The LEND Center and Family-Centered Care for Children with Developmental Disabilities with Dori Ortman

• Leadership Education in Neurodevelopmental Disabilities and Related Disorders | The University of Pittsburgh
• LEND Pittsburgh Facebook Page
• Community Living and Support Services (CLASS) Pittsburgh
• Maternal and Child Health Bureau
• Community PARTners | Pitt CTSI
• Achieva
• Open Up Pittsburgh
• The PEAL Center

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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. Amanda Poholek: Welcome to That's Pediatrics from UPMC Children's Hospital of Pittsburgh. I'm Amanda Poholek, Assistant Professor of Pediatrics and Immunology, your host for today. And today our guest is Dori Ortman. Dori serves as family faculty at LEND, which is the leadership education in neurodevelopmental disabilities of Pittsburgh, a program affiliated with the University of Pittsburgh and UPMC Children's Hospital of Pittsburgh. She is also LEND's Family and Self-Advocacy Training director and clinic coordinator. In addition to her roles at LEND, Dori is a crisis counselor with Crisis Trends and the Administrator of Special Needs Care, a private online group providing community advocacy resources and education to its members, which include parents, caregivers, siblings and other family members of children, adolescents, and young adults with special needs. Today our topic is the LEND Center and Family-Centered Care for Children with Developmental Disabilities. Thank you so much for being on our show, Dori.

Dori Ortman: Thank you so much for having me. I'm happy to be here.

Dr. Poholek: So I was hoping that you could start by just telling us a little bit about your background, your path to UPMC Children's and what drew you to your role working with the LEND Center.

Ms. Ortman: Absolutely. So way back in another lifetime, it feels like, I started off when I first entered college going for business marketing. But very long story short, in my trajectory, I've had a lot of personal experience with disability from a very early age, including an aunt who was deaf. My father eventually had a massive stroke and ended up in a wheelchair. So just a lot of personal experiences with disability. And I ended up being the program manager for an organization in Pittsburgh called CLASS, Community Living and Support Services, which is a nonprofit that serves families who have children with disabilities. I was in that role for 12 years working with families on a daily basis. I myself am also a mother of two now, young adults, at the time, they were young children and they both have learning differences and it just really made me sort of gravitate to that entire system, our nonprofit systems that do serve families who have children with disabilities.

Dr. Poholek: So that's your background. And so maybe you can tell us a little bit about how the LEND Center formed and how your role in the LEND Center got started.

Ms. Ortman: Absolutely. So LEND actually used to be known as UCLID, even when I first started. It started in 1995 and it was formed by community leaders and university leaders and UPMC Children's Hospital leaders as well. And UCLID was the name, is UCLID and that was University Community Leaders and Individuals with Disabilities. And so our university leaders, our hospital leaders really sort of gathered round and said we need to do a formalized program and unite all of us. The founder really of the program was Dr. Heidi Feldman, who was with UPMC for many years and has since left, but she's really considered a national renowned expert on autism and other neurodevelopmental disabilities. And so she started along again with the other community leaders and university leaders in 1995 to form UCLID, which later became LEND. And LEND is funded by the Maternal and Child Health Bureau.

So when we say it's affiliated with the University of Pittsburgh and UPMC Children's Hospital of Pittsburgh, our leadership has always come from and continues to come from UPMC Children's Hospital, university leaders. We sort of kept that cohort background really strong and continue to pull our leadership from there. So as I mentioned, we are funded by the Maternal and Child Health Bureau, MCHB. Well this is my 12th year with LEND as faculty. And so it would've been about 13 years ago, MCHB came out with a mandate. There are around, right now there are around 60 LEND programs across the country, all housed and affiliated with universities and hospitals. And we train a cohort of graduate and doctorate level students in a variety of disciplines who will eventually serve children who do have disabilities. So these are students from different disciplines like occupational therapy, physical therapy, speech therapy, social work, child psychology, so anyone that will serve all children, but certainly in our society today have children with disabilities come under their care.

