Patrick Cadigan: 0:01

Post Secondary Transition is about getting ready for life after school for students with disabilities. It involves learning important skills that will help them do well in jobs, college or other activities. These skills might include things like communication, socializing, or learning how to handle different types of jobs. The idea is to give students the tools they need, and make choices about what they want to do in the future. It's like a bridge between school and the rest of their lives. The goal is to help them be as independent as possible and have the confidence to make their own decisions. It can be an exciting journey of growth and self discovery. Welcome, this is the Post Secondary Transition podcast. We have conversations around this process for families of students with disabilities. I am one of the hosts My name is Patrick Cadigan. I am a public school special education teacher. Who is my co-host?

Meghan Smallwood: 0:53

I am Meghan Smallwood, and I'm a public school transition coordinator.

Patrick Cadigan: 0:57

All right, so now we're going to go ahead and dive in. Meghan, do you want to set us up for today's discussion?

Meghan Smallwood: 1:06

So one thing that always comes up when those milestones are approaching, you know, 18 is a big one. Parents start asking me about what happens when my child goes to the doctor, you know, they've heard from other parents, well, the doctor is going to tell you, you can't come in anymore, and they're an adult now. So what does that mean? And what does that look like? What should you know about health care transition as you prepare for those milestones?

Patrick Cadigan: 1:32

Okay. Typically, like we always do, let's start off with a definition. What does, if you were to give a definition, what does healthcare transition mean?

Meghan Smallwood: 1:42

So it's basically that process of moving your child to that adult model of healthcare. And it could mean transferring to a new doctor physician could not but you know, it's individualized. I know, there's been some research done. And it said that at least 85% of those youth with or without special needs, don't have any anticipatory guidance about health care transition from their providers.

Patrick Cadigan: 2:10

Okay so those are some big words, anticipatory guidance, what does that mean?

Meghan Smallwood: 2:14

So basically, a lot of times the doctor is not prepping them, you know, a, you're technically an adult, now you're going to be 18. You know, some doctors are better about it than others. But there's a lot more ownership about your health care, and what decisions need to be made on yourself when you turn 18 for anyone with or with a disability. I remember when I turned 18. And now it's basically my decision, am I going to get that flu shot? Am I going to have this procedure or this treatment? You know, it's, it's, it's kind of scary, especially like if you regular child going to college, and all of a sudden you're faced with, I can't have mom in the room to tell the doctor what to say, think of that parent who has a child with a disability, and big questions are now being faced with their child.

Patrick Cadigan: 3:02

Okay, so as I'm thinking about the families, and where they can start, the question that comes to my mind is, what should families be asking their doctors?

Meghan Smallwood: 3:13

So while you have that time, as your child and adolescent, you can start the conversation, you know, I know when they get to 18, they're technically an adult. So how can I best prepare them to meet with you alone or for part of their visit, so that they become more independent and know more about their health or health care? Even with their disability? How can things be explained in that simpler form, so that they can understand that you can ask your doctor what age they would recommend their child changing to a new doctor for adult health care. I know a lot of families who have been seeing the same doctor and I know in our area, specifically, we have specific Institute's that treat specialized areas, they might continue to see your child until 21. Or even further down, but a lot of doctors, other parents have said, don't feel comfortable because they are pediatric. So they will start suggesting, hey, you might want to explore options and maybe we can give you some recommendations. But before you do you transfer to a new adult doctor. You know, get those suggestions or recommendations and make sure that they are communicating with that new doctor to send all the information that needs to be shared over to them.

Patrick Cadigan: 4:25

And then how does adult care compare to pediatric care, like what changes?

Meghan Smallwood: 4:35

So we all know you know, with your kids in pediatric care, the parent or your caregiver is with them for the visit. They're answering questions or explaining any medical conditions that might have come up medicines, any medical history, and they're very involved in making the choices about the care when they're getting older. And a good practice to start preparing, you know, getting them ready for adult care. or is to include them when they make their appointments. Include them when they make choices, or you're making choices about their care. And have them ask you, you know, get them used to having to take some ownership, because a lot of doctors will inform the parent. And when it comes time for adult care that the younger adults going to see the doctor alone, unless there is an agreement, which we'll talk about for others to be present, the young adult is going to be asked directly by the doctor, you know, questions about their medical conditions, any medicines, they need to know the information about what they're taking? And how much any history, you know, have they been hospitalized? Is there anything that they need to share? And again, they're going to be responsible for their appointments and their medications.

Patrick Cadigan: 5:48

And with so many of the conversations that we've had around transition in general, they're all...18 always seems to me to be that big number. So what happens for health care transition...what happens at age 18?

