MCH Bridges: The Official AMCHP Podcast

Episode #20: Care Maps: The Power of Mapping Support for Children & Families

• AMCHP • Episode 20

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This episode dives into the world of care mapping, as a continued conversation from a skills-building session at the 2024 AMCHP Annual Conference. Care mapping serves as a powerful tool to help families and professionals coordinate and enhance support and care for children and youth with special health care needs. By visualizing the complex network of care, these maps improve communication and foster a shared understanding among all involved. This episode also explores innovative uses of care mapping, including how it can aid youth in articulating their mental health needs.  

Tune in to join our guest speakers in discovering how care mapping can transform the way we approach and manage health care for children, families, and beyond!   

Resources: 

Hanna Howell: [00:00:00] Welcome to MCH Bridges, where we lift up innovative ideas and inspiring stories from people in the [00:00:15] maternal and child health field. My name is Hanna Howell. I'm AMCHP's Family Leadership Intern for the Summer and your MCH Bridges guest host. Before we get started, I'd like to disclose that this episode mentions topics of maternal mortality, loss, [00:00:30] and death.

Please prioritize your mental health and consider these themes before listening to this episode. As you listen to this episode, I encourage you to pause if you feel that you need it and take a break and reach out to any loved ones. If you need extra [00:00:45] support, resources related to maternal mortality can be found in the show notes.

Today, we will be delving into the transformative world of care mapping as a continued conversation from a [00:01:00] recent skills-building session hosted at AMCHP's 2024 Annual Conference. At its core, care mapping serves as a guiding light, uniting families and care professionals in the pursuit of optimal health and well-being.

From its family-driven, person- [00:01:15] centered approach to its meticulous attention to detail, care mapping shines a spotlight on strengths while highlighting the intricate web of resources essential for supporting children and youth with special health care needs and their families. Join us as we explore how this [00:01:30] comprehensive snapshot fosters a deeper understanding and shared vision among care teams, connecting the dots between every aspect of a child and family's needs.

To bridge the gaps between the home, the community, healthcare, and education, [00:01:45] families that are navigating the journey of raising children with special health care needs frequently find themselves in the position of primary care coordinators. This position oftentimes entails managing communication across a range of stakeholders including [00:02:00] community agencies, educators, caregivers, and healthcare professionals.

Having to manage these different entities can increase stress levels, take up a lot of time, affect one's job, harm relationships, and occasionally [00:02:15] leave needs unmet. This is where care mapping can come in. Care maps can aid in relieving some of this stress. Professionals and family members can partner up to create a care map that meets a unique set of needs for the child with a special health care [00:02:30] need.

This creates a tool to foster a relationship between professionals and the family where everyone is on the same page. This visualization technique offers an all-encompassing guide for whomever is caring for a child [00:02:45] with special health care needs to navigate and guide their care effectively. The powerful thing about care maps is that they are unique and subjective to each individual family.

It's truly an eye-opening way for not only the family, but the professionals [00:03:00] involved for the care of that child to visualize and conceptualize the levels and systems of care that all go into caring for that child with a special health care need. The unique thing about care mapping is that while its origins are linked [00:03:15] to using them with children and youth with special health care needs and they were originally created for the family, they can also be used in any way that you can come up with.

There are many new ways that they can be used. The opportunities to create a care map unique to [00:03:30] you are truly endless.

To better affiliate us with what care mapping is and how it is used pragmatically, joining us today is Becky Burns who will share a little bit [00:03:45] more about her experience training professionals using them. Becky Burns has spent her career supporting families who have children with special health care needs and disabilities.

Having been raised in a family with a sister who had significant [00:04:00] disabilities, she has a unique perspective of the family experience. In Wisconsin, she helped the Children and Youth with Special Healthcare Needs Program develop, provide, and spread the care mapping experience to families across the state.

At the [00:04:15] 2024 AMCHP Annual Conference, she presented the care mapping training to family members and professionals. 

Becky Burns: My name is Becky Burns and I am an independent contractor through BBWorks LLC. I work for different national programs [00:04:30] advancing mostly engagement with families and others who have lived experience in the Title V programs.

Hanna Howell: Please start by giving our audience a brief overview of what care mapping is and why it's important in the context of caring for children and [00:04:45] youth with special health care needs. 

Becky Burns: Absolutely. So care mapping is a process that parents of any children or anybody, it doesn't even have to be a child, can partake in and it's a simple mapping of all of the care that that [00:05:00] child with a special health care need requires on a daily or regular basis. 