So back to what I was saying about 13 years ago, MCHB came out with a mandate that just as graduate students and doctorate level students come to the table with a vast variety of experience and knowledge, lived wisdom, that families also come with that wisdom from their own pathway in raising a child with a disability or having a sibling with a disability. And so MCHB came out with the mandate that family had to be its own discipline within the LEND discipline programs across the country.

And so all of the LENDs started scrambling to identify family faculty, which was also sort of part of that mandate, so that we could get that curriculum developed and get that discipline basically as a part of our overall cohort. I was very honored that my name was sort of thrown into the hat by a few people right here at UPMC Children's Hospital as a recommendation for faculty and I interviewed and the rest is history. So this is my 12th year. Yeah.

Dr. Poholek: Awesome. That's fantastic. So the LEND program across the country is basically there to help train the individuals who are going to go out into the community in a variety of different settings and work with children with disabilities. And the family portion of that which you're involved in, the family faculty portion works with the families, together with these individuals who need training graduate students and doctors and things? Is that kind of how it works?

Ms. Ortman: That is part of my role. Absolutely. We actually have, just as we have trainees from the University of Pittsburgh, we also do have trainees from a couple of other universities nearby as well. But we have family trainees. Like this year I have two trainees who are both mothers of children with disabilities, very complex needs. And they are trainees alongside our graduate doctorate students. They act as peers. They follow not an identical curriculum because our student trainees have a lot of clinical experiences that they participate in. Whereas our family trainees are more consultants on those clinical experiences because they do bring that lived knowledge and wisdom with them.

The other part of our program that I'm very involved in is our clinic, and that is the biggest part that we're affiliated with UPMC Children's is that we have families who do have children with complex needs come for clinic appointments and then our trainees through LEND work with them, with our guidance, with faculty guidance and support and mentorship. But they do get to work directly with the families. We help identify resources for them within the community.

I would say our biggest role with families and our biggest support for families is that we help them navigate this complex system that we have for families raising children with disabilities. It can be a really complex system and really difficult to navigate and that's probably the biggest support that we offer through LEND and that our trainees get to offer.

Dr. Poholek: So what what's really fascinating to me about this is that it sounds like the LEND Center really is serving multiple communities at the same time, right?

Ms. Ortman: Absolutely.

Dr. Poholek: So on the one hand, you're serving the families that have these needs, that have children with disabilities that need all kinds of support as you just described. But it's also serving the people that are going to actually then go out into the world and work with those people as well as part of a leadership, a sort of an education training. So really interesting to me that you're sort of serving both roles at one time, helping families, helping patients, also helping train the people who need to go out there and help the families and help the patients outside of the LEND Center, really like a dual purpose. And that's incredibly interesting to me.

So how do you guys do the matching? How does a family get referred to the LEND Center? Or is that how that works? Or do you actively need to recruit individuals? Is there training programs that sort of automatically work with the LEND Center so that their students get involved in that program or is that also something that you need to recruit individuals for? I guess I'm kind of curious as to how you serve both purposes in training those communities and working with families at the same time and how it works almost on a day-to-day basis.

Ms. Ortman: Sure. Absolutely. And that's probably one of the biggest benefits of being a part of the system of UPMC Children's Hospital and then also the University of Pittsburgh for that sort of dual purpose because from the university, we do recruit our trainees. It's a very competitive process. We always have more applicants for our program than we are able to receive because we are a funded program. So we have very specific guidelines and even limitations as far as the number of trainees.

When we first started back in the day, as I said in 1995, our cohort of trainees was fairly small, maybe between six and 10. And we've certainly grown and now our cohort of trainees is usually around 20, 22. And so we've certainly grown, but we do always recruit from the university, from other nearby universities. Pittsburgh of course is a host of many wonderful universities. And so we're always trying to get the word out about that, but it is very competitive. They have to apply to the program, we interview and just depending on their leadership skills, we always say our goal, our purpose, our mission is we are training the next generation of leaders who will serve families who have children with disabilities and children with disabilities themselves. And so that's sort of our mission. And so yeah, we're always trying to put that word out there to recruit trainees or applicant trainees, let's just say.

