Disability & PFD

Episode 9 January 07, 2025 00:30:39
Disability & PFD
Feeding Does Matter
Disability & PFD

Jan 07 2025 | 00:30:39

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Hosted By

Jaclyn Pederson, MHI Dr. Hayley Estrem

Show Notes

In this episode of Feeding Does Matter, hosts Jaclyn Pederson and Dr. Hayley Estrem welcome Kelly Randall from Raising Special Kids to discuss the intersection of disability and pediatric feeding disorder (PFD). The conversation covers the history of the disability movement, the importance of early intervention, the role of IDEA, and the challenges families face in navigating services as their children transition to adulthood. The episode emphasizes the need for advocacy, awareness of available resources, and the recognition of feeding as a critical developmental domain.

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Episode Transcript

[00:00:00] Speaker A: When supporting a loved one with feeding differences, it's easy to feel like you are alone At Feeding Matters. Our hope is for you to find the community resources and support that you need through our Power of two Parent to Parent mentoring program. Parents in need of support are matched with our one of our volunteer family coaches who have lived experience with their own child and can offer emotional support, resources and guidance to lessen the isolation that families face with pediatric feeding disorder or PFD as well as avoidant restrictive food intake disorder or arfid. Families can request a one time phone call or a three month or six month match by filling out the request form on our website. A family coach will make contact via email first and then by phone or text message, typically within two to three days. For more information, please contact us at 623-242-5234, extension 306 or email@infoedimatters.org you are. [00:01:12] Speaker B: Not alone Presented by Feeding Matters with. [00:01:17] Speaker C: Host Jacqueline Peterson Dr. Haley Estrom Feeding. [00:01:24] Speaker D: Does Matter welcome to Feeding Does Matter. I'm Jacqueline Peterson with my co host Dr. Haley Estrom. We are still in our It's Not Picky Eating series, the series that launched this podcast and we have a very special guest today. So I'll let Healy introduce our guest today. Talk about disability and PFD through birth to 18. [00:01:51] Speaker B: Thank you Jacqueline. It's my pleasure to introduce to you all today Kelly Randall. She's with Raising Special Kids. It's a statewide nonprofit in Arizona and I'll hand it over to you Kelly. [00:02:06] Speaker C: Thank you. I know you're probably really busy and you're probably doing this in between all the other things that you have in your busy life. So I just want to thank you all for what you're doing for the future, this research and I just want to give you some encouragement and just let you know how much I think of you. So again, my name is Kelly Randall. I do work for Raising Special Kids. I have a 24 year old son with autism and epilepsy and also cognitive delay and he's what brought me to Raising Special Kids as a parent and also now as a staff member for 10 years. Our organization is a parent to parent training center and also a family to family health information center. So one learning objective is a history of the disability movement. I think this is important because legislation provides the funding and there is a lot of funding in the disability world, but a lot of that was because of parents parents, the movement, they said this is not right. And so just a few highlights. The 70s were a really big time in the disability movement. Before that, for example, say a family had a child born with a Down syndrome. The physician would say, well, you don't have the capacity and understanding to raise this child. They need to go to institution. And so every state had an institution, and a lot of these children went to an institution. And the what changed that was, if you've ever heard of Geraldo Rivera, he did an expose, and it was called Willowbrook. And if you look that up, they went inside Willowbrook, and it was horrific conditions. One aid to 50 people. These children and adults were. They didn't have clothing. It was a terrible smell. And so it really highlighted, you know, what was happening. And they were really marketed as hospitals and schools. And so with that, you know, that helped change the movement. So just to highlight a few federal laws that important to know about the disability movement. IDEA is the Individuals with Disability Education act. And that guaranteed the right of children to have an appropriate free education. Because before that, again, they went to institutions or they were at home. One in five children were only the ones that were educated. And so also with idea, it really is modeled on the parent. The parent should be the integral part of this team. And again, it's bringing the power of the parent to that Social Security act that has brought a lot of medical funds. And so for example, for Nathan, he has. And again, this is federal and every state is different. And so when you get into to this, they are available in your state, but they will look very different in your state. So if you start talking amongst each other, you might