So the concept behind it is that you simply get out a piece of paper and put the child in the center, put their family right around them, [00:05:15] and then start branching out from there for all of the different care that that child might need in their school programming, in their community programming.

Maybe they have home health needs, maybe they have child care needs. Everything that one can imagine where that [00:05:30] child receives support to get through their days and in their life. And the reason care mapping came to be is because it was a way to put all of that onto one piece of paper. 

There's so much that families are trying to navigate [00:05:45] especially in their child's health care, when raising a child with a special health care need, that this gave them the opportunity to map all of that out, all in one place, all on one piece of paper. So they could then have conversations with the professionals that [00:06:00] support them to say, look at what's going on in my child's life.

Look at all of the support they're getting. Let's find the gaps. What's missing from my care map? And is there any way we can make this convoluted map any easier? Do [00:06:15] you see overlap in the support that my child's getting? Where we could simplify things a little bit for their life and for our family's life.

Hanna Howell: Like what Becky said, care mapping can open not only the family member's eyes, but the healthcare provider's eyes to a [00:06:30] lot that's going on behind the scenes that they might not know about. It can help identify gaps in services that that child might be experiencing that would not have been identified if that care map wasn't made.

However, it [00:06:45] also sheds light to positive things that that child might be experiencing. Positive services and care that that child needs. Overall, like Becky said, it's really a way to visualize [00:07:00] every part, every entity that goes into the care of that child. My second question is, how did you first become involved in care mapping?

Becky Burns: Well, that takes me back a bit. Care mapping has been around for over a [00:07:15] decade. When I was involved in a children and youth special health care needs program here in Wisconsin, we found care mapping to be a really helpful tool for the families that we were supporting. And so we would offer trainings to families [00:07:30] so that they could create their own care maps.

So I think that's where I first got involved in it, was to try to create a training for families. And it's a really nice opportunity because you can gather families in a room and they can all do it together. And [00:07:45] they can even do it on big paper on the wall and be creative and support each other through the process.

They kind of start generating ideas after looking at each other's care maps. They realize, oh, I forgot about insurance. I should add that to my care map. And so [00:08:00] they get to really have some supportive time with other parents while creating their care maps. And so I think that's how I first got involved with, was in training some parents on how to use it.

Hanna Howell: Yeah, the aspect of creating them with other parents and having that sense of community. [00:08:15] That's a really powerful thing. My next question is like walk us through the process of creating a care map. So what are some elements or steps involved in that process? 

Becky Burns: So in order to create a care map, the [00:08:30] key elements is that you put the child in the center and you put their families right around them and then from there you can branch out and you can think about different categories like medical, or school, recreation, community, social [00:08:45] outings and activities, legal and financial, needs and supports that that child or family has, social services, advocacy and information, spiritual connections, transition, work, housing, transportation, caregiver [00:09:00] support.

So the categories are endless, whatever it is for that individual family. They can branch out from that center and make those connections, and then they can get as detailed as they want. They can get right down to the name of the [00:09:15] occupational therapist that they see at school, or the speech therapist they see at the clinic, or list all of the specialists under the medical category, or they can keep it more generic and just have the categories.

So it's really an individual experience how [00:09:30] detailed or how general you go. Lots of families will use different colors for those different sections, those different categories will pop up in different colors. And some families have taken it well beyond that. I've seen some care maps where [00:09:45] people have taken their family photo and built the care map off of the photo and listed different needs that every member of the family has.

I've seen a family that made a care map that looked like a flower garden, where the blades of grass were all the support that the child [00:10:00] received, and the petals on all the flowers were their wishes and hopes for the future. So it really can go in lots of different ways, and it's as individual as every individual child and family is.

Hanna Howell: I definitely think that is one of the most beautiful things of care [00:10:15] mapping. It's super individualized to that family and the care of that child, and it makes it just a unique way to visualize it all in one place. It also allows for whomever is crafting and curating that care map to be [00:10:30] as creative or as not creative as they want to.

And I just really think that that's a beautiful thing because being able to be creative with it makes it that much more relevant and salient to you as the person that's going to be using it. [00:10:45] 

How do you approach teaching and explaining care maps to individuals or professionals who are maybe new to care mapping?

Becky Burns: What I like to do is just give them images of a lot of different care maps. We have permission to [00:11:00] share different photos of care maps. Like for example, there's a care map for a family that has three children with special health care needs and they put all three on one care map. Believe me, that's a picture to see.

That's got so much going on on it. All of these [00:11:15] different ideas that I suggested earlier. So we just kind of bombard them with different images of care maps that different families have done just to kind of get their creative juices going. And it doesn't really take much more instruction than that to [00:11:30] get families involved in the activity.