Dr. Poholek: And I do want to come back to the family part of it.

Ms. Ortman: Absolutely.

Dr. Poholek: So for those of our listeners who are in the process of training, 'cause I think we do have quite a few listeners that are training for different varieties of care related to children, if you get into the program, how long is the program? Is it like a one-year stint or is it longer? What does that timeframe look like?

Ms. Ortman: Sure. It is a one academic year. So typically August through April. We're actually getting ready to graduate in a couple weeks. And so it is one academic year.

Dr. Poholek: Okay.

Ms. Ortman: It's pretty intense. And you're sort of adding this on as an option to your other really full course load basically, and looking for a job because you're getting ready to graduate. Unless you're a grad student and moving on to doctor. But many of even our graduate students are preparing to enter the workforce and so they're adding this on to their coursework. They're looking for a job, interviews, maybe accepting a job and starting. So it's pretty intensive. We do a lot of different activities and projects and academics with them. And so [inaudible 00:13:42]

Dr. Poholek: What defines successful completion? What are the key skills that someone would learn during that training process? Are there different subset programs within, like you had said, you had 20 to 22 trainees per year, do they each undergo the exact same type of training or is it distinct depending on what environment they're coming from, whether it's occupational therapy or physical therapy, et cetera?

Ms. Ortman: Actually, we always say when you walk through the door and LEND, if you're accepted and you're a trainee, when you walk through the door at LEND, the first thing you need to do is take off your discipline hat because you will probably very rarely be speaking or doing activities related to your discipline. We really want them to think more outside the box and how can we look at this family holistically and what kinds of resources might help them. So even if you are just using your example as an occupational therapist and eventually this student will become an OT and be working with children, when you're working with that child, there are a lot of other things that you might end up seeing that could be really beneficial for them or really helpful and supportive for the family. And if you're able to provide resources to them and suggestions to them on those other areas, your plan and your goals with that child, even in OT, will be so much more successful.

We try to teach our trainees to not just think of healthcare, but to also think of sort of WellCare, which there are a lot of things that go into overall wellness that we know of course, socialization, recreation opportunities being a part of the community. And a lot of children with disabilities don't have the same types of opportunities with those types of things as other children. And so we really look at that. Does the child have friends? Is the child involved in any programs? Are they getting out there or are they isolated? Which happens to a lot of families as well, not just the children themselves, but the families because sometimes it's hard to take your child with a disability out and people staring or maybe your child has an outburst in a restaurant. And a lot of families more than people realize, sort of isolate themselves. And that's not wellbeing for the child. That doesn't relate to overall healthcare. And we want that. We want it to be recognized as a holistic approach.

And so, yeah, they really do follow this same curriculum, the same projects and activities and leadership skills. It doesn't really depend on their discipline. The only variance I would say is that our family trainees have a very parallel curriculum with a little bit of difference based on goals that they want to achieve afterwards.

Dr. Poholek: So I guess this is a good transition point to get back to the family portion of things. So how do you identify families that are appropriate for the LEND Center? And then can you tell us a little about exactly what you were just saying at the end there about how the families trainees then go through their process? How do they identify what their goals are and then how long is that program? Is it also a year and how does that process work?

Ms. Ortman: Absolutely. So our families, we're very fortunate, referrals for our families, for our clinic mostly come from UPMC Children's, to be honest. A lot of the different departments that end up working and we have a lot of great clinics within our hospital system as well. We have a CP clinic for cerebral palsy. We have various autism programs, a lot of different clinics and programs. And so we get a lot of referrals from UPMC Children's. We get child, excuse me, we get referrals from pediatricians who are aware of us. We always take the summer to make sure all of the different departments and healthcare systems remember who we are. We're fortunate that we don't really have to make a huge push for families. We usually serve because it is part of a training program. It's not really an appointment, like a healthcare appointment that families would maybe receive coming to a different type of clinic.