say, oh, this really looks different. And it's. It's because of the differences in the state. But so for. For Nathan, he does have through idea, he has an IEP plan and it helped with accommodations in the classroom, different classrooms. It allowed him to go to school actually to age 23. And Michigan, I think it's up to age age 26. And so that. That helped him. The Social Security act, part of that is medical funds, Medicaid funds. So here in Arizona, we're known as one of the most, the best for some of the services that we provide. But again, there's, there's. You have to qualify based on your. Your diagnosis, and there's a lot of different things onto that. [00:06:12] Speaker B: Kelly, could I ask a question? [00:06:13] Speaker C: Oh, yeah, absolutely. [00:06:15] Speaker B: With idea, you were emphasizing how it's the power of the parent. And I was just wondering, well, what happens in the situations when there's not parents, like what happens for the kids that are wards of the state. And that kind of thing, they do. [00:06:36] Speaker C: Have representatives that will sit in for that person. I'm not sure exactly what they're called, but there are representatives that would sit in and also foster care, they have those kind of things. So yeah, there is something in place for that. So again, states receive federal funding to develop a statewide program. And so just briefly, there's two parts. There's part C and, and D. So the, the part C is that states for that early intervention from birth to age three, there, there is coverage they, their parents. And again, there's, there's things to qualify, but they're based on milestones. But that would give that early education. [00:07:28] Speaker D: Maybe tell us a little bit deeper into early intervention. Okay, it sounds like that kind of the, the next step as we get further and further into idea. Ide. [00:07:39] Speaker C: Right, right. So the team model, again, this is the whole idea of idea is that a parent is an equal person at the table. And then as the child gets to be an adult, you know, they should be also included. They all should, all always should be included. But like at age 18, that child can actually take over if they don't have guardianship. They can be part of that IEP team instead of the parent. But it's basically a team model and it recognizes that. So in Arizona, it's a team model and it's based at home. They really look at the parents, their values, their goals, what the parent would like. A lot of the, well, the most of the evaluations are parent based. They're based on feedback from the parent. So is that, does that answer your question? [00:08:37] Speaker D: Yeah, I think it does. I think what's really interesting in the early intervention space is, you know, a lot of times we're talking about a family's definition of success and how we're thinking about that as it relates to where we want the research to go. But tell me if I'm wrong in this, but it sounds like the way that early intervention works is it does want to account for what a family's definition of success is and what are the areas that they want to focus on most? What are the areas in their home that they would like to see make the most change. And so I think that that's a really nice way to go. [00:09:20] Speaker B: I mean, if you don't mind me me saying, I mean, for early intervention, it's interesting because, you know, whereas for part B, the five and up, you know, when they're in school, they have the individual education plan, but for early intervention, you have the individual family service plan. Yes, and it's centered around the family making goals and the intervention being provided in the natural environment, which is home, whenever possible. And the family sets the goals, and goals are more habilitative and so on. [00:10:09] Speaker C: Right, Yep. And then there's a transition from that into the school. And another point is when families get to the school part, the school has evaluations and then there's a medical evaluation. So that gets families confused because they'll say, well, I have, you know, I have my records from the physician. But schools are required to do their own evaluations. And so that's important to know because it can be confusing. [00:10:41] Speaker D: Some of those screening tools. [00:10:42] Speaker C: Okay. Yes. Yes, thank you. The screening tools, some areas of concern. So they look at different areas. Physical, cognitive, language, communication, social, emotional and adaptive self help. So in my case of my, my son, cognitive delay, language, communication, social, emotional and adaptive self help. So he was covered in all of those areas. Then. Child find, I wanted to mention, because schools are required to look for children, if they see a child, they are to bring that to the attention. And so that's good to know because that's, that's their requirement. That's. That's what by law they are supposed to do. [00:11:26] Speaker D: So does that help support the awareness of, as a child is developing, if they are being, well, they're being screened in lots of other areas. But child find will also help preschool, maybe identify when a child needs a little bit more support. Would that be a way to characterize that, Kelly? [00:11:43] Speaker C: I