Voiceover: This podcast is for informational and educational purposes only. It is not medical care or advice. Clinicians should rely on their own medical judgements when advising their patients. Patients in need of medical care should consult their personal care provider. Welcome to "That's Pediatrics", where we sit down with physicians, scientists, and experts to discuss the latest discoveries and innovations in pediatric healthcare.
Dr. Allison “Alli” Williams: I'm Alli Williams, one of the pediatric hospitalists here at UPMC Children's Hospital of Pittsburgh.
Dr. Sameer Agnihotri: I'm Sameer Agnihotri, one of the scientists here at Children's Hospital.
Dr. Williams: And today we are thrilled to be joined by Tomar Pierson-Brown. She is a lawyer that does some specialization in transition planning for youth with disabilities that starts as early as the age of 14.
Thank you so much for being here. I always love to start these podcasts with how did you come to the Pittsburgh area, well, both really, and this awesome job that you're doing here?
Tomar Pierson-Brown: I am a native Pittsburgher. I grew up in Penn Hills and I came back to Pittsburgh as an adult, because I got offered the job at Pitt Law. So Pitt Law was looking for a health law clinic, and health law is a broad, diverse field, it covers so many different things. My background is really in poverty law and legal services and child welfare, child advocacy, so I was a little bit not sure what to do when Pitt was interested in interviewing me for a health law clinic. I was like, "What do I do that's related to health?"
Dr. Williams: Right.
Ms. Pierson-Brown: But in my legal services career, both of the organizations that I worked for had medical-legal partnerships. So, medical-legal partnerships are collaborations between legal services organizations and hospitals meant to address the social determinants that bear on health outcomes for patients and patient families.
I went back to Pitt and I said, "Well, I'm not really a health lawyer by practice, but I could run a medical-legal partnership clinic that we could market as a health law clinic for your students." So I made the pitch, I contacted some folks at UPMC and I said, "Hey, we should be doing this and here's all the reasons why." So I was able to get UPMC on board, I got Pitt Law on board, and then I was hired to run the job, so I ran the clinic for eight years.
Dr. Agnihotri: Oh, amazing.
Dr. Williams: Oh my goodness. That is quite a career path and very novel of you to be like, "Well, I haven't done it before, but I know I can."
Ms. Pierson-Brown: Yeah.
Dr. Agnihotri: Right.
Dr. Williams: Which is awesome.
Ms. Pierson-Brown: I saw somebody else do it, so I was like, "Sure, I could totally do this."
Dr. Williams: That's amazing. One of the things you do with the medical-legal partnership is helped with transition planning. Is that correct?
Ms. Pierson-Brown: Yeah, so one of the things that we screen for when we do our legal needs screenings of patients and families is most of the patients that we work with at Children's probably have a diagnosis that would count as a disabling condition under the IDEA, which is the Individuals with Disabilities Education Act. It's the federal statute that provides for special education for students in public education.
So, we ask families, do you have an IEP? Are you happy with your IEP? How old is your youngster, your family member? When we know that the young person is 14 or approaching the age of 14, we'll ask, are you satisfied with your transition plan in your IEP? Has your school started transition planning? So, it's just an opportunity to introduce that conversation with caregivers.
Then if they are not satisfied with the school's IEP, then in some cases we're able to actually take on clients from the referrals that we get through Children's, and we can advocate for families at their IEP meetings.
Dr. Williams: So can you talk a little bit more for our listeners who don't know much about it, can you talk more about what transition planning is and what it actually means?
Dr. Agnihotri: Right.
Ms. Pierson-Brown: Yeah, so transition planning encompasses a broad umbrella of services, right? So we're talking about the transition from adolescence to adulthood, from secondary school to post-secondary education, and what does that look like? So for our medical team, for our medical providers, we might be thinking about the substantive care that a patient receives in pediatrics and maybe helping them to transition to an adult service provider, but there are a whole lot of social aspects to transition as well.