Our clinic is a little bit different in that it's more like community based and about community resources and like I had said earlier, helping families navigate systems. So it's not really healthcare based as in we are not doing an exam and things like that. And so other clinics and pediatricians and those who are aware of us typically refer families to us who are having difficulty not only with navigating the system, but a lot of our families come to us with issues with school systems, just trying to better their communication with school systems, maybe needing some support with their child's IEP or individualized education plan, which all children with disabilities have.

And so they're coming to us for resources and support and things almost outside of the realm of what the typical healthcare system does. But again, because it is a training program, our appointments are limited, so we usually serve around 20 families per year. So it's not something that we necessarily are having to knock down doors. We're getting the referrals. We're very fortunate. We look at what the family's needs are, what their goals are, what our students are working on and sort of go from there.

Dr. Poholek: And are you essentially able to take every family that is referred to you or is there a wait list in order to get into the program?

Ms. Ortman: There's not a wait list at this time. We sometimes do have one once the year gets started. Sometimes families will come back to us a second year depending again on what their goals were and maybe our trainees who are on that team for that family, we do have clinic teams, feel that the family would really benefit from some fluidity as far as continuing to work on those goals into the coming academic year or school year for the child. And so we'll bring them back in the fall. So it just depends. We don't have a wait list typically, but sometimes once the year actually gets started rolling into September, October, we may sometimes have a wait list, but we're typically able to see all of our families over the course of the year.

Dr. Poholek: Great. That's fantastic. So I wanted to also come back to at the beginning of your introduction, talking about how, you had a lot of personal experiences with disabilities in your family and how that really, I mean, I think it's so great that you were able to then move into a career where that clear passion that you have and that experience that you have was able to be leveraged in this incredibly important and positive way. And given the amount of time that you've been in this career path, I'm really just sort of curious how caring for children with disabilities has changed over time. What kinds of things have you seen more recently that have played a positive role in how we think about and care for children with disabilities and maybe some sort of emerging areas that you think are still needing to be addressed and why we haven't been able to address them yet?

Ms. Ortman:Absolutely. So while overall healthcare I don't think has necessarily changed for families with children with disabilities and the children themselves, I think what has changed is navigating that complex system, which I had mentioned earlier, I think has become more and more complex for our families. We've seen a lot of shifts in mental health, behavioral health issues. There are many vulnerable families. We see a lot of grandparents caring for their grandchildren who have disabilities and having full custody. I think there's just so many stressors on the collective systems, including the healthcare system, the educational system. I had mentioned school being a big issue. And so I think there's a lot of stressors short of... Well, some of those things have changed overall. What definitely has not changed is the amount of support that families need and that we should be giving them.

Two areas that we are really focusing on right now through our LEND program, are health equity for those more vulnerable families, something that I know we're all striving for when it comes to children's with disabilities, we really want to make sure, they are more vulnerable, we really want to make sure they're being supported. We really want to make sure that their families are able to navigate these systems.

And then another area that we're really looking at is reaching out to rural families or families living in rural areas who have children with disabilities because the resources that are available to them are very, very limited. And so now that we have been through this pandemic and still living within it, I guess in some way, and we've all sort of gotten more up to speed on Zoom meetings and appointments and things like that, I think that that really gives all of us an opportunity to really think about how we can better serve families in rural areas.

Now that we on our side are sort of more up to speed on all of these virtual possibilities of support, how can we help them, because some of them don't have internet service, some of them don't have a computer to use or something, but how can we help them get some of this so that we can then support them more when they are so isolated and in enroll communities? As I was saying earlier about that sort of overall wellness and socialization. When you're in a rural area and barely have any resources available to you, that only makes it only more challenging for effective healthcare and overall wellness.

