Good morning. This is Disability Justice: An Everyday Pursuit in Survival. Your host, John Griffiths and Dena Wilder, board operator.
JG: Would you mind giving us your name and title?
BS: Sure. So my name is Bethany Sloan. I am a pediatric physical therapist, at Oregon Health and Science University, and I am a training coordinator for the LEND program at OHSU, which stands for leadership, education, and neuro developmental and related disabilities.
And it's a training program that we will talk more about.
JG: Oh, good welcome, Bentley Sloan! It's good to have you in the studio today.
BS: Good to be here
JG: Even though we're not really in the studio.
BS: No. (Laughter)
JG: Alright, so I guess the first question is at like, What is the LEND program?
BS: Yeah. So the LEND program provides training to individuals from like a variety of health care disciplines, or just in other areas as well.
So thinking about how health care disciplines that could be people that have just finished physical therapy school or occupational therapy, speech language pathologists, psychologists, doctors, nurses, nutritionists,
audiologists who like test your hearing. I'm trying to think... social work.
And then we have other disciplines involved, such as the family trainee, who is a person who has a family member who has a disability or we also have a self advocate trainee, which is a person who has a lived experience of a disability, that is involved with our cohort so
The training is really these professionals all come together to learn about neuro developmental and related disabilities, how to care for children in a health care setting.
And also, this program really looks at building like leadership skills, advocacy skills, knowledge in these disability areas that we're talking about plus all coming together as a group.
Let's call interdisciplinary care where all these professionals are coming together and working together as a group to provide better care to the patients and families we serve at our organization.
JG: How long has the LEND program been going on for?
BS: I know that the LEND program has been around for quite a long period of time.
It grew out of like the so like LEND programs in general are a national, a national program.
So there's generally one in every State. Currently, there's 52 LEND programs across the country, and all the LEND programs grew from the 1950's efforts of the Child Children's Bureau, which is now like the Maternal and Child Health Bureau and that they
grew, to identify children with disabilities as like a Title 5 Program priority. So the LEND programs in general have been around since, like for for probably like going on like 40 years or more.
JG: Oh, long time.
BS: It has been around for a long time. Yes.
JG: Why, it's just kind of curious, why it took me so long for me to hear about it?
BS: Well, I think what's interesting about that is that just in the past 2 years is when we started to add the self advocate discipline to the LEND program.
And so that's how we got connected is because we were recruiting for that position.
And so the advocate has not always been a discipline within the LEND program, and that's a new new discipline that the LEND programs are starting to to prioritize making sure that there's somebody with lived experience in our cohort so that way that the
cohorts, also learning from parents of people with disabilities, and people with disabilities themselves, to really make sure we're engaging and providing the best care for health care for children and families
JG: So how many cohorts are you having in this program every year?
BS: So there's one cohort and the program lasts for an entire year. Some some disciplines are there for a 9 month, 9 months length, and some are there for an entire year.
So it's one cohort for the entire year.
JG: And what is the ultimate goal of all that?
BS:To provide the best care for children with developmental and neuro developmental disabilities.
JG: Okay. And I I am aware that you also have something like some kind of training program where you accept a certain amount of students or or have advocates, self advocates.
You go through like 10 months of training, or something like that?
BS: Yeah, so.
JG: And then get a certain kind of pay and education?
BS: Yeah. So it's all the same program. So the LEND program has all these different professionals that are involved in it.
And they're all going through training. So sometimes the LEND program is part of like a more extensive training program.
So like I mentioned. I'm the physical therapy training director.
So I'm a physical therapist, and our physical therapy trainee is part of a larger residency program.
So the Residency program is when this person would get a but a lot of training in very specialty areas of physical therapy.
And so they are involved in our clinical programs. They go to different community settings and learn all about physical therapy.
And so the lend program as a part of their training program of their year-long training program, where they maybe have, like a whole day, or generally like several hours a week that's dedicated to lend.
And then there's some trainees that only do the LEND program like the Self Advocate trainee and the family trainee, where they generally have about 16 h a week.
That is devoted directly to the LEND training program, and so what like training consists of is that once a week they do a...
They have a meeting time with their entire cohort that's called the Interdisciplinary Seminar, and that can be a time where maybe there's a lecture or a guest is coming to provide a presentation.
They can connect about different cases or specific patients that that they've seen during their clinical time.
They can learn about, like right now, the past 2 seminars have been around advocacy and how to move like a bill into a law, or how to create a bill around like advocacy efforts in Oregon and so it's just like this 2 hour time to connect about a lot of different
Things like I said they could learn about a specific disability.
They could learn about advocacy. They could learn about leadership skills.
Yeah, there's a whole slew of different topics that they they go over.
