Systems

We are so excited to have you  joining us today as we talk about what that perfect system looks like for us. What we wish would have happened, what worked for us, and where we see opportunities to make the family journey better.

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Welcome to Linked Together a family center program. I'm so excited to have you along as we share our stories Thank you for joining us today as we talk about what that perfect system looks like for us. What we wish would have happened, what worked for us, and where we see opportunities to make the family journey better. So we've all been a part of a system, a system of care. And what I really want to talk to you guys today about is if you could design that perfect system, what would it look like? And I'll open it up. I'll let any of you guys start. Do you want to go? Yeah, I guess I'll start. What would the perfect system look like? Yeah. So this is if money was no object, you know, it is. We know resources are a can be a barrier and stuff like that. But but really, what what does that look like? What what would you have changed to have made better for someone, you know, like as a system, so not just as an individual, but really that's participating in that. So I know for me, when I think about the system approach and of course, I'm basing it off our experience. Sure. But but when I think about the system approach, I think about the opportunity to educate and and. Inform. Both practitioners and families on the experience of their family. So I know one of the challenges for us was it really started with the bedside manner. So as a system, I think there's an opportunity to help practitioners and specialists know how to more effectively communicate to families because it's more than just giving the information. It's really about approach and how you convey that information and being responsive to how a family responds as you're delivering the information. So that would be my first thing. Just just really figuring out a way that we can help practitioners and, and the folks who deliver that information know to look for cues or, you know, look for body language or whatever that may be is going to be different. Right. You know what I was going to ask? So, you know, every family is different, right? Everybody perceives different information differently. Everybody comes from a different space. So it's really like I do feel that some of that emotion gets stripped from sometimes providers. So that that's where I would ask you, like if you thought about that, like how did they respond? Because I do think sometimes they are in that difficult position of not knowing sometimes. Right. Yeah. I think, you know, I think I think that sometimes as a provider, I think their goal is to make sure you get the information and not so much how you receive the information. Right. Like they they want to make sure they've given it to you and that's it. It's not necessarily to me. It's not necessarily making sure you understand what you're being told. It's not, you know, always making sure you've comprehended what you've been told, what you've been told. But then too, I think a lot of times they miss very apparent opportunities to step back a second. And I'm again, just my experience full of tears and partially unclothed. That was an automatic. Let's take a break but that didn't happen for me. So. And so it will be different, I think, though. I mean and so I don't want to force you to tell your story if you don't want to, but I do think there's context in that as you like, you know, as we talk about this, right? Like how they didn't pick up on your cues and stuff like that. So if you wouldn't mind sharing that, I think that's a great story. Of how they were so intent on the information and not necessarily the person and how that person was receiving that news and processing that news and trying to like grasp what that look like. But again. That's up to you. Totally happy to share. Short version. You know, we were we were told at 22 weeks that Elijah, our unborn child, was diagnosed with Edward Syndrome, Trisomy 18, which is a rare condition. So we were on the table receiving the information. They were doing the ultrasound and partially unclothed. And I don't know why that's just so important to me to share but, but on the table of receiving the information and they basically just from head to toe told us everything that was happening and you know, he's missing three fourths of his brain, he's missing his esophagus is off line. The heart valve is not connected properly. So they're giving just from all the way down to his feet, rock bottom feet, clenched hands. And so it was just symptom after symptom diagnosis after diagnosis. And I was a mess. But the doctor continued to deliver information. And so for me, he missed the cue of me hyperventilating Which is pretty apparent! He missed that, he missed the apparent cue to just take a pause. My husband had to say, OK, so I got to cut you off for a second. Can you give her a minute to catch her breath. And have some compassion. And just a little compassion because because I respect the fact that he's giving me the information, but the approach of his delivery it could have been so much better. And so so that's for me, I think it's just it was just that it was a missed opportunity for him to say, help me better receive what he was what he was saying to me. Yeah, absolutely. And I honestly think that half dressed undressed comment is very important because again, anybody who's gone to the doctor and you're not in your clothes, that very vulnerable situation, and so you're already vulnerable and then they're giving you such hard information to process and try to understand. And you're, like I said, very vulnerable. And now you have no strength. So put your clothes back on. I mean, you know what I mean? Like, it's just this is literally I'm in a place now. I just want to lay here. I don't even want to move at like I have no strength now. Yeah. And and so for me, I would say, you know, just figuring out a way to help them see and understand that it's really important that you give that information we know that that's important, but just have a little empathy and recognize when patients are relaying to you, whether by word or body language, that they need a second or that's just that's just my perspective. Absolutely. Being in tune with the person at that moment, you know, meeting them where they are and and, you know, the vulnerability that you're experiencing naked yeah. You know, without your clothes on and receiving that information, it's just so important for providers to understand that to take a moment to to respond to be human you know, I think of systems in two different levels. I think of systems in the broad sense. And then on the personal level, on the real life, what happens, right? Systems are constructed. They're built by people to serve people, but they don't often include people. And they don't include the people that they're meant to serve. Yeah. And so there is a disconnect right there right from the top. So of course, it's going to be disconnected