As far as working with professionals and how they're going to interact with care maps, that takes a little bit more explanation because I think when they're first presented with a care map, they have the chance of possibly making some judgments about what [00:11:45] they're seeing. Like, wow, that's a lot or making some value judgments about what the family has chosen to put on their care map.

And that's not their role. Their role is to look at that care map and let the family explain it and help the [00:12:00] family identify where there are gaps or where there are overlapping services that they could possibly help them kind of streamline it. So it's not so complicated. 

We've had doctors look at care maps by families and then say, [00:12:15] wow, I had no idea so many people were touching your child throughout the day and the week and the month and the year. There's no need for you to see me every other month. Why don't we change to every six months you come in and see me? And that's a huge relief for that family to [00:12:30] cut out a couple extra doctor's appointments that they don't need to have.

So sometimes it does help professionals get kind of that appreciation of the big picture of what this child's entire life looks like rather than just the piece of the pie that they're [00:12:45] involved in. 

Hanna Howell: How are care maps typically applied in practices across the MCH discipline? 

Becky Burns: There are lots of different ways you can apply care maps.

So we've been talking about kind of the classic one, right, where a family creates it for a [00:13:00] child in the center. One of the times I created a care map with a fictitious child in the center, and I again had all of those branches out to all of the services a typical child with special health care needs might receive from the community or [00:13:15] from school or for medical folks.

And then what I did was that it was in the middle of COVID. And so I put a line through every service that was no longer accessible to that child because of COVID. PT and OT wasn't happening anymore. They weren't [00:13:30] going to school. They weren't able to see their doctors. We all know how crazy and convoluted COVID was for all of us, but for kids with special health care needs, it was really quite drastic because so many people are physically involved in their day-to-day life that [00:13:45] when you eliminate all of those, there was a lot of support missing.

And so it was a really helpful way to visualize for everybody to visualize COVID is doing to these families and what it means for these kids to lose all of these [00:14:00] services in a day to have to suddenly be cut off from all of that support. And so what did that leave for the family? And have a better appreciation for the stress that family might be under when COVID was happening.

Another way of a [00:14:15] person recently used a care map, she was involved in an MCH program and working with maternal mortality, and she drew a care map around a patient that she knew, and this [00:14:30] woman was giving birth. 

And so, again, drew all of the services that were available to that pregnant woman, and put a line through, so kind of the same concept of marking off the services that she wasn't able to access [00:14:45] for whatever reason, in this particular scenario, unfortunately, in this scenario, the woman didn't live. She unfortunately passed during the process of delivery, and there was a question about, look at all these services that were not available [00:15:00] to that person. Well, they were available, right? So they were available, but she couldn't access them.

So it was a real access issue, and it was a way to really dramatically illustrate perhaps why this person's no longer with us because [00:15:15] the support she needed just wasn't available to her. 

Hanna Howell: That's a very powerful way to, like, see that and just have that visualization because not everyone's always aware of, like, where the gaps are and where the accessibility issues. So, like, having that [00:15:30] visualization, I just can't even imagine how powerful that was to see for everyone in the room. 

What are some challenges that an individual might encounter with the use? of care maps and how can these challenges be addressed or mitigated? I know you'd mentioned earlier, a [00:15:45] professional might look at the care map and be like, that's a lot, but yeah, if you could just talk a little bit more about kind of that and what you've seen.

Becky Burns: Yeah, I think the first challenge for, for families and when they create a care map. Is that they also for the first time see it all in one place and [00:16:00] it's not uncommon for families in trainings to say, Well, now I know why I'm so darn tired all the time. Look at all that I'm trying to manage. And what's really true in our system right now is parents are really the care coordinators for their children.

We would love [00:16:15] to have care coordination be universal and every child receive it and it meet all of their needs. But so often when we talk to families, the parents say, you know, I'm care coordinating the care coordinators like we have them, but they only know the care in their [00:16:30] bubble. They don't understand all of the services that I'm trying to coordinate so that they all work smoothly and my child can thrive.

So the care map. is helpful, but it also is kind of a, oh my gosh, I really understand [00:16:45] why I'm so overwhelmed. And this is, this is kind of a lot for me to handle. So there's an emotional reaction for many families when they create that care map. I think the other challenge as, as you referenced, is sharing that care map, and [00:17:00] it's kind of a personal thing once you've created it, and so that's why we do encourage families that it's really up to them what they're going to include and what they're going to not include on that care map.