So when we were talking about IEPs, that's focused on not just the educational aspect of transition, but that could also be entry into workforce transition. What is this young person's capability and how do we make sure that they have as rich and full and complex a life as any adult human would want, not withstanding or not limiting our thinking about a young person's potential because maybe they have a particular diagnosis or a particular disabling condition?
So, that's one way of thinking about the big picture of transition. Then under the IDEA is a specific mandate for young people at the age of 14 to have a specific set of services listed in their IEP that's meant to support not only their transition into post-secondary options, but what does their independent living look like? What does their social supports and their family relationships look like? It's meant to be quite comprehensive.
Dr. Agnihotri: Just to elaborate on that a little bit, this is so important, how do you raise awareness and how do people get in contact with you?
Ms. Pierson-Brown: Okay, so I know that we're recording, so I'm going to give you my real answer, but then you might want to think about this. So the medical-legal partnership clinic, its last day is June 30th. So we've been doing this for eight years and we're actually shutting down, because I'm taking on a slightly different position within the law school, so don't contact me, but there are resources for parents to contact.
So, there are parent advocacy groups. The PEAL Center is a local parent group that has chapters all over the state of Pennsylvania that parents can get in contact with. If you Google legal services attorneys or special education lawyers, there's a lot of resources out there, but I think parent to parent empowerment is huge.
There are parents who have been through this with their own kids and now they're available to help parents that are going through the system now. Then certainly if things really do break down and you really do need some legal support, there are special education attorneys that can help families through this situation.
Dr. Agnihotri: Fantastic.
Dr. Williams: When should families start thinking about all of this for their children? Did I hear you say 14 earlier?
Ms. Pierson-Brown: Yeah, so under the IDEA, the transition planning process is supposed to begin at age 14. Certainly the Pennsylvania statutes require transition planning at age 14 as well, but there's language in both of those statutes that says or earlier if appropriate. So, one of the things that families can really think about is what do I see for my child in the future, and are there aspects of that that should wait until they turn 14?
Because it very well may be there's a lot of really outspoken tweenagers, like 12 and 13 that are beginning to come into their own in terms of their self-advocacy, their ability to say this is what I do and don't want. It wouldn't be unreasonable to start thinking about maybe doing a transition plan for a younger person who might need some support developing that self-advocacy strength or the core capacities associated with self-advocacy maybe even before 14, so that when they turn 14 and there's the mandate to do the planning, well, this young person already has some strengths in terms of saying this is what I do and don't want, and presenting their own case for why they want to follow one path as opposed to another.
So, you can think about within the context of a particular child's unique needs that maybe this is someone who could benefit from starting that transition process a little bit earlier, so that when they're 14 they're actually ready to really engage in a way that would be meaningful for them.
Dr. Agnihotri: Wow. So in terms of transition planning, is this unique here or do you talk to other people in other institutes to share ideas?
Ms. Pierson-Brown: So following the law is not unique, it's a federal law that's been interpreted by all of the states. So when we're doing our direct advocacy, that's kind of a universal thing, but one of the neat things about working with UPMC Children's Hospital is that we actually have a transition task force that's made up of a variety of pediatricians and care providers, people that are coming at this issue of adolescent transition into adulthood from a variety of different perspectives.
That has been a really exciting collaboration to be a part of, because I look at things with my law goggles on, but pediatricians are looking at things with their perspective and the social workers are looking at things from their perspectives. So it's nice to be in a room where people are really trying to think holistically about this process, because it is such a multidimensional process.
It's not just a developmental milestone from an acute care standpoint, it's a milestone in terms of, well, the law looks at you differently the day before you turn 18 and the morning when you wake up when you're 18, right?
Dr. Agnihotri: Right.
Ms. Pierson-Brown: So, it's really nice to work on the challenges associated with supporting young people in a multidisciplinary team.
Dr. Agnihotri: Wow.