at the bottom when you're talking about patient centered practices or, you know, education and them working with you and your child, it's disconnected at the top right from the get go because they're not seeking that family input. They're not seeking those experiences. They're they're not looking at the vulnerability. So when I think of systems, I think of it as sort of like an organic thing, like the human body. You can't function properly if you don't have all of your limbs and all. Of your blood flowing. And your heart pumping, you know? So I think that they have to understand that everything is connected with systems from the top to the bottom and if the information isn't flowing well, if you're not meeting the family's needs, then the system isn't functioning correctly and it needs help. Yeah. So I was on the table twice in that very situation, receiving that information to children, two very different situations of of that. And my husband didn't wasn't with me at either time. And so I remember that you took me right back. Yeah. 30 years ago for the first time. But since then and then working through and having 15 different areas of health care that I was trying to manage all of the appointments, we were in multiple appointments a week or I was at multiple appointments a week for one child while the other one was in the hospital. It just all of that management. So the day that I became a mom, I became a care coordinator and a case manager I had to become a nurse to be able to care for my son. Even though I didn't have a nursing degree. I had to do all the testing from showing my competencies and take that off the door to our home and his bedroom. And so what I needed was a significant amount of help in that all of those systems of care coming together to help this one family survive and thrive. So care coordination, care coordination, and now it's something that wasn't even a term that I heard back then. But looking at our social determinants of what was going on in our life, did we need something beyond just the health care in order to meet the needs of our health? Did we have other needs as well going on from that greater whole family picture and whole person picture? And so if I could paint for all of our families, no matter what zip code they live in, no matter what health care they might have, I would be painting it, starting with help these families with clear, plain language where you are having true shared decision making with them and that they had that equitable care that they need for their family and that whole family care a true medical, not just home but medical neighborhood for them, that their needs are being met and that they are a part of it. They're not being told what to do. They are they are working together with our health care professionals to determine what is individually right for their family. Yeah. And I think that that requires the systems to be able to be adaptable, adaptable and understand the diversity of where our families are coming from and our children and their different needs, because every child is unique. Every child with Down syndrome, you know, every child that we have is unique for them and in themselves. Yeah. So I think that if I had to look at systems and think about what I would love to see is something that is really in tune with the family and and connected. So not just talking about medical here and education here, but really connected because you can't have a family be able to support their child fully and provide for them and emotionally, if they're stressed out about how to put food on the table, they don't even know. They don't understand, you know, what this diagnosis means. Their concerns are all over the place. And if you don't understand where that family is, then that's just going to make it more difficult, I think, for them to to really help that child succeed early on. Yeah. Yeah. So I was just going to throw in, too. I couldn't agree more with everything each of you said. For me, that piece that I would love to see as being part of a system of care is really that parent to parent support and really being part of that. Not sort of a after note of you got a diagnosis and oh, you wanted to connect with other families that to kind of learn what this might look like, but that there actually was part of a system of that, you know, and really if I was going to dream big, it would be like train parent leaders, right? So that they so that they did have some basic training and it wasn't just I don't know them kind of flying by the seat of their pants or whatever or agreeing to talk to someone but that they actually had some training and that there was those connections being made at some of those very, very early times. You know, as families are sort of starting to navigate and learn what those systems look like, whether it's all terms they'd never heard before, birth to three, early education, medical insurance, you know, like all of that. And again, trying to just having brought home a new baby and have that on top of all of that. So, yeah, I would build that that for me, that would be the piece that I would I would build in. Yeah. But I think that's a really great point because when you think about connecting families, connecting a family with another family, because there are so many flaws in our health care system when it comes to coordinating care and subspecialty services because like you, you know, 15 specialists for two babies, I can't even imagine juggling that for two. We have just Elijah, he has 18 and that's a handful. But to have to navigate that for two babies, I mean, it's just having that peer to peer family support a family, a family leader who's been trained a lot of times. If our health care space fails to mention a resource or fails to mention, you know, some information or education, that's a gap that a family leader could potentially fill. That's an opportunity for them to say, you know, have you heard about rehab services or have you heard about this solution program? That that a lot of times, I mean, just being realistically physicians don't think to mention those services sometimes they themselves don't know that they exist. And so you need those other folks to kind of help bridge the gap between that. And I think there's an honesty that a lot of times can come between parent to parent that you just you can ask somebody a question that maybe you were afraid to ask when you were in your physician's office. Right. Or your primary care provider, that that you're like, gosh, I just don't know what to do. They said, again, we should be doing this for, you know, I'll exaggerate 18 hours a day and right and right. I've got to get kids to baseball. And this isn't my only one. And I feel like I'm failing and and you can have somebody go, you know what? I've been there. It's an insurmountable task sometimes, but we do what we can do. And I just feel that that reassurance that comes sometimes is just you don't get that anywhere else. And I do want to say I so appreciate the job that our our health care professionals have for them. It's harder than it has ever been. And and and