I mean, it's got to work for them, and maybe they have a different care map [00:17:15] that they share with, with school and a different care map that they share with, um, doctor's offices or something like that. And so when you're sharing that, it means people are seeing everything that you're trying to manage in your child's life and may, they may make judgment that you're an [00:17:30] overachiever.

Why in the world do you have your child involved in recreational activities when you have all of this other stuff going on? I don't know what kind of judgments people might pass on them, but they're open to that. They're vulnerable to that because they put it all out there in one [00:17:45] place. families need to decide if they're going to share the whole care map or what we see more and more is families using the care map to kind of design their story or to tell their story.

So they can use it as a resource to think [00:18:00] about the things that they might want to include if they're trying to advocate for certain services or advocate for medical needs that their child has. It might be helpful to them to look at their care map and say, yeah, you know, here's why I need this support because I've got my [00:18:15] child doing this over here and that over there and this over here.

And I really need to have better transportation because I'm trying to get them to all of these things. That's just an example, something that might tie these things together that they [00:18:30] want to advocate for. They can use their care map to tell that story. Even without sharing the care map with others.

Hanna Howell: Lifting up what Becky said, you can use care maps to tell your child's story, to tell your family's story. And you [00:18:45] have personal autonomy in as much or as little of that story that you want to share through how you create that care map and what you put on it.

Are there any [00:19:00] emerging trends or innovative ideas in care mapping that you, that particularly excite you? 

Becky Burns: Well, it's pretty common that when we do a training on care mapping, people ask if there is an electronic [00:19:15] version of these, and we don't. I don't know of a good one. Sometimes people in the audience say, well, I've heard of this or I've heard of that.

I haven't seen one that has really worked well for families. So that's something I'd love to see. There is actually a app [00:19:30] in the app store called CareMap and it's built off of the concept of a care map. It's built by Boston Children's Hospital, who also created the very first care map. So it definitely has all of the elements of a care map in it, but it goes beyond.

It really [00:19:45] becomes kind of a medical organizational app where you can get a, put everything down that's going on medically for your child, which is a very helpful app. It's not quite the same thing as a care map. That one just drew on a piece of paper. So I would like [00:20:00] to see that for families who think that way and where that's better, easier, more accessible to them than for folks who feel intimidated by hand drawings that might feel like they're too sloppy to share with other people.

If you did it electronically, it would [00:20:15] certainly look more crisp. On the other hand, my hesitancy is just that process that I've heard from families of drawing it out and doodling while they're doing it and talking with other families while they're drawing it. [00:20:30] There's something there. There's something of value there.

There's a process for those parents that they go through that I think if they were just doing it on their phone, it would become much less. kind of engaging with the emotions of what it's [00:20:45] like to raise a child with a special health care need and become more of an academic process. So I think there are pros and cons to the thoughts of finding an electronic version and doing it that way.

We do, on the other hand, though, encourage families to take a photo [00:21:00] of their care map so that they can share it electronically and they can forward it to whoever they want, you know, so it kind of becomes electronic in that regard, which is handy for, for sharing with others. But I do think doing, um, a care map, In [00:21:15] electronic format may lose some of the kind of cathartic elements that come from doing it on paper.

Hanna Howell: Yeah, definitely. I feel like in a world where like everything is on our phone, everyone's on their phone a lot, the process of hand drawing it. There's something to be said for that, for [00:21:30] sure. 

What advice would you give to professionals or organizations looking to integrate the use of Care Maps into their work?

Becky Burns: Yeah, I'd encourage him to do it. I've, yeah, I've never had an experience where somebody didn't enjoy creating their care map or thought that it was [00:21:45] not of value to create a care map. Care mapping is such a great tool to just get conversations started. Kind of doesn't matter what you want to talk about.

Let's, let's just pick a topic like, transitioning youth to adult care. Well, let's [00:22:00] do a care map of what that might look like. Let's do a care map that shows the services that I have now. And let's overlay the services that that child may need as an adult or something like that. Or let's do, you know, services now in blue and services that they're going to need in green. [00:22:15] 

So we can start to see what does that look like? And where are there similarities and where are there things we can pull from their, their youth into their adulthood? And where are there things that we're just going to have to start from scratch? So it doesn't really matter what the topic is or what the challenge is.[00:22:30] 

Starting with a care map kind of helps put the picture together and illustrate the landscape that you're trying to accomplish, whatever it might be about. The original view of the care map is everything, but you can do a care map specific to a time in their [00:22:45] lives or a transition. We're moving from this state to another state.

Let's do a care map of what we have now while we're here and we're thinking about it. Let's share that with the folks in the next state that we move into. This is what we had when we lived in that other state. How [00:23:00] do I do this here? So again, just, there are so many different applications that regardless what a focus that a family serving organization may have, I think using care maps to kind of get the conversation started.