Dr. Williams: This is probably a silly question, but is that one of the reasons why you start thinking about it so early? To me, 14 seems so early. I don't think I would've known what I wanted when I was 14, even as a child without any intellectual disability or medical diagnoses. But is it just that there's so many moving parts to it that you have to start thinking about this before that legal adulthood age?
Ms. Pierson-Brown: Yeah, it's that there's a lot of moving parts and I think a lot of coordination, and as the adults in the room we need to give ourselves time to think outside the box and plan, right? So, it can be really extreme to think about, well, what job am I going to have? Or where am I going to go to college when I'm 14? That's not necessarily a developmentally appropriate arc, but when you think about, well, what are the components of adulthood?
If the idea is that before you get your adult job, maybe you have a job in high school, well, then what skills does an eighth grader need so that when they get into high school and they decide they want to have a job, they're going to be able to pursue that?
It could be that this is a person who's going to really need some intensive support in filling out an application online for a job, because maybe they have some motor differences to where they can't use a standard keyboard, or they're going to have difficulty filling out a PDF, because maybe there's a visual impairment, or maybe they have a form of intellectual disability that they're going to need some coaching or support in filling out an online form.
But when you break it down into parts, we don't then want to wait until a young person is a junior ready to apply for that first teenage job. We might need to start thinking at eighth grade, ninth grade, what are the opportunities that we're giving this person to practice with this technology, so that when they want to fill out a fillable PDF, they're able to do it, right?
So it's that scaffolding, it's using all of our skills and resources and the perspective to break adulthood down into small parts, and then giving young people enough on-ramp to build up to the skills so that they're able to execute when the time does come.
Dr. Agnihotri: That's fantastic. Now, you said something about this multidisciplinarian team. Can you highlight why families would need legal counselor or a lawyer for this process and your expertise in that?
Ms. Tomar Pierson-Brown: Yeah, so I tell my students, "Nobody ever calls a lawyer because they're having a good day, right? When you call a lawyer, things have broken down, so you might need a lawyer when conversations with your school breakdown, right?" So, you can imagine being a really involved and invested parent and you have all these ideas, right? At some point, I want my son or daughter to be able to go to work independently, and to do that they're going to need to be able to take the bus.
Right now, my 10, 11, 12 year old, I go with them, but at some point, they're going to need to be able to go on their own. So, what I would really like is for the school to find some ways or some opportunities to teach my young person how to read a timetable, how to get to the right intersection, how to get on, how to pay, how to get off, and how to come back again.
So you go and your young person is 14, and it's like, we want to start working on this so that when they're 16, they can do it. The school says, "Oh, well, for our 14-year-olds, we just have guest speakers come in and talk about future careers." So that's great that you offer that, but that's not an individually tailored to my child's needs intervention. When you look at what the IDEA requires, what that special education statute requires, it's got to be narrowly tailored to the young person's needs.
So you might have some controversy, you might have some conflict with the school, because the school is going to feel like, "Hey, we've got limited resources, we're sort of bound to what we do, and really what's efficient for us is to do a one size fits all, all of our special need kids go to the assembly, they get the career presentation, and we can check off the box that we've started transition planning for that person," right?
This is the kind of conflict that emerges, so you might need a little bit of leverage, you might need a little bit of support in persuading your school to actually take the care that's needed to narrowly tailor the intervention to the student's needs, because that's what the statute requires.
I might ruffle some feathers by saying this. I want to also say that I acknowledge that our public schools are not well-supported, they are not well-funded, our teachers are not paid enough. I don't want to be that person who is down on the schools, because I understand that they also have constraints.
Dr. Williams: Right.
Ms. Pierson-Brown: What I try to do is help families negotiate and work with their school team to come up with solutions that are going to meet what the law requires within the unique context of your public school system.
So really, I think that it's not about getting a lawyer and going to the mattresses against your district, it's maybe getting somebody with a law background that can be an advocate that can help form a meeting of the minds between the parent and the school.
Dr. Agnihotri: Wow.