think for me, in my lens, it might be more robust than that. But for me, just knowing that, because sometimes people, you know, you hear parents saying there's something wrong and the school is not acknowledging that. [00:11:58] Speaker D: Right. [00:11:58] Speaker C: And so to know that really it's their, when you get that resistance, it's really their charge. It's their responsibility to look into that. And so when there are barriers, sometimes we feel as parents. Wow. I'm really, you know, I'm really. Am I making all this up for nothing? And, and, but, but no, there's, there's ways to do this, and it is the way it's set up to do. [00:12:25] Speaker D: Yeah, no, I love that. So after preschool and they get into school age, as, as children tell us a little bit more about phase of, of early childhood development. [00:12:38] Speaker C: Yes, again. So a lot of this is, you know, pretty consistent. The physical, cognitive, language, social and adaptive. It kind of is, is the same areas. And then the IEP gets into 13 categories of disability. Another thing I wanted to point out, so I moved from Michigan, so I didn't know about early intervention. No one ever told me, though he was in the developmental preschool. And then when I moved to Arizona, I learned more about the Medicaid system that they have for people with disabilities. And again, it has to be you have to go through screening and go through all of that. It's called access in Arizona, but it's different in every state. And you might hear the term waiver. KATIE beckett Waiver and but these are Medicaid funds that federal funds, but they are available, so they do. You have to show that or the the child 50% delay in development area or two or more developmental areas. But. And if the two of you want to talk about where the the feeding comes in to that, I think that's. [00:13:59] Speaker D: One of the most interesting things that we're trying to bring better awareness to and maybe even potential legislation in the future is because feeding isn't really as well developed. It's not recognized as a developmental domain and it's not recognized as a standalone diagnosis in a lot of the different areas where you would qualify for different services. Because pediatric feeding disorder was built on the icf, so the International Classification of Function, Disability and Health, it does it's built within the diagnosis that it may lead to a disability. And that was intentional because of many families that are going through pfd, if that is their only diagnosis, it can get to being that challenging that it becomes characterized as a disability. But what we need to do further in our future is really build out the domain and recognize that in any childhood development, feeding is a domain because it is the foundation for a lot of other development. But then also on the disability side, making it a qualifying diagnosis is important as well, I think. And Hayley, you can jump in here too. Oftentimes, in a lot of the screening tools and areas of concern or assessments, feeding gets asked about. In some of these areas, some of it's like the can they feed themselves with a spoon? Is in the adaptive self help area or in language and communication, there may be a question or two about feeding. And then as we're looking at the delay in the developmental areas, it's a part of it. But so often it seems that feeding ends up being more clinical opinion based on the person who's doing the evaluation. I don't know, Haley, if you had other thoughts on that. [00:15:59] Speaker B: So my son, he had already qualified for early intervention and was in with those services, but qualifying for the Katie Beckett type waivers in our state in North Carolina, it was. So we were already on a wait list for the Developmental delay disability type waiver. But we have two waivers in our state, and there's another one for medically fragile children that I did not know about. I only had been informed about the. At the time, it was the Mr. D one. But that has now been changed to be called innovations because the Mr. Is now, you know, that's not a word we use anymore. So I didn't know that when he was given a feeding tube, that that meant, you know, that was something that required skilled care. And, you know, technically that meant that he could be institutionalized and he qualified for a community alternative program waiver. So Cap C, that's a community alternative program for children in North Carolina, and he immediately would have qualified for, and did qualify for the medically fragile children's Medicaid waiver in North Carolina. But we went for months trying to. [00:17:35] Speaker D: But you didn't know those. I'm sorry, you didn't. You didn't know that immediately. That wasn't. [00:17:40] Speaker B: No, we weren't told. We didn't know. And we went for months trying to get his supplies and everything paid for before figured out that he qualified for that. So, if anything, you know, like. So a better awareness of those waivers, I think, is something I would like to see come from this. Yeah. And like, better screening. [00:18:08] Speaker A: Better. [00:18:08] Speaker B: Yeah. [00:18:11] Speaker D: One of the main things we wanted to talk about with you as well, Kelly, was, as a child is