Meghan Smallwood: 6:02

Yeah, I always feel like you know, you start the conversation with parents at 14, because that's the transition, you're in Maryland. And then I'm like, ok we'll check back again next year, we'll check it back until you know, until 18, and you have parents who really want to talk a lot about it prior to 18, which is great. But like we said, 18 Is that like, tremendous milestone, the youth becomes a legal adult technically. And not only does that impact, you know, other areas of your life, it impacts health care. And depending on the doctor, some understand a little bit more a little more lenient, if they know that the child might need some help, but many will say I'm just speaking to the child and not the parents about the health. And of course, you know, health information, medical records are private or confidential and can't be shared unless the young adult gives the okay. And that can be something as simple as a HIPAA form being signed. So I think the big takeaway is, when they turn 18,"oh, my god, no, you can't have any involvement." You know, the, it's not a overnight switch, there are things that can be done right away, before you make bigger decisions, like a simple form to be signed, the young adult has to make sure that they are giving permission that they want to shared. So it's as simple as them saying, I want Mom, I want mom to help me, you know, and then just having that form signed. But when you do turn 18, and the doctor is talking to the young adult, not the parent anymore, it does become a little trickier when it's not maybe just a doctor, if you have other doctors that suddenly are new to your child and don't aren't as familiar with you. If there's a hospitalization, like I know, a lot of family start to get nervous, you know, as they get older, what happens I worry about the safety and protection of my child, I want to make sure that they are taken care of not taken advantage of that I'm aware of everything. And there are many alternatives besides just the form the HIPAA form I mentioned, to give you that privilege, and we'll talk a little bit about that.

Patrick Cadigan: 8:14

And then just for the uninitiated, and I can't imagine there's not too many who are not initiated in this, however, what is HIPAA?

Meghan Smallwood: 8:23

Ha! HIPAA, it is Health Insurance Portability and Accessibility Act. Thank goodness, I have a cheat sheet. Because again, I am not a doctor, I do not work in a doctor's office. But I've heard enough from parents and you know, had experience over the years that it's breathe, it's okay, you know, 18 can be scary, but there are simple things that can be done to help.

Patrick Cadigan: 8:52

Okay and this is essentially a law that, as I understand it gives privacy rights to minors or people under the age of 18 for reproductive, sexual health, mental health, and then anything else?

Meghan Smallwood: 9:08

And substance abuse services.

Patrick Cadigan: 9:10

Oh, okay. All right. So and then, does that. Does that change from state to state? Or is that is it like a blanket law that covers everything?

Meghan Smallwood: 9:21

Yeah, I would if you were planning on moving or if you're listening from a different state, I would definitely check with your state's minor consent laws for more information on that area.

Patrick Cadigan: 9:30

Got it. So what can families what can families do? They've hit 18? What can they do?

Meghan Smallwood: 9:38

So like we said about that form, you can have a forum so that you're able to see their medical records be a part of their visit. If an individual needs help making decisions, you can talk to your family, your support team, and your doctor about who needs to be involved and what you need to be doing to make sure that they're part of the conversation. I think something that can be done before 18 Again, we always talk about advocacy. I know it's a big topic with the IEP team with the school team. Having the child, young adult recognize, I need help, I need some assistance. Can you help explain this to me, you know, those are things that they're going to use, especially when it comes to health care, and speaking up for themselves that they might not understand something they need clarification, they need their support people.

Patrick Cadigan: 10:26

Why do I feel like that, then this is a conversation that can transition into a discussion, which we have had before, by the way, but a discussion around guardianship.

Meghan Smallwood: 10:38

Ohhh... Am I...

Patrick Cadigan: 10:39

Am I going in the right direction?

Meghan Smallwood: 10:39

You are hittin' the nail on the head? Because you know at 18 guardianship is that hot topic that comes up. Well I need guardianship, because the doctor is not going to let me in the room. It is...guardianship is one tool in the toolbox. I know, our friends at Disability Rights Maryland, have used that expression, and they do a wonderful job of presenting all the tools in the toolbox. So do not ever let anyone in the state of Maryland tell you you were required to get guardianship. It is a choice for you and your family. Now that changes based on the state but in Maryland, that is how how it is.

Patrick Cadigan: 11:20

And then I will say that that is I know that we've had conversations in the past we have had this discussion before around guardianship, but I think we have yet to have that conversation around alternatives to guardianship. So I have a sneaking suspicion that there is a future discussion in the works. But in specific to health care transition, what are alternatives or other options if guardianship is not on the table?

Meghan Smallwood: 11:47

Yeah, so now we said about the HIPAA form, it's a simple, you know, one, and again, we're not talking just about our adult young adults with the most severe disabilities, this is for anyone who might need a support person, you know, to help them with these things. HIPAA form as a simple one. An Advanced Medical Directive is another option that can be done. supported decision making is is a great one that was recently passed in Maryland. And there's a number of states it's supported as well. And it's an alternative to guardianship that allows the person to keep their decision making authority, because that's what we want, right? We want them to be in charge of the decisions for their life. So it's a great alternative, rather than appointing a substitute decision maker, which is a guardian. So this allows the person to select one person or a team to help them think through and decide and communicate their decisions for, you know, in this case, the medical part, the supporters are there to ask questions, Listen, give them some advice, but not make the decision for them. They have to respect the young adults decision, whatever it may be, and the person retains their right to make those decisions. It is recognized as best practice and it preserves the civil rights of people with disabilities. So it's really eliminating that need for a guardian or a substitute decision maker, in many situations.