Dr. Williams: So, you had mentioned there's a transition task force here at UPMC Children's Hospital of Pittsburgh that talks all about these ideas and it's a multidisciplinary team. I guess the question I'm trying to ask, does that group exist in a clinic that a family would say, "I think I need help with this transition planning, do I go to this specific place?" Or is it that the pediatrician says, "We need to get you involved and we need a lawyer involved for your IEP."? How does it work when families start to realize I need help with this idea of transitioning?
Ms. Pierson-Brown: So to my understanding, the transition task force that is with UPMC Children's Hospital is internal, right? We're trying to, I think, as a collaboration think about how do we support our patients, right? What can we offer to the communities that we serve, right? I'm probably not the best spokesperson for the task force itself, I just get a chance to collaborate with those folks from time to time. But I think if parents recognize that they want to support their young person through transition, what are some things that they can do?
I think that successful families have connected with resources in their area that are going to support their young person. The Bureau of Vocational Resources can sometimes support families through transition, and a lot of times schools will have someone from BVR come to the IEP meeting and talk about what are the workforce development opportunities that are available in a particular area. But even if you don't have that connection, you don't even have to wait until that time.
I'm thinking of a family in particular that their son has really severe autism, but really sort of comes alive when he's working with animals. So they've done a couple of field trips to the horse farm, and really their son is really good with the horses, so they have gone back and developed a relationship. So, now he goes and he sort of mucks out the stalls, right?
So, then we were like, "Okay, well, let's go to the school district and say, hey, can we get this on his IEP? That his transition plan is that he's eventually going to have a more involved volunteer position when he graduates from high school, so what are the skills that he needs now? Well, he really needs help sorting, he really needs help following multi-step directions, so that when he goes he's actually able to do what's asked of him," right?
So, this was a family that was able to connect with a concrete resource in their area. They live in a rural part of Pennsylvania and they said, "Okay, this is the place, now let's bring it back to the school and work with the people who have the expertise from the school side to break that work into tasks and say, okay, this is something we can do with the occupational therapist, this is something that we can build into part of his school day is, all right, we're going to do some sorting tasks, we're going to really work on multi-step directions, so that when he goes back to the farm he can do one and two-step things," right?
That's the kind of synergy that represents transition planning, I think, at its best. What are the limitations of the student? What are the resources in the student's area? And then how can we work with the school team to translate that into skills that can be developed during the course of the school day and then parlayed back into the community?
Dr. Agnihotri: Wow. Just switching gears a little bit, how do you envision transition planning over the next year, five years, 10 years?
Ms. Pierson-Brown: Oh, that's such a great question. Okay, so a boring answer and then a more exciting answer. So the Office of Special Education, OSER, so the US Department of Education has recognized finally that transition planning really needs to be revamped across the country, that more resources need to be pulled into developing and empowering schools and families to really come up with transition planning that's going to be meaningful.
So I think in the future, I hope optimistically that through the grants that the government is providing to school districts and local community groups, that we'll begin to see some more innovative things. But I think what could be really exciting is if small businesses and nonprofits in the area really understood that there is a workforce development gap between what's happening in public education and young people on a range of disabilities that are entering the workforce.
We have this really outdated model of workforce development for people with special needs, and I think that special needs ends up becoming an umbrella that either becomes a shorthand for people that have intellectual disabilities or certain physical limitations, but we now recognize that there's a broad spectrum of difference. There's so much neurodivergence, there's so much physical divergence and a lot of our students can do so much with the right accommodation, I just think that there's a big gap between what is being taught and what the workforce needs to support diverse workers.
So, if we could really get some small businesses and some nonprofits excited about thinking about the young people in their community maybe entering that workforce and thinking about ways to connect students with orgs, then there could be this synergy between, okay, this is what we need, this is what we're teaching, and these are the students who are going to get exposed to it, so that we can really think creatively about supporting students.
When I was practicing in DC, we had this idea of doing a combine. You know how when they draft for the colleges, they have the football players do all the different things, right?