growing up. What. What are some of those services or what's important for families to know about? I know we've heard it from so many of our families that it feels like this cliff that happens when a child maybe turns 18 and loses a lot of their services or. Or you as a family member go through it all again of not knowing what services are out there. [00:18:40] Speaker C: Right. And the whole thing is, is understanding systems and working with systems, and then they change. And 18 is a big. A big, big area. So, like, for us, we had to, at 18, look at those services, odd services again. And for us, it was. Since Nathan does have so many diagnosis, I think he qualifies for three. It was pretty. Pretty easy. But it can be, you know, you have to reapply again and see. Because really, the idea is that these programs will help that person become independent. And so it is a good chance to look and say, hey, does this person need these services again? And of course, in a perfect world, they wouldn't. Right. But it was determined. He still. Still did. So he still is getting those Medicaid services. And so as an adult, how that looks today is he is In a day program. And it pays for that day program after school. And he. Respite. I didn't mention respite. Respite's a big part of it because they recognize that families need that, need that break. So that really was some of the first parts of why they had this program. Nathan was able to go to camp that was paid for as part of the respite. And that was huge for him because this is the second year he went to camp. And I can just see the maturity because he's been, he's on his own. And it's just wonderful that they have a camp that's paid, you know, that's paid for through these things. So. And then SSI is something. So that. That also was through the Social Security act. So someone with documented disability can get, get income. And so he also is, is, has applied and, and at age 18 and he does get those funds as well. One thing that the vocational rehabilitation. And again this is available in every state. Vocational rehabilitation. The history of that was it was for people that came back from World War II and they, they needed that rehabilitation. Right, Because a lot of them were injured. And so now it is open also to people with disabilities. And so in our case, it's another. It's a state agency, but it actually works with the DDD system that Nathan had. And so they worked together. And there was actually a con contract that the high school had, so the VOC rehab would go in and work with him there too, and with the class. And so some ideas of that is how to write a resume, to interview, go to job placements. He had the opportunity to work, you know, go in and work at like a pizza place, Ace Hardware, and just to be able to see some things that helped, helped him. And so actually through the VR, another part of it is having a job coach. So he's. It's almost been a year now that he's had a job coach and he's been hired as a, a food worker. And so that job coach is paid for and they help him with everything that he needs with his job. I just wanted to say guardianship is at 18. I just want to point out there's also now a supported decision making. That's a big part of the movement. And now in Arizona that is also, instead of guardianship is supported decision making. Able accounts. They are accounts that. So a big thing with this is income cannot be less or cannot be more than $2,000 for a single person. So how are people supposed to get out of poverty, right? If you can only. And the income is for the, the medical, the, the Medicaid because that's also medical. And some, some of these, the waivers you have to have a income limit. And so this is a way for people to have financial, you know, have an account that can grow tax free and not lose those medical benefits. Some other things are transportation. Nathan is also able to, to take. Get some free or reduce subsidized transportation. So that would be like Uber and some different things like that. So those are other things. So I just want to encourage you and thank you for what you're doing because parents involvement and advocacy is really the key to systems change. [00:23:26] Speaker D: Thanks Kelly. That's such a great presentation to really just focus on all of the different available resources and how it looks at a different age and stage of a child's life. I think like you're saying so many times a family discovers resources and wasn't shared with. It wasn't shared with them originally on the meeting with their initial diagnosis. But I feel like resources almost feel like this underground network of information and like you don't know it's there and it's all these systems are interworking with each other until you sort of discover them and then you like slowly discover all of them which can be challenging to navigate. [00:24:10] Speaker C: So there's. Yeah, I work in different work groups and that's always the challenge is wonderful information but how to get it out. Yeah. And so I think the first step is that if you want to look up family to family health information center or parent information center, look that up in your state and it is free. It's non diagnosis specific. In our state we're under one roof