[00:23:15] It's a simple way to do it, and it benefits the family, and it helps everybody think clearer about the future. 

Hanna Howell: Yeah, definitely. I love how unique they are. How do you think Care Maps can foster a better collaboration? Between MCH and our [00:23:30] health care professionals and the families using them. 

Becky Burns: Yeah, I think MCH has a perfect opportunity to help families or help whoever they're serving create their care maps.

They can be the helper, you know, the [00:23:45] conduit between families and medical professionals. They can, be the ones that say, hey, let's get together. Let's create a care map because I think it'll help you explain to your doctors the type of care you need or the type of care you have. Again, [00:24:00] be as creative as you want to.

And then we can have that conversation with the medical providers. And. Medical providers will stay engaged with you longer if you're showing them a care map and going over the services that you have versus the services that you want. [00:24:15] And so I think MCH has a role to help families or help the people they serve create their care maps and use them to tell their stories.

Hanna Howell: Finally, what do you [00:24:30] hope listeners will take away from our discussion about care mapping today? Or is there anything else that you would like to highlight or touch on before we close out? 

Becky Burns: Yeah, I think the main thing about care mapping is that it's really accessible. And so if you've ever been [00:24:45] thinking about doing a care map, or you've heard about them but weren't sure about it, go ahead and give it a try.

It's fun to be in a training with other parents, but you can do it at home, you can do it on a napkin in a restaurant, you can do it wherever you are. And just see for [00:25:00] yourself what you think, if that has value for you or not. But generally we've seen that people that have gone ahead and made them. found them very useful and usually then go on from that to find multiple ways to use them in their child's life.

So I [00:25:15] hope that there might be a few folks out there that have thought about them before, who maybe now will give it a try. 

Hanna Howell: Lifting up what Becky said, I think if you're hesitant on whether or not to create a care map, I say go for it. It's truly unique to you [00:25:30] and you can be creative and flexible with it.

You have the opportunity to play around with it, to craft it exactly how you want. And you can draw up a care map and be like, this doesn't encompass anything that I was trying to [00:25:45] convey at all and recreate it. So it's truly a very flexible thing and something that you can play around with in order to create the ideal, like, perfect care map that you want.

Becky provided a lot of great insights [00:26:00] into what care mapping is, how they are used in real world settings, and innovative ideas for future uses of them.

Now here to [00:26:15] share her personal lived experience with navigating care for her child and with using care mapping, joining us is MahalaTurner. Mahala Turner is a Family Liaison Specialist at the Division of Child and Family Well-Being, where she [00:26:30] assists and provides leadership to staff on the development and promotion of children health services and family related issues to ensure family-centered, culturally sensitive, and community-based approach to services for children with special health care needs.

Prior to this [00:26:45] role, she worked for a local non profit to support families of individuals with Down syndrome. She holds a bachelor's and master's degree in special education and was an educator for 12 years. Mahala, her husband, and their three children live in Wake Forest, North Carolina. [00:27:00] Their youngest son, Beau, happens to have Down syndrome.

Mahala attended her first AMCHP conference in 2024, where she was introduced to care mapping. And in this care mapping session, Mahala had the opportunity to create a personalized care map that [00:27:15] shows the people and services involved in Beau's care. Join us as we hear a little bit more about Mahala's story with coordinating care for Beau and her experience in the real world using care mapping.

Mahala Turner: My name is Mahala Turner, and I am the Family [00:27:30] Liaison Specialist in the Division of Child and Family Well-Being, the whole child health section. 

Hanna Howell: Please explain what care mapping is and how it personally impacted your life and the lives of your family and child and the community [00:27:45] around you. 

Mahala Turner: Yes, so care mapping is It's a visual way to tell your story.

And by your story, I mean the story of a family or a person with a disability. [00:28:00] In my case, it's used to tell the story of my son, Beau, who has Down syndrome. He's seven years old. And so when I first learned about care mapping, I was able to visually sit down and create this care map that looked at all the [00:28:15] areas and places of support that he has in place.

I first learned about care mapping at the AMCHP conference in 2024. At the time, I was a little new to my role in North Carolina with the [00:28:30] Division of Child and Family Well Being, and I had been there for about a year and then had the opportunity to attend AMCHP, and one of the first sessions that I attended was on creating care maps.