Dr. Williams: Yeah.
Dr. Agnihotri: Right, yeah.
Ms. Pierson-Brown: Well, what if we took students with a range of differences into some sort of a combine program where we're learning this skill, we're learning this skill, we're learning this skill, so that when they come out they ... because a resume, some high schoolers is not necessarily going to be appropriate for students with some difference, but if we could come up with a set of skills that they were able to develop in tandem with community while they were getting their secondary education, are we doing a better job of setting students up so they can maybe get matched or drafted into workforce opportunities that capitalize on their skills?
What's really needed are more systems. We have a couple of systems to support young people, but they can be really disparate and they only connect at certain junctures, and I feel like that's why so many young people, I think, sort of fall through the cracks to use an overused term. But if we had more systems, more dense systems, better systems to build young people's strengths in direct tandem with what the needs are given the local economy of where their neighborhood is, I think that we could see better and more successful transition outcomes for young people.
Dr. Agnihotri: Wow.
Dr. Williams: What does a successful transition end up looking like for a child?
Ms. Pierson-Brown: Yeah, so a successful transition can range from anything from going on to college and graduating to going into an independent living situation where they are still being supported in community, but maybe they don't have to live with mom and dad anymore, so they have some semblance of adulthood. It can mean going into a job where they're actually earning a wage and able to contribute to the economics of their family. There's a range of outcomes, it's so diverse. It's as diverse as our young people.
Again, I think what keeps young people and families from realizing those successful transitions is either poorly timed interventions, not the right kind of interventions, and families not knowing what support is available to make sure that they get the interventions and supports that their young person needs. Because there's this federal and state mandate for transition planning in schools and there's compulsory education where everybody goes to school, that's a really great place for this to happen. So schools need to be better supported, community providers need to be more integrated, community businesses need to be more integrated, and families just need to know what their resources are.
Dr. Williams: Your excitement for this topic and your passion for this topic exudes as you're talking about it, which I love and has been so interesting to listen to, and now I feel like I want to do more. I'm sure a lot of our listeners are probably feeling that way too, or feeling even more aware of the process, 'cause I don't even think this is something that I knew much about or thought about.
So towards the end of our podcast session here, I've heard you mention a couple different programs and places. Are there any websites that we could direct families to that you know about, or just mentioning those organizations to look out on again, just so that our listeners have those at the end to tidy up things so they can learn more information?
Ms. Pearson-Brown: Yeah, so I would encourage people to go to the PEAL Center website. It's P-E-A-L Center website. There's a national website, there's Pennsylvania website. Pennsylvania Disability Rights Network, Pennsylvania Parent Advocates, and I can send you maybe some more if you want to highlight at the end.
Dr. Williams: Yeah, that'd be perfect. We'll have the links under this podcast too for those that want to just click on the links if they're needing that information.
Thank you again so much for coming-
Dr. Agnihotri: Thank you so much.
Dr. Williams: And for talking to us about this and for sharing all of your knowledge about this topic, we truly appreciate you being here.
Ms. Pierson-Brown: Thank you.
Dr. Williams: Thanks for listening to That's Pediatrics.
Voiceover: You can find other episodes of That's Pediatrics on Apple Podcasts, Google Podcasts, Spotify, and YouTube. For more information about this podcast or our guests, please visit chp.edu/ThatsPediatrics. If you've enjoyed this episode, please be sure to rate, review and subscribe to keep up with our new content. You can also email us at podcast.upmc@gmail.com with any feedback or ideas for topics you'd like our experts to cover on future episodes. Thank you again for listening to, That's Pediatrics. Tune in next time.
Tomar Pierson-Brown, JD, LLM, is a clinical assistant professor of Law and director of the Health Law Clinic at UPMC Children’s Hospital of Pittsburgh. Under her leadership, the Health Law Clinic operates as a medical-legal partnership with UPMC Children’s Hospital of Pittsburgh.