Dr. Poholek: Yeah. What kind of additional resources do you feel like the LEND Center needs or could use that would help with some of those goals, reaching out to rural families? What are the challenges in being able to meet those goals at this point?

Ms. Ortman: Well, because we are a grant funded program and we do have to renew, I mean we're very thankful, we have been around since 1995, but every five years we do go through a competitive grant renewal with all other LENDs across the country, but then also new programs that a university or hospital that say, "We want to have a LEND." And so now they're submitting an initial application to the Maternal and Child Health Bureau. So every five years we go through a very competitive renewal.

So all of the support that we can get from the community, we often ask community leaders for letters of support when we do submit our grant renewals and just really even this helping us put the word out about LEND and what we're doing and for the community and region really to be aware of that and for us to just have that recognition so that we can get support, that when we do reach out to different nonprofits or resources that we're hoping can help these families, that people are more aware of what LEND is and what LEND does and wanting to rally around us and support us in our missions so that we can then continue receiving that funding from MCHB and continue with our mission as well.

Dr. Poholek: Fantastic. Yeah. I guess in closing, maybe we could just... I was wondering if you could comment a little bit on some of the really critical partners that you have here in the community currently, and are there any additional partners that you think would further benefit having that kind of support?

Ms. Ortman: Some of the projects that we have our trainees work on, one is State Your Case, and that is that they research laws and regulations around a particular disability topic, and then they create an advocacy message to share with the community. With our local legislators. We have our two family trainees actually next week are going down to Washington DC and meeting with legislators on the Hill. They're having Hill visits. And so we're always out there trying to advocate, advocate, advocate. And so we have partners that help us with State Your Case. We're always looking for different mentors within the community who are community leaders who somehow have a stake in serving children with disabilities and their families. And so we have a lot of great individual mentors that, I don't even want to mention names because I'll forget someone and I don't want to forget to do that, is called another one of our projects that our trainees work on is called Community Partners.

And that allows them to work with a nonprofit organization in our community who is already serving children with disabilities, and they work on a project the entire year with that partner. And it really allows them to see the challenges of not only nonprofits with raising funds, and these are nonprofits that sometimes hold big fundraisers and galas, and that can be really challenging, but it's, where do we find this money to serve the kids? And that allows them to get that firsthand experience of those challenges and then just really get to know some of the leading organizations in the community. So we do have a lot that we work with and that we are so happy that they are partnered with us.

Just some that I'll mention right now, Achieva, we work with a lot, Open Up Pittsburgh, that's a newer community organization that offers yoga and improv classes in an inclusive setting, so it's children and adults without disabilities, but then also they're very welcoming of a variety. They do outreach to all different types of underserved populations, minorities, disability, LGBTQ, and so those are things that we're always passionate about. When we think about inclusion, we think about the entire community, and disability is within that. And so Open Up Pittsburgh is another one that's fairly new, that is a community partner.

The PEAL Center. We have just so many great organizations in our area that serve children with disabilities, but of course, we're always looking for support. I would just say really any organization that does serve children with disabilities, if they're interested in becoming a partner with us or the potential to become a partner with us to reach out to us, we would love to talk to them. If they're interested in being a part of training this next generation of leaders, and maybe that's something they're interested in, again, reach out to us. We would love to talk to them. But yeah, we're always looking for organizations within the community to partner with us to help further advance our mission.

Dr. Poholek: Fantastic. Well, thank you so much for your time today, Dori. I mean, I just also want to take a moment and thank you for the work that you do serving families and children with disabilities. It's such an important part of the work here at UPMC Children's, and we're so grateful to have the organization, the LEND Center, and you and your colleagues to participate in that. And thank you for your time today to share with us your experience and the information about the LEND Center.

Ms. Ortman: Thank you so much. Thank you for having me. On behalf of our entire LEND Center and our entire faculty group, we are so happy to be affiliated with UPMC Children's Hospital and of course University of Pittsburgh where we're housed. And yeah, thank you for having me on and hearing about LEND.

Dr. Poholek: Great. Thanks.

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