But then other parts of the LEND program training are as a family mentorship program, where each trainee gets connected with a family member who has a child with a disability, and they just go in there learning from that family so they might go to that person's home or to a therapy appointment
or a doctor's appointment, and or maybe like a community activity that they're going to.
And really they're just there to like learn from the family and learn from that experience.
It's not necessarily that they're going to provide care, you know, if they're a physical therapist or a doctor or something, but they're more just going and observing and learning from that family's experience.
personal experience. There's 2 other components to the LEND training program.
The next one is research. So each person, each trainee that's a part of the LEND program is involved in a research project.
So that again can be like a continuum of a project so they can look like a lot of different things.
So some trainees might are doing like a projects related to their specific field, like physical therapy or social work, or it could be like a quality improvement project.
Related to something that's going on in our clinical programs.
So there's a research project. And then the last project is the community engagement and Leadership Project, where each trainee gets connected with a community program.
And so some of our community programs are like PHAME, like a a performing art school for people with disabilities.
I think there's a specific school that is involved with that program.
With our program. Gosh, I'm trying to think of some of the other ones off the top of my head.
They a bunch just change this year. So I'm kind of blinking.
But anyways they get connected with a community program, and they are working in conjunction with that community program to really define maybe what that program needs help on.
And can coordinate some sort of project for the trainees to work on.
So an example is that PHAME is really wanting to move more into like a hybrid model of opening, like having in person classes and zoom like virtual classes, and so they're wanting some help about making sure that both of those areas are like accessible and really just figuring
Out. Even just like what type of equipment's needed.
And kind of just doing an overview of like what would be needed in order to move into more of a hybrid model.
So our trainees are really helping PHAME look at that.
So those are like some of the training areas that the LEND programs really focused on.
And I guess the last one that I'll mention is that generally each trainee has some sort of clinical clinical involvement clinical project, so you know, we're up here at OHSU.
So we're part of the Children's Hospital and there's a lot of different clinics that are going on at that
Children's Hospital. So each trainee kind of has, like a role within that, within a clinical, within a clinic.
So those are the components of the of the LEND program, and they really look different, based off of each trainee.
What their background is like? Are they a physical therapist?
Are they a social worker? Are they an advocate?
And it also really changes too based on what is each trainee's goals, you know, like someone might come in and be really interested in working in a specific clinic, maybe with like the down syndrome population, or someone, maybe really interested in working
With children who have autism. And so it can really be a pretty tailored to to what people's interests are as well.
JG: So what is your role within the LEND program?
BS: So I am the physical therapy training coordinator.
So I I well, I'm the Co-ordinator.
There's 2 of us, there's 2 of us that run the physical therapy physical Therapy Residency program.
And so I'm mostly responsible for that specific trainee and their training experience.
But within the LEND program as well, we have specific committees that each of us are a part of each of the like faculty are a part of and I sit on the research committee.
So I, the research project that I mentioned that each trainee is responsible for.
I help review each of those projects as they're starting to come together, provide feedback, provide other resources, connect trainees with maybe people that could be helpful and just make sure that each trainee is on the right track related to their research project.
So I'm kind of there to help in the research area.
And I also wanted to say that I'm also a past LEND trainee.
So I went through the trainee. The lend program in 2014.
So I was the pediatric, Or the physical therapy LEND trainee in 2014.
So I'm also a past trainee which is really helpful to being now a faculty member on there.
JG: And then when, if you were to accept a self-advocate who has an intellect disability, are they getting some kind of certificate out of this? Or are they moving from the LEND program? and I'm talking about just the self-advocates, not any of the other disciplines you mentioned. Just self-advocates themselves. Now, I'm kind of like wondering, are they moving from your training onto something in the medical field or
are they moving to something to different? Do they get some kind of certificate, degree, what is the ultimate end result for a self-advocate going through the LEND program?
BS: Yeah, so there isn't any sort of like... there is a certificate of completition of the LEND program. Definitely. That is something that would be received. We give every person that finishes the LEND program a certificate that they've completed it.
But it's not for like a credit, you know, like school credit, or like like a college credit, or anything like that.
It's more of just like a certificate of completion and we've only had 2 self advocates now in our program.
So next year we'll be recruiting for our third.
And really, what happens like where the advocate would go after that is really dependent on what that advocates goals are, and where they want to do.
So, but I would say that a generally advocates are more so.
Looking at positions related to maybe working for like a nonprofit that that works with people with disabilities, or some sort of advocacy position, or being on a different, like a committee where they could continue to provide like advocacy or or their experience with like a specific
committee related to working with people, with disabilities. So it can really be a lot of different, a lot of different areas where people might move into after the LEND program related to advocates that I think is really individual to what the person is after and what they're wanting to go into and I think that's what
makes the program really interesting, too, is, it's like what the person, what the advocate goals are coming in,
we can help connect them with that. So like, if they are interested in, maybe an advocacy position, maybe they're going to
we would help connect them with different advocacy groups that are local or in Oregon, to help to help develop some of their experience in those areas
JG: So what is the ultimate future of the LEND? program?