the acknowledgment that technically, if their following their requirements for insurance and the office standards and the clinical standards of giving us 12 minutes when we walk in the door but you know we're sorry our kids don't take 12 minutes our kids take far longer because you've got every system involved. And so it's just it's helping to figure out the value based pay system. Perhaps that might help ease some of that and there's a lot to be done. Yeah I think that's an excellent point Linda, because honestly I wanted to like bring that up. So like sometimes we always focus on like what would you fix or what would you change? But things worked well. You guys are all strong family leaders, do you know what I mean? So what part of that system worked for you? So for us, really our medical care went exactly the way it was supposed to. My kids were diagnosed exactly when they should have been. Like our medical care to me went pretty much under script we had a pediatrician that went, you know what, probably nothing. But let's do some testing just to make sure instead of blowing off our concerns at the time. So again, like I feel like that medical piece of it went really well for us. So is there a piece of that that, you know, again, I'm sure you've had your successes over the years and that there were parts that worked well. You know, so for me, stepping into my role as a family leader. Yeah. Is what worked well for me. OK, because we we we were being denied health care because of the high mortality rate of our diagnosis. The words "it's not worth the medical resources", was said to us. And so making the decision to dismiss that and say, you know, we need something different, you know, that that's not OK. And so step stepping into an authoritive place of family leadership and understand and at the time I didn't realize that that's what it was. I was just the mom, my husband just the dad, fighting for the life of our child. Like it wasn't about family leadership for me. It was about it was about letting a doctor know I get that this is the medical statistic. I get that this is the science, but he's alive. So we have to do something. And if you're not the doctor to do it, then lets... At least help me find one that will. And so so I feel my moment of empowerment or good experience it started when I recognize that I can I can say I don't like that plan. Let's talk about a new one. Let's talk about something different. Yeah. And that's what it boils down to, I think a lot is empowerment is feeling that. Wait a minute, I do have a say. It's not just people telling me what to do and I know how to think and how to, you know, handle my children what's what they need. I have a say in this, in their education, in their health. And that empowerment for me it was something that I struggled with initially. I felt like I just I didn't know what to do. I felt lost and I felt like I was relying on the health care system without realizing that I had choices to make for my child. So that took a little while for me. One of the things that helped me I think, was having that parent-to-parent perspective, being able to reach out and talk it through other people with other people who've been there made me feel like, OK, well, wait a minute, I do have some power here. I do have a say. So that that goes back with that, parent-to-parent, it's so important. And I think at least, I know I'm gonna let Linda speak... I think that leads to like that parent to parent empowerment. I think that's what leads to finding that good physician because we fought for years, but now we do have a really great medical team. Yeah. It it it took a long time to get there. It's a two hour commute one way from where we live. Yeah, but but we found, a group of doctors who who are willing to see us now. So but I think I think that parent-to-parent support or that leadership empowerment. I think that does help you find that system of care that you feel is is most beneficial for your family. Yeah. And to find physicians that are willing to step outside that medical role to then come together and say, you know what, I'm willing to come to an IEP meeting with you. This is a significant IEP, individual education plan, meeting with the school system because you have a child with such complex care. I'm going to take the time to do that. And being willing I think it was seen with our child as something is groundbreaking and an opportunity. I can tell you that there have been almost every doctor's appointment when it's a new physician, they would say, I don't know anything about this diagnosis. You're the expert in the room and having that acknowledgment that I knew what I was talking about, about my two kids, I might not know everything about Edwards syndrome, but I do know about Sotos syndrome and Congenital Bilateral Perisylvian Syndrome and being seen in that regard. It's important to to for that empowerment to and we were speaking earlier about this idea of divorcing a doctor and we did it with the very first pediatrician for our daughter because the the handling of the our very first appointment after coming home from the hospital and having a bumpy start, it didn't go well. And I walked out to the front desk and said, don't ever give us that doctor again. We will see any other pediatrician you have here, but not that one. And that's when I learned my strength of advocacy and that I had the right to do that. And it just went on from there. And and you grow with it. You grow with it as you move into each phase and how you are able to find ways to connect with physicians. They all have different personalities, and we do it in friendship circles and everything. We just work with the personalities until we realize maybe it's not the right match. Like you were saying earlier, Sarita. The other thing that I ended up doing was because I was that care manager, I started putting together my own summary of my child every week because it changed every week and it went to the nurses who were taking care of him and to the physicians who were taking care of him because there was no way they could all stay on the same page. But I was there 24/7. So yeah. Sure. That's a really good tip. Yeah. Yeah. You guys are such great change makers yourselves, right? So like, I'm so excited to learn more about how you guys are working, how you're changing systems, how you're modeling for other families and stuff like that. And as we continue to learn from each other and grow and, and hear everybody's stories, I think we will get to that maybe that utopian world a little bit sooner than we had hoped. Right. So thank you all for sharing your stories today. And I can't wait to the next time and we can learn some more. So thank you. Thanks. Thanks, Molly. The great conversations that we had today is supported by the Health Resources and Services Administration of the US Department of Health and Human Services. As part of the work of the National Genetics, Education and Family Support Program. The contents are those of the participants and do not necessarily represent the official views of, nor an endorsement by HRSA, HHS, or the US government.