Breaking Barriers: Inclusive Education for Students with Down Syndrome ~ 1033

Tim Villegas
From MCIE. Belonging is a human right and not a right that should be earned. My name is Tim Villegas from the Maryland Coalition for Inclusive Education, and you’re listening to Think Inclusive, a show where with every conversation we try to build bridges between families, educators, and disability justice advocates to create a shared understanding of inclusive education and what inclusion looks like in the real world. You can learn more about who we are and what we do at mcie.org.

Luvy Jenkins has over a decade of experience working with kids. Growing up in Mexico, she did not have much experience interacting with children with disabilities. However, while she was getting her Bachelor of Science degree in psychology and child development, her cousin was diagnosed with autism. This inspired Luvy to seek a career in special education. Originally, Luvy’s background was in behavior as she worked in an ABA clinic. Then, while getting her master’s of education in early childhood special education, she fell in love with the classroom. Luvy taught at the Rise School of Austin for seven years before transitioning to her role as Education and Medical Outreach Manager at the Down Syndrome Association of Central Texas.

Luvy also started a small business in which she provides consulting and tutoring services for children with and without disabilities. In this episode, Luvy Jenkins discusses the importance of inclusion in education and the barriers that families face in achieving inclusive education for their children with Down syndrome. She highlights the need for support and training for teachers, as well as the role of school administrators in promoting inclusion. She also shares her experience working at the Rise School, an inclusive preschool that values diversity and fosters social-emotional growth in all students.

Before we get into today’s interview, I want to tell you about our sponsor Together Letters. Are you losing touch with people in your life, but you don’t want to be on social media all the time? Together Letters is a tool that can help. It’s a group email newsletter that asks members for updates and combines them into a single newsletter for everyone. All you need is email. We are using Together Letters so Think Inclusive patrons can keep in touch with each other. Groups of 10 or less are free, and you can sign up at togetherletters.com.

And now my interview with Luvy Jenkins.

Tim Villegas
Luvy Jenkins, welcome to the Think Inclusive podcast.

Luvy Jenkins
Thanks for having me today.

Tim Villegas
So help me understand your role. So it’s Education Manager. What does an Education Manager do? And also, how do you say the acronym?

Luvy Jenkins
So the Down Syndrome Association of Central Texas is DS ACT. DS ACT, okay, yes, got it. I am their Education Manager. Now I’m their Education Manager and Medical Outreach Manager, working in those two fields. But as the Education Manager, my role basically encompasses all education resources. I provide free training opportunities to classrooms, teams, districts in Central Texas.

What those look like are the Down Syndrome 101 profiles, a really popular one, just making sure that teachers understand how best to approach learning and teaching a child with Down syndrome. There are huge strengths that they can take advantage of. Another one is making sure educators understand inclusion. Then there’s an IEP one, just making sure that parents understand because the trainings are also for parents. I’ll do webinars—during lockdown, we had about a webinar every other month—on IEPs and ARD meetings, as well as behavior, which is a big one too. So the functions of behavior, how to work through behaviors.

We also organize an education conference each year, usually in the fall, where we bring speakers to talk about reading instruction, math instruction, and inclusion—any topic that would benefit both educators and parents. Another program we started is our World Down Syndrome Day kits. Each year we provide these kits for schools. Parents and teachers can sign up just to help spread our mission on inclusion and on Down syndrome in general. We buy books, make activities—some of the activities we’ve used are actually from Heather Avis, who’s the author of the book. She makes a lot of the activities herself, which is great. So we’ll include those in the kit as well as the Down Syndrome 101 packet.

We also do Educator of the Year awards to recognize teachers. I was a past educator for seven years, and a big part of that was understanding the impact I made on families. So with this award, we’re recognizing a teacher and educator each year that’s made an impact on a family or one of our members. So little programs like that, just in the education realm, is what my job encompasses.

Tim Villegas
So I heard you say Heather Avis. Is Heather Avis affiliated with DS ACT?

Luvy Jenkins
She isn’t yet. We have some members who are friends with her, and I connect with her. But I love her podcast, The Lucky Few. The books she’s been publishing the last couple of years—we’ve used both of her books, especially because they’re newer. They speak more to elementary school kids, and they have those activities already made. She’s a well-known resource for families with Down syndrome. So in that whole kit, hopefully, teachers are able to access her podcast as well and learn from her. So she’s not directly affiliated, but we use a lot of her information.

Tim Villegas
Why is inclusion specifically for families that have children with Down syndrome important?

Luvy Jenkins
First and foremost, for me, belonging and inclusion go hand in hand, and belonging is a human right—not a right that should be earned. Just given the principle that we’re all humans, that’s the first reason why I think inclusion is so important. We all deserve to be with our peers and not be segregated.