I mean, where's where's it going to eventually wind up
BS: Yeah, well, I mean, like, I said, it's been
It's been around for a long period of time, and I guess the future is that we want it to continue because the LEND program is a federally funded program.
And so we are definitely relying on continuing to get like our grant renewed.
So we definitely want to that I mean, the future is that we hope that it continues on (laughter) and you know it's better out for a while.
So I think that hopefully, that is likely. But you know, I think that we are really wanting to continue to
Continue to be inclusive of people with disabilities within the LEND program, as well.
So and that's something that we're moving more and more into every year of like having people with the disabilities providing education, collaborating with healthcare professionals and which is really needed to continue to advance health care and receiving feedback and about opinions from people with disabilities about
How do they want their health care to be? And continuing to collaborate collaborate on that initiative.
So that's where I hope to see the LEND program just nationally continue to go is to continue to move out of such a medical model of of health care and continue to move into that social model of health care.
So that's where I hope to see the future of LEND, and I guess also, like the future of health care.
JG: I was also wondering you know you've spoken about having advocates and in helping with the education and everything.
I was wondering, is there ever going to be a point of where you might also be, including the caregivers, as they are an integral part of people with disabilities who have to rely on a caregiver quite frequently
BS: Yeah, so caregivers are definitely, very involved as well.
So like. I mentioned one of our trainees is of family trainee, which means that they are a caregiver for a person with a disability.
And so they really bring that perspective into the LEND program.
And we do like regarding the education in different sessions that we have in LEND . Like educational sessions, we definitely have caregivers also present for for those to to provide their experience
JG: Good, good, good, good.
BS: Yeah, yes, because especially working with children. Like I said, we're really specializing, like pediatric care that you know the family is such an integral part to to that
JG: Thank you. I was wondering. Are there any other advocacy opportunities, you know, other than the program that you just described?
I guess, within our elsewhere any other. Are there any other advocacy efforts we should be aware of?
BS: Yeah. So I was gonna mention, we kind of have like a a partner organization to lend that's called like the university centers for excellence and developmental disabilities.
And that sort of gets shortened to an acronym called the UCEDD, and they are also like up at Ohsu, and are very and are very involved in similar work, and they have one of the things I was gonna mention is that they have a community partners council that serves as a like an
Advisory group for the UCEDD, and it is generally they generally recruit people who experience a disability have a family member with a disability or have an interest in supporting people with disabilities and their families as members, and so that is definitely something to look into and here I was just
gonna provide about like, yeah. So like, the UCEDD states on their website that it's an organization that supports people with disabilities, with their mission to promote the health and quality of life of Oregonians, with disabilities and their families across the lifespan we accomplish this through
leadership and collaboration with local, State and national partners, serving as a resource for excellence in education, research, evaluation, community outreach service and information sharing.
So, yeah, so that would be an organization to look into some more.
So that UCEDD, and their community partners council.
JG: Alright! Thank you. And you know people are going to. I think you're gonna get some interest, or at least I hope you get some interest in this.
And people are definitely going to want some contact information like, you know, contacting the LEND program.
And you know, maybe figure it out how they can participate or
whether or not it's for them, or something else like that.
JG: So do you have any like, I guess, email address, phone numbers, things like that?
BS: Yes, so I would say, if people are interested in the LEND program, if you're interested, on OHSU
There is a website. If you just type in like OHSU LEND program, it should pop up.
And then on that website, there is. So it's really the website is www.ohsu.edu backslash lend.
So lend is the website. And on that website it
It provides like contact information. So our lend project coordinator name is Nicole,
for more information
JG: Okay. Thank you.
BS: Yeah, the LEND program this year goes until May, and then we are starting like we'll be restarting we will be starting recruitment for our next cohort.
Probably you know around like May into the summer so this is a good time, because if people are interested, we're gonna be starting recruitment sometimes, like in the mid year.
So if people are interested, that would be something to look out for.
JG: Alright. You know what I would like to thank you for coming into the studio and doing the interview with us.
It's always great to, you know. Get as much information as we can out across the air.
Hopefully, we're actually reaching out and giving people valuable information that will help them in their everyday pursuit of survival.
BS: Great thanks for having me
JG: Yeah, thanks for telling us all this information about the LEND program.
BS: Yeah, no problem.
JG: That's the end of Disability Justice. Since we cannot be fully aware of everybody's difficulties within the community, we'd really like it if you would send us your email DisabilityJustice@KBOO.org
DW: Also, we're always looking for fun inexpensive things to do out in the community. Go to DisabilityJustice@KBOO.org to contact us and give us your ideas.
(Haunting outro music with lyrics "Caught in the Fire")