I was really glad that we [00:28:45] had, they had carved out enough time for us to actually create our care map during the session and have that hands on time and this space and the opportunity to really think about. our child and the supports that were already in place because [00:29:00] had I gone to the session and learned all about care maps and then had the homework afterward of creating my own care map, I'm not sure how long that would have taken me or if I would have ever gotten to that far down on my to-do list of things to [00:29:15] do.

And so having that space was really helpful as I was doing it alongside a room full of other parents who were also building their care maps. I found that it was It's really therapeutic for me as, [00:29:30] you know, a caregiver parent to just have that visual of look at all the ways and all the people who care for Beau and support Beau and, 

Also a sense of pride because it's like, I [00:29:45] built this, you know, maybe I have it together a little more than I give myself credit for. My husband and I, we, we worked, we've worked really hard for seven years to ensure that he has as much supportive place as possible. So first of all, very therapeutic [00:30:00] and helpful for me personally.

Secondly, another way that I have used it and plan to continue to use it is in education. One of the things we do every year is meet with [00:30:15] Beau's educational team to talk about his progress and make a plan for the next school year. And so this is a really great compliment to something I already had in place, which was like a one page, just get to know [00:30:30] Beau, she, what he prefers, how he learns best, things like that.

The care map is a great compliment to that so that his educational team understands like, you know, yes, education is very [00:30:45] important for us, but there's also all of these other systems in place that are supporting him as well. 

Hanna Howell: Yeah, yeah, definitely. What have been some of the biggest challenges you've faced in coordinating care for Beau, your child?

Mahala Turner: [00:31:00] One of the biggest challenges has been that we don't always have a good fit on the first try. Just an example I can think of is with oral health care and going to the dentist. It's [00:31:15] taking us several different tries with different providers to find that good fit for him. And that was something actually, as I was creating his care map, we kind of joked, some of the people who are sitting around my table, like, oh, on the other side of the [00:31:30] paper, we have our care map graveyard.

And that is like, things that haven't worked out, you know, ways that we weren't supported or, you know, just things that kind of were a dead end for us. 

Hanna Howell: How did care mapping help you overcome these [00:31:45] challenges and advocate for Beau’s care and for just better and more person-centered care? 

Mahala Turner: So one of the things that I've realized is the importance of having health care providers that are willing to work [00:32:00] alongside one another with Beau at the center of care.

For example, that looks like his ENT and the dentist and possibly other providers, pediatrician, whatever, [00:32:15] working together to ensure that he's getting the best care possible. You know, like if he needs a hearing test, but he also needs dental work done, then let's connect those pieces on the care map so that we can do that [00:32:30] all together at once instead of having to put him through multiple visits to providers, all of the time and effort that it takes for that.

But then also it is able to show where the holes are, you know, like, okay, I see [00:32:45] that we're missing this little piece right here. How can I make sure that that it happens for Beau?

Hanna Howell: Care mapping is. a really great way to get everyone involved in that child's care on the same [00:33:00] page. It's a visualization technique that can be used amongst many providers that helps them see eye to eye and understand the amount of energy and time and pieces that goes into the [00:33:15] care coordination of that child.

How would you say care mapping has fostered collaboration and communication amongst your family, health care providers, community, and other stakeholders? [00:33:30] 

Mahala Turner: Well, something that's important to us is that Beau is embedded in his community and he is a valuable member of his community. And so using the care map has [00:33:45] once again, kind of helped me to connect the dots, especially within the community, what opportunities are out there that we can plug into that can support Beau alongside his peers in the community.

And then it's, [00:34:00] funny how it kind of all connects with, you know, that kind of connects to education and, and even breaking things down when you look, you know, education is the big bubble on the care map, but what about transportation? Beau desires [00:34:15] to ride the school bus with his peers. So what does transportation look like?

What does his regular education time versus school? And this is a way that I can use to make my students time within a special education classroom look like. I need to work also with the school nurse. He also has an asthma diagnosis. [00:34:30] Bringing that into it, then that connects over to healthcare and you know, it just kind of all somehow connects with one another.

Hanna Howell: lifting up what Mahala mentions. There are so many different moving parts and pieces that [00:34:45] if you're not caring for a child with a special health care need or Beau in this instance, you don't know about your blind to because you're not. doing it. So creating a care map can show individuals [00:35:00] involved in your child's care, hey look, like, these are all the moving parts that are involved in my child's care, how can we streamline this?

How can we make the care team involved with my child see eye to eye. So drawing out a care map really [00:35:15] opens eyes for individuals involved in the care of a child with a special healthcare need.

Please share an example of how care maps improved [00:35:30] coordination in decision-making in your caregiving journey. 