but in other states they might be separate. But that's a good start to see what's available in your state and give them a call and see what they have. [00:24:48] Speaker D: Yeah, it could be helpful to have someone there to help learn about all of the different available options for you. [00:24:57] Speaker B: Was family to Family Voices started by Katie Beckett's mom or some of the people in that family. [00:25:07] Speaker C: They're all intertwined. They're all parents that wanted to make a change in the national level. Okay. Katie Beckett is. Well, she was one of the people that her, her child was in a hospital and they would not let you know the funds were at the hospital. We can take you but if you take her home, you're not going to have any support. And so she went to legislator and changed that. So she really was part of the. The movement. Right. And got it in other states so, yeah, she's definitely a giant in the, the history of that. And this one, you know, one parent saying, this is not right. Right. It's just amazing. And I have tears in my eyes because. Because of them. My. You look at my son, he's not in an institution. And so that's why I think of the things that you're doing today. Just think 20 years from now, what a parent won't have to do because of what you're doing. Yeah, it's. It's very humbling and exciting. [00:26:10] Speaker D: So. [00:26:10] Speaker B: Well, I mean, Shannon Goldwater and, and the people that started Feeding Matters, we, we're very grateful for all of that and thank you, Kelly, for everything that you do. I mean, yeah, it's amazing. [00:26:23] Speaker D: There's so many families in Arizona and then even being on this project, it is. We're truly grateful for being able to have you as a partner in this work with us. [00:26:34] Speaker C: Oh, my pleasure. I'm looking forward to seeing what all you're doing. [00:26:38] Speaker D: I'm excited. I'm excited to see, you know, what that our members have as the future of this, this work continues. [00:26:45] Speaker C: Because I think that's the biggest thing is, is, is creating it. Right. Like creating Feeding Matters and creating that vision and getting it. And, and that's the hard work. And so that's why I wanted to encourage you too, because at first I think it's all exciting and then you get to the really sludgy. Yeah. And it's slow, but there's progress. Right. And you have to just do all the steps and it can be exhausting ahead. Very medical complex child. And we're in a meeting and she said, why is it me? You know, I get up so early to change, you know, all equipment on my daughter. But you know, really, it's really the people that are impacted that make the change, demand the change because other people have other things going on, you know, and so it has to be us, really. But so I appreciate all the parents out there that are making that a. [00:27:43] Speaker D: Priority as we close out. Kelly, we have one last question, and it's just more of a thought provoking question as the Family Centered PFD Research Consortium goes on to fulfill kind of their initial aims, which are how can we build more research and research capacity to further this field and better support patients and families and individuals. And so the question is, what are some of the barriers to research in this area being family centered and do you have any ideas for solutions? And so for you, as a subject matter, experts in the individuals with disabilities area that could be pfd, but it could also be just in general thinking about disability as a whole. What are some barriers to research being family centered? [00:28:33] Speaker C: I think, I think and, and I see this working in a lot of different systems. I think the, the culture, there's just the medical culture, there's the culture of government and they're so different. They're. I mean, I love the non profit world because we really, really want to work together. And I think it's those societal. They're just built so different that they're not always working together, that they don't always put their egos aside for the betterment of everything. And so I think as a family leader, you kind of have to get just like anything else, advocate just, you know, hey, I want to learn more. Like I've been as part of some groups, hey, I don't understand this. Could we meet, you know, the person and this dad, I don't understand and just elevate you, you're, you're part of the, the, the fabric of it. And really there's a quote and I think it's Margaret Mead is that citizens are the people that, that make the change. It's really the only thing that ever has been. And so I think if we take that, that, that hey, this is not right and we have to do the hard work and not to get discouraged because no one else is going to do it. And so I think knowing that there's just a lot of systems, they're, they're not always efficient, but I think there are a lot of professionals that really want to make a difference and just hook on to them and, and just, just ride it out. So. [00:30:20] Speaker D: Yeah, that's, that's really beautiful. Kelly. Thank you for sharing and thank you so much again for your time today. We've really enjoyed this conversation. Bye, everyone.

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