On top of that, research shows that school achievement and quality post-school outcomes are positively correlated with the amount of time kids spend in general education classrooms. That in itself is huge. While some kids do benefit from one-on-one support, overall, research shows that even kids with the most severe disabilities benefit from being in the general education classroom—not just sitting in the room, but fully engaging.

Making sure kids are participating and given appropriate support benefits not just kids with disabilities, but all kids. Families with kids with Down syndrome are seeing kids go to college and have full-time jobs, and a lot of those skills are learned in school—even self-help skills like being patient and following through with a task. Being in an inclusive environment is huge for all kids, but especially for kids with Down syndrome.

Tim Villegas
What are you finding families are coming up against as far as barriers to inclusion?

Luvy Jenkins
There are a lot of barriers. Even if a teacher is all in and wants to promote inclusion, teachers are overworked. There’s a lack of teachers, a lack of substitutes, and a lack of time. So even if a teacher wants to learn strategies, a huge barrier is that teachers aren’t supported enough.

Research shows that inclusion—which is not a place but a mentality—needs to be embodied by all staff, and it begins at the top. Administration needs to understand the benefits of inclusion because they’re the ones giving teachers extra planning time, covering classes, and providing collaboration time. If I’m a general education teacher and I want to collaborate with a special education teacher, I need that time.

Another barrier is families moving to a new city and asking us, “What’s the best area for my child to be included and loved?” We can’t answer that because it’s hit or miss. You might go to a wealthy district with lots of support but have a teacher with outdated thinking. Or you might hear bad things about a district but have an amazing teacher who changes your life.

Another barrier is making sure the IEP includes all the modifications and supports a child needs to succeed—and making sure teachers follow through. Even if you have a good IEP, there needs to be a way for all teachers to implement it consistently.

Tim Villegas
Do any of your families run into this: they’re at an IEP meeting, and the team is discussing modifications to the curriculum, and the school team says, “We can’t modify curriculum if they’re going to be in a general education class.” Does that ever come up?

Luvy Jenkins
It does—and a lot more than you would think. We tell families to approach these meetings in the most collaborative way possible because most of the time, teachers and administrators want the best for the student. They just don’t know how to make it work. They’re stressed, time-constrained, and lack support. They might not have had professional development that shows what you can do to help all students.

I wish every school had professional development on Universal Design for Learning (UDL). Every teacher—general ed or special ed—could implement UDL in their classroom. When done successfully, you’re already meeting the needs of every student, with or without disabilities.

If you’re a general ed teacher worried about modifications, UDL is the base. It gives kids different methods of access to learning and different ways to express their knowledge.

If you go to an IEP meeting and a teacher says they don’t modify, it’s hard. All you can do is give them examples of how to do it—if you know. Parents often don’t know either, which is hard. But there are resources online. For example, the Tar Heel Reader website has books like The Great Gatsby adapted with pictures and shorter sentences. Teachers don’t have to start from scratch. Most things are online for free or minimal cost.

Tim Villegas
Great point. I think what you’re talking about is the Tar Heel Reader. Let me check—yes, it’s still there. I used this when I was a classroom teacher. The mindset shift that you can modify or adapt materials in a general education class is such a big hurdle for teachers because it comes down to their sense of fairness: “Why should we do this for one student when no one else gets this?” But the thing is, that is their special education.

Luvy Jenkins
Exactly. I’ve heard that before, and I went to a speaker years ago who talked about fairness. It doesn’t make sense when you think about it. A child who needs a wheelchair—is that unfair to a child who walks? No. They need that to succeed.

If you’re not providing tools, you’re not giving that student a way to succeed. You can always fade supports later. If a child needs a word bank to pass a test, why does it matter if they have it and someone else doesn’t? Thinking it’s unfair shows a lack of understanding of different learning profiles.

That’s why UDL is huge. If a kid can’t write a five-paragraph essay, they can make a clay model, a podcast, or a poster. They’re still showing their knowledge. If you’re not giving a child a means to show what they learned, how do you know they’re learning?

Presuming competence is huge. If you don’t give tools, you don’t see success, and then you assume incompetence. It’s a cycle. Every human has different ways of learning. Teachers should at least try because they’ll be blown away by what kids can do when given the right tools.

Tim Villegas
I always think about this: I pay for an annual subscription to Grammarly. Are you familiar with Grammarly?

Luvy Jenkins
Yes.

Tim Villegas
I’m a writer—I write blogs, articles, and scripts for the podcast. I’m a horrible speller and grammar does not come easy to me. Having that assist is huge. As a communications person, I had to get over the idea that it’s cheating. But it makes me a better communicator. It’s absolutely fine to use that—just like other aids and supports.