Mahala Turner: I mentioned earlier one of the things. that I realized from, from having this visual care map was, you know, how to link his different [00:35:45] specialists to one another so that it's more of a seamless system of care for him so that his dentist is working alongside his ear, nose and throat doctor. He needs to have a [00:36:00] sedated hearing test. So okay, while we're doing that, let's pull the dentist in so we can do dental work. And then is there anybody else we need to pull in while he's sedated so that we don't either have multiple sedations or [00:36:15] he misses out on some of the healthcare he needs because we don't want him to have multiple sedations.

Hanna Howell: Were there any barriers or setbacks that you encountered while using care maps? And how did you overcome them? If there were any. [00:36:30] 

Mahala Turner: I don't know if I would consider this a barrier or even a setback, but something I realized as I was creating those care map was, and I haven't mentioned this yet, but he has siblings.

One of the things that can happen is. You kind of [00:36:45] hyper focus on your child with a disability and you don't forget about their siblings, but you also, you know, like where is Luke's care map? Where's Delarosa's care map? So it kind of inspired me to also think about like, [00:37:00] everyone deserves a care map, even myself.

I mean, my husband needs his care map. So, right. Um, just pulling his siblings into the picture and seeing, you know, where there may be places that they could be supported [00:37:15] more, or even that coordination of care for them as well. 

Hanna Howell: I think what Mahala mentions is a general theme that we've seen throughout this episode.

And that is the idea that care mapping is unique and can be for everyone. It doesn't [00:37:30] have to just be for a child with a special health care need. You can create a care map for yourself. There's really so many opportunities and ways to utilize and capitalize on care mapping.

What advice [00:37:45] would you give to other families who are considering incorporating care map into their caregiving journey? 

Mahala Turner: What I'm hoping is to continue to gain personal experiences using our care map and then turning that [00:38:00] around to be able to empower others in the community to create their own care maps and use those for health, education, recreation, financial, and more.

thing, [00:38:15] home care, all of, all of the different areas, a care map is very unique to the individual and it can empower families and people in different ways. 

Hanna Howell: How do you envision the future of care mapping [00:38:30] evolving and what potential benefits do you foresee for individuals and families?

Mahala Turner: I think it would be really nice if everyone who is involved in the care and support of someone with a disability to really find [00:38:45] the value of care mapping.

What I mean by that is like, when we go to the doctor, when we go to the pediatrician, I'm not saying, oh, here's those care map. I'm not pulling the care map from my purse or my bag, but the doctor is [00:39:00] actually saying, here's the care map that we looked at last time. And I have it right here. So they're the one to initiate that and, and us looking at that together and check, kind of a check-in process of, okay, well, I see last time you had [00:39:15] this and this and this listed for recreation has anything changed with, you know, in your community as far as that goes, or what about education?

So I think it would be really nice to see, you know, or even a teacher. At his, at those annual meetings, [00:39:30] let's pull out his care map and see, you know, what can we update? What can we add? What needs to, what needs to improve? 

Hanna Howell: And that's something that I want to really quickly mention that Mahala touches on is that care maps are ever evolving.

You draw one at the start, but you [00:39:45] can update it as you need, as the care for your child changes or updates, or there's needs that are unmet that you need to address and it really is a documentation tool for healthcare providers [00:40:00] and anyone else involved in your child's care to see from time to time what's been going on.

What changes or improvements would you like to see in the implementation and accessibility of care mapping tools and resources? 

Mahala Turner: Well, [00:40:15] hopefully care mapping can also be used to inform policy. That would just be amazing. I can envision, you know, a room where policy is being discussed and maybe some brainstorming happening [00:40:30] and there are parents at the table in the room and each one has their own care map and the policymakers are looking at those care maps and studying those to inform how they can [00:40:45] create policy that supports the families.

Hanna Howell: Yeah, that would be super powerful and like a really good way to inform policy that like really meets the pragmatic needs of families and communities. Is there anything additional that you would [00:41:00] like to share or you would like me to know before I close this out? 

Mahala Turner: Just a challenge for anyone that's listening to experiment with creating a care map.

It can be for yourself, it can be for someone, you know, if you have [00:41:15] children or especially if you have a child with a disability or if you care or support someone that has a disability. I just encourage everyone to give it a try.[00:41:30] 

Hanna Howell: As we end this episode of MCH Bridges, it's clear that care mapping holds immense promise in reshaping our approach to healthcare and to the care in supporting children and youth with special health care needs and their families. [00:41:45] Through the insights shared by our guests, we've witnessed the power of care maps in illuminating the complex webs of supporting surrounding individuals and families.

