. So, yeah.

Emily Woodward PIC (17:32)

How prepared do you think you were for this transition to adult healthcare?

Bonny, Justin (17:38)

Yeah, it was definitely challenging, even with all the help I had, know, transitioning to handling that stuff myself. Yeah, was definitely a challenge.

Emily Woodward PIC (18:05)

That’s a really good point that you made that you have work and different things and it’s just, it’s a lot of different things that you have to navigate. And I think you mentioned too that it was a big transition for you from having the help from your parents and now doing these things, navigating the appointments on your own. Is there anything else you want the youth to know about navigating these changes from the pediatric to adult model of care?

Bonny, Justin (18:32)

Yeah, I would say that, you know, um, it may seem overwhelming at first. Um, but you know, most important thing is to find a good case manager. Um, because they, you know, mine, it was a great, great help to me and I able to, I could email them and say, Hey, this is, this is what’s going on, I don’t have time to deal with this to you, you know, talk to the proper people, the insurance companies and mine has been great at sort of handling that stuff and helping me get the things that I need. So I think honestly the number one thing is, you know, find a good case manager. They’re definitely out there, definitely.

I will also say that I have the choices for independence waiver, the CFI waiver. That’s been, I would say for anyone that qualifies, definitely get that because it’s a big, it’s been a big help in addition to the services I already get through Medicaid, through a great resource. I learned a lot from my case managers over there, um, over the years. so, but yeah, the main thing is, know, like I said, it seem overwhelming at first when you have to suddenly take all this on. Um, but once you sort of, you know, figure out, you know, once you sort of figure out how to navigate the system, it’s, it gets easier. Um, and plus, know, like I said.

My parents still help me, you know, to this day, with figuring all this stuff out in addition to my case of manager. It’s definitely manageable once you get the hang of it.

Emily Woodward PIC (20:49)

Thanks, Justin. Is there anything, any final thoughts that you wanted to add? I know you covered a lot of things about the transition from pediatric to adult and all the different components kind of of what youth need to know.

Bonny, Justin (21:04)

Yeah, I would just say, the most important thing is really make sure you have a similar support system. Especially here in the United States, it’s difficult thing to try and navigate this healthcare system of ours. And there’s tons of things that I would never know about and not utilize my support system. you know, would say, the MEAD program, is the New Hampshire’s Medicaid buy-in program. It’s one thing I was worried about when…

I, you know, I’m still in university now, but once I graduate, you know, my number one thought was, well, what’s going to happen when I start working more hours in the full-time job and I lose my benefits because I’m making too much. And so that was my number one concern. And because I know that, you know, private health insurance doesn’t typically cover PCA and private duty nursing.

So it was a big relief to hear that there are things out there like the MEAD program. Every state has some sort of program where you can buy into Medicaid with a premium. And so just things like that, haven’t ever known that had that solid support system. So that’s my number one piece of advice is if you don’t already have that, find.

Find people who know that stuff and who can help you navigate because it’s difficult to try and do it by yourself.

Emily Woodward PIC (23:07)

That’s a really great point to have some people to help take the load off of you a little bit.

Bonny, Justin (23:13)

Yeah.

Emily Woodward PIC (23:14)

We could also link some resources, Justin, if you want to include any resources. We can include them at the end of our episode as well, some of the ones that you might have just mentioned.

Bonny, Justin (23:26)

Yeah, definitely,

Emily Woodward PIC (23:28)

Thank you, Justin.

Bonny, Justin (23:30)

Of course, thank you for having me.