Luvy Jenkins
Exactly. If you’re intentional with what the student needs, it’s not cheating. If you’re giving a child the answers to a test, that’s over-supporting. But if they only need a word bank and can answer every question, that’s great.

If you give them a test with 30 questions in small print and no cues, they might not show their knowledge. It’s about finding that balance between lack of support and over-supporting.

Another example: an audiobook versus reading a book. A child might listen to The Great Gatsby and understand everything, but if you make them read a chapter a day, they might not have the reading comprehension or vocabulary yet. Providing an audiobook isn’t cheating—it’s what’s best for that student.

Tim Villegas
In your previous role at the Rise School in Austin, it seems like there’s an inclusive philosophy in early childhood. Could you share your experience?

Luvy Jenkins
Definitely. I started at the Rise School as an intern when I went to UT for my master’s in special ed and stayed for seven years because I loved it. It’s the golden star of what an inclusive preschool should look like.

The model is that 50% of students are neurotypical and 50% have a disability. We had a lot of support in the classroom: one lead teacher, a teacher, and an assistant—a co-teaching model. We also had therapists on staff who pushed into the classroom, observed, played with all kids, and coached teachers on strategies like speech cueing or sensory tasks.

My experience at Rise opened my eyes to why inclusion should start from the very beginning. Growing up in Mexico, I never went to school with kids with disabilities. I had to intentionally shift my mindset as an adult. At Rise, kids as young as 12 months are naturally in an environment where 50% of their peers are different. Teachers model inclusion and answer questions in a positive way.

We celebrated differences. Social-emotional growth was huge. Kids learned empathy and built authentic friendships. Inclusion without belonging isn’t real inclusion. Belonging means your presence is missed. At Rise, kids noticed when someone was absent and cared about them.

Academically, preschool is the easiest time to differentiate instruction. For example, if I’m reading a book, one child might work on color identification while another works on retelling the story. Same book, different goals. It’s natural at that age.

Tim Villegas
Is the Rise School only a preschool?

Luvy Jenkins
Yes, it goes up to pre-K. Parents always tell us they wish we could open an elementary or high school.

Tim Villegas
Is it a charter network or private school?

Luvy Jenkins
It’s technically a private school and a nonprofit. There is tuition, but 50% of operating costs are covered by fundraising. The Rise School values its teachers and pays them the same as kindergarten teachers in public schools, which is rare in preschool settings.

People think preschool is easy and just fun, but it’s critical for laying the foundation for learning and social-emotional skills. The Rise School made sure teachers felt valued financially, which wouldn’t be possible without fundraising. We also had to fund therapists, which is expensive.

In the best-case scenario, all preschools would be inclusive, and it wouldn’t matter. We’re hoping more people understand that this can be a reality, but I think we’re still years away.

Tim Villegas
So what’s one thing—our audience is mostly educators, school leaders, and families of children with disabilities. Everyone wants inclusion. From your perspective, what advice would you give to people who want to see inclusive education move forward but can’t seem to get traction?

Luvy Jenkins
That’s a hard question. I wish I had the perfect answer. If you can find the right person in the district who’s open to professional development, share resources with them—conferences, free webinars, studies showing the benefits of inclusion.

Teachers often want to learn and are already doing great things, but they need support. The people we need to target are school administrators, superintendents, and school boards. Start from the top.

When voting locally, research who you’re voting for on the school board because they play a big role. You can also set up meetings with legislators. The Arc of Texas has tools online to guide those conversations.

Starting from the top is what’s going to make a difference because teachers are passionate and want what’s best for kids—they just need support to make it work.

Tim Villegas
That was great. That’s exactly what we say too—changing the mindset of school leaders and administrators. Luvy Jenkins, thank you so much for being on the Think Inclusive podcast.

Luvy Jenkins
Thank you. It’s great to be a part of it.

Tim Villegas
Think Inclusive is written, edited, and sound-designed by Tim Villegas and is a production of MCIE. Original music by Myles Kredich.

Attention school leaders: Did you know you can team up with the Maryland Coalition for Inclusive Education to promote inclusive practices in your school or district regardless of your location? MCIE has partners in Maryland, Illinois, Virginia, Arkansas, Oklahoma, and more. Our goal is to expand partnerships in every state in the U.S. and beyond. The first step is to start a conversation with us. Visit our contact page at mcie.org/contact and let us know you want to transform your educational services to be inclusive of all learners.

A special thanks to our patrons Kathleen T., Gabby M., Melissa H., Mark C., Cathy V., Joyner E., Jared T., Aaron P., and Carol Q. for their support of Think Inclusive. Thanks for your time and attention, and remember: inclusion always works.