Patrick Cadigan: 13:13

Supported decision making in practice for health care. How would you describe that?

Meghan Smallwood: 13:20

So the supporters that they pick, you could like I said, it could be a team, it could be mom, it could be dad, it could be someone that knows them really well, they will help the young adult receive this medical information in a way that they can understand that they can make an informed decision. That could mean letting the doctor know that they need multiple meetings to discuss this so that they fully understand it. They need time to process they need it explained in simpler form. They need it written out whatever accommodation they need, because reasonable accommodations are under the ADA. So they're allowed to have them. They're there to help advocate for the person, if they need the time to make the decision if they need to call a team meeting to discuss it more. And the supporters, like we've mentioned before, can also use the HIPAA forms available to get information that they might need to help their supporteree make their decisions.

Patrick Cadigan: 14:15

As someone you've often talked about your sister, as you were growing up. So is is healthcare transition. has is that something that's as someone who's coming to the conversation who's very new to this whole process? Is that something that's changed significantly in the last couple of years?

Meghan Smallwood: 14:35

Oh yeah, great question. I mean, it's not...an alternative to guardianship was not something that was brought to my parents attention, I know, for a fact. It's definitely something that's really taken off in I think, with the way our country's changed with people with disabilities. You know, we've gotten away from institutions, we've gotten away from, you know, separate scenarios. We're all about including them and giving them the power and make the choices and decisions of their life. So it's definitely a turn for the better. And I wish this was a choice for my sister. And I wish my parents knew about it because my sister would be completely able to provide her own choices and decisions towards things. Of course, she needs her team, and she recognizes that, but I think even though we have guardianship now, we still do the best we can to provide her that but obviously, we're limited. So, yeah, it's just, you know, it's just interesting to think, what could have been, and I wish that it was an option. So that's why I think it's so important for me, to make sure parents know all the options before they make their choice of guardianship or an alternative.

Patrick Cadigan: 15:47

I feel like this is one of those conversations where, you know, we're probably just scratching the surface that there's so many more that can be had. So, you know, again, maybe this is one of those, it'll come up at another time. But with that being said, I want to segue into, because I have a sneaking suspicion, Meghan, that you have a helpful resource. So we're going into our...

Meghan Smallwood: 16:11

I sure do.

Patrick Cadigan: 16:13

So Meghan, I'm gonna let you serve out our Well That's Helpful resource. Well,

Meghan Smallwood: 16:18

Well, Parents Place of Maryland and I know we've shouted out to them before, they are a great resource for a lot of this discussion. And they are the ones who actually shine some light onto the six core elements of healthcare transition, which helps define the basic components of healthcare transition support, which include establishing a policy tracking progress, administrating transition readiness assessments, planning for adult care, transferring and integrating into an adult practice. So there, if you actually go to the Parents Place of Maryland website, which I believe we'll probably put in the show notes, and I know you can find them on our website. Under their resources, they have a health care section and a transition section that provides a ton of additional resources on health care transition. And they have resources also available in Spanish, which was great. The actual website for the six core elements of health care decision can be found at www.gottransition.org.

Patrick Cadigan: 17:21

And once again, there will be a link in the show notes for that, because that's...

Meghan Smallwood: 17:24

Yeah, I was gonna say, Don't be writing it down right now, I'm sure you can find it on the show notes. But this, it's just an abundance of information. And just great to have. I did want to go back to the supported decision making, too. I know, we will probably talk more about this and go more in depth in another podcast, but just know, it is something that is recognized in Maryland and it's one of the less intrusive forms to help somebody make their choices. And we're always striving to have a less intrusive form, as opposed to the most intrusive form, which is guardianship of support. So definitely something to consider when you're looking at healthcare transition.

Patrick Cadigan: 18:05

Again, I have a sneaking suspicion that I'm going to start doing a lot more research into this because as I heard you talking, I'm like, Hey, I don't know anything about that. I don't know anything like that over there. I think I should probably know a little bit more about that.

Meghan Smallwood: 18:18

There's always more to be looked at and done.

Patrick Cadigan: 18:22

Very nicely done. Alright. So with that being said, we are always asking to follow the information from this conversation in our show notes, please, please, please like follow and share out the podcast, we are looking to broaden our audience and we want to get this information out to as many families as we can. Please visit our YouTube channel where we've posted videos of all of our conversations, including doing some of the legwork for you. We've curated videos of topics that revolve around transition. So we've got playlists, to cover guardianship, alternatives to guardianship, ABLE accounts, and there's updates all the time, so be sure to subscribe there as well. And finally, check out the website, which is chock full of information around the transition process. You'll find our contact information there. So you can go to www.postsecondarytransition.com. And we really appreciate the support. All right, Ms. Meghan, I know that we still have some more conversations to come.

Meghan Smallwood: 19:22

Always, never ending, which is good. That means we have more podcasts.

Patrick Cadigan: 19:26

Plenty more conversations to be had. I'll go ahead and sign us off. Thank you guys for joining us and we will talk to you soon.

Meghan Smallwood: 19:33

All right. Thanks, everyone.