But beyond the boundaries of our discussion today lies a vast horizon of possibilities and [00:42:00] new ways to explore care mapping and its uses. One particularly exciting avenue is the application of care maps in addressing youth centered health concerns. In an era where young people face unique challenges to their health and well-being, care maps can [00:42:15] offer a dynamic solution.

By involving youth in the process of mapping their own care networks, we can support them to take ownership of their health journey. From mental health support to sexual education and beyond, care maps provide a platform for young [00:42:30] people to navigate the complexities of the healthcare system with not only confidence but agency.

One intriguing example is the utilization of care mapping to address mental health concerns amongst youth. Care mapping can be an avenue for [00:42:45] youth to express their mental health concerns in a unique manner. It can be hard, or even somewhat intimidating, to find the right words to express concerns related to your mental health as a young person, but care maps can aid in expressing the [00:43:00] internal thoughts and feelings that an individual is going through.

As a young person myself, what can especially be a challenging situation to navigate is working with mental health care providers and being able to express and articulate what exactly I'm [00:43:15] going through. However, this is where I can see care mapping as a solution to addressing the navigation of this relationship.

For example, depicting mental health through a plant care map. In this care map, a plant [00:43:30] represents the individual. Off said plant are either thorns or roses. Roses in this situation represent positive experiences and situations that youth individual has experienced that have either improved or [00:43:45] boosted their mental health.

And thorns represent experiences and situations that may have negatively impacted that youth's mental health. Being able to draw and visualize this care map as a youth [00:44:00] identifying individual, it gives youth autonomy in how they express and articulate what they're going through. Presenting this care map at the start of a session with a mental health care provider can get that [00:44:15] conversation started about what that youth individual is experiencing, ultimately eliminating barriers that one might experience when trying to get that conversation started about what they're going through.

As a youth, it can be difficult to break that ice and get the [00:44:30] conversation started about mental health, especially with a mental health care professional that is someone that might be unfamiliar to you and someone that you might not trust from the start. And so I know from my experience when I [00:44:45] prioritized my mental health and sat down with a mental health care professional to talk about what I was going through, I remember this initial interaction being like, one of the scariest things ever.

I [00:45:00] remember it being intimidating, I remember feeling lonely, and ultimately I just remember feeling like I couldn't properly articulate and express what I was going through because I was so nervous to meet with this new, [00:45:15] fresh, unfamiliar face. So this is where I think that a care map, it doesn't have to be the plant care map example that I mentioned, but a care map that a youth individual has [00:45:30] curated for themselves can be extremely powerful because it gets that conversation started.

It breaks the ice. You can present that care map at the start of a session and that healthcare provider can then ask navigating [00:45:45] questions based off that care map. Ultimately, it could eliminate the barrier of having that youth individual have to start that conversation with the mental health care provider on their own, and it gives that mental health care [00:46:00] provider a way for them to start the conversation with that youth because they have that care map in their hands and they can ask questions based off the care map and based off what they're seeing on it.

Overall. This example of a care [00:46:15] map could be a powerful avenue to describe and not only describe but document what's going on mentally for the youth individual and ultimately break down barriers faced when tasked with [00:46:30] the situation of having to talk about and explain mentally youth's life. I also just want to highlight that documentation piece because I think for mental health care providers, having a care map that they can [00:46:45] look back on from maybe not every session, but most sessions with their youth clients, I think that that's incredibly useful for building out and carving a care plan for what that youth is experiencing and going [00:47:00] through.

It could be used as a way to track progress and track any changes, and then that mental health care provider can ultimately change or alter their care plan [00:47:15] for that youth based on their the care maps from session to session. Ultimately, I think using care maps in the context of navigating and interaction with a mental health care provider as a youth individual, [00:47:30] it gives youth their voice. It gives youth their voice to explain and articulate what they're going through.

As I wrap up this [00:47:45] episode on care mapping, let us all remember the fundamental principle at the heart of care mapping. That is the belief that every individual deserves to be seen, heard, and supported on their journey to health and well-being. 

Thank you all for joining us on this [00:48:00] MCH Bridges. The transcript of this episode can be found at www.mchbridges.org. Be sure to follow AMCHP on social media. We hope this episode created some new connections for you. Stay well, and I hope our paths cross [00:48:15] again on the next MCH Bridges.

Maura Leahy: This project is supported by the Health Resources and Services Administration, or HRSA, of the U.S. Department of [00:48:30] Health and Human Services, or HHS, as part of an award totaling $1,963,039, with 0 percent financed with non-governmental sources. This information or content and conclusions are those of the author [00:48:45] and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS, or the U.S. [00:49:00] government.