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Using Data to Advocate for Inclusive Education and Policy Change: Otter Voice Meeting Notes

Using Data to Advocate for Inclusive Education and Policy Change

Tim Villegas1h 4min

Tim Villegas

00:00

Tim, Hey all. My name is Tim Villegas, and this is think inclusive, our podcast that explores inclusive education practices through conversations with people who are doing the work of inclusion in the real world. I'm coming to you again from the Marietta square, if you're watching on YouTube, the mural behind me is the name of my city in very colorful letters in the background. I'm also standing in front of railroad tracks. This week for think inclusive, I have two really wonderful guests, Liz Zogby from Maryland, and Stephen Davis from California. They are both parents of children with disabilities, fantastic advocates and self described data nerds. I had a really great conversation with them about how data informs their advocacy, specifically around inclusive education and how it has affected how they think about policy and how they've advocated for policy around inclusive education. Before we get into that discussion, I want to talk to you a little bit about our sponsor, IXL. So IXL is our sponsor for season 12. It's an online teaching and learning platform. I've been talking a lot about how teachers use this platform in schools, and there are certainly a lot of teachers that do that. I've said this before, but about a million teachers in the United States use it in their classroom. It's designed for kindergarten through 12th grade. But the other thing that's really nice about this platform is that it's also for parents, so parents can use this platform and use it at home. So definitely check out IXL. Ixl.com/inclusive is where you can find out more information. Thank you again for our fantastic sponsor. For the whole season of season 12, we are going to take a quick break, and then you'll be able to hear my conversation with Liz Zogby and Stephen Davis. We'll be right back. Oh,

Unknown Speaker

02:39

music.

Tim Villegas

02:51

Liz Zogby and Stephen Davis, welcome to the think inclusive podcast.

Speaker 1

02:56

Thanks for having us. Great being here. You're really a YouTube YouTuber. You've got the blue light behind you, that's

Tim Villegas

03:05

right. I got my fancy camera. I've got my my background light. If you have my key, you know, my key light. I research all this stuff to get us started. Will you both? Liz and Steve gives a brief introduction of who you are and what you do in this space. Sure,

Speaker 2

03:25

I live in Baltimore City. I have three kids, one who just graduated from college last weekend, another college student, and this a 13 year old sixth grader named Hope, who has Down syndrome. That is my entry into this community and space, and I co chair with my friend Lauren ocholek of the Maryland Down Syndrome Advocacy Coalition. So we're a statewide Advocacy Coalition. We have five major Down Syndrome organizations in our state that are represented on our steering committee, and we do legislative and policy advocacy. I have a grant funded project called the Special Education Policy and Advocacy Project. I'm also co chairing the special education work group with our state superintendent that's been convened by our State Department of Education, reviewing special education and making recommendations for legislative and policy changes.

Tim Villegas

04:24

Thanks. Well, sure.

Speaker 1

04:27

So my name is Steve, far away in California. I'm sort of policy numbers advocate online and in the community here, I've been really working on trying to build a local policy advocacy infrastructure, Palo Alto, where I kind of obsessed with numbers and how the policy systems work. That's how I met Tim. I think, yeah,

Tim Villegas

04:54

I think Steve, he just started emailing me, and then I started emailing you back, and that's. Worry

Unknown Speaker

05:00

we internet stalked each other?

Tim Villegas

05:03

Yeah, well, I'm so happy that both of you are on in particular because both of your love of data and how you both use the numbers to inform your advocacy. So why don't we start there? Both of you have used the data, the research, to inform what you do for your own family. How did that information inform how you advocated for your children? I don't know who wants to go first.

Unknown Speaker

05:37

Go ahead, Steven.

Speaker 1

05:38

I'll go first. Yeah, I'm My degree's in math, so I kind of look at numbers by else, I automatically look at numbers. A number of years ago, I don't remember, stumbled on the Department of Education's report on idea, and stumbled into it and found that California was utterly dismal for inclusion. We have the most kids in public schools in a segregated setting in the United States, and that kind of blew my mind. And then I was like, oh, some of these questions look familiar. I wonder if this data exists at the school district level or in Department of Education jar in the local education authority, and sure enough, buried on the California Department of Education website. I found data on my old school, San Mateo Foster City School District, that said, Not only were we more segregated than know that I was living in the most segregated state for public education, but that my school district was 50% more segregated than California, and it kind of blew my mom. So I think the numbers were, if I remember, nationally, the average is a bit over 13% of kids spend less than 40% of their time in general education. The top states are around 5% and California at that point was at, I think, 19.7% San Mateo, Foster City, I think, was at 26.6 or something like that. So it was kind of dismal, and I had no idea, and I don't think anyone else did, and it radical changed the way I thought about where I was at and what I was seeing, because I had no context before then I thought, think everybody's doing the best they can, and everybody's doing well, and when you find an outlier of an outlier, kind of changes the way you look at things and the way you talk to everyone.

Speaker 2

07:52

So I think I have similar story in that my master's degree was in library and information science. I've spent a long time doing polling as part of my freelance work, so I'm interested in what the data says about any particular issue. When my daughter was born in 2000 I started lurking on listservs and in Facebook groups, hearing these stories of segregation. I was instantly interested in what the data said and and I was particularly interested that when I looked at the overall reporting about students with disabilities in my state of Maryland, about 71% of students with disabilities are included in general education classrooms, 80% or more at the time. But that didn't seem to be reflected in the experience I knew families who had kids with intellectual disability. You have to dig a little bit deeper to say, Okay, well, what is the placement data for students with different kinds of disabilities? Because of my background in polling data, I was interested in looking at cross tab data. I wanted to know, well, when is this happening? You know, at different grade levels, what does the placement data look like? And as soon as you start to dig deeper, you get a much better sense of the reality, and I was able to see that reflection. What's interesting for my story is that I didn't really need it for my personal advocacy, because my older children had attended, and my daughter still attends Public Charter School here in in Baltimore city that is a progressive arts integrated project based learning kind of school that's fully inclusive from when she was a baby, my other children were in elementary school. The founder of our school and our principal both told me unequivocally, like, of course, Hope's gonna go to school here. You don't have to worry about that. In some ways, that freed me up to be able to say, okay, I'm good, but I'm good because of a lottery like the luck of the draw. I'm hearing all of these stories of people who are fighting so hard to get their child with Down syndrome included in kindergarten, which just seems wild to me. I need to understand how that could be happening. A lot of our work with the Maryland downstair Advocacy Coalition mdec is taking that data to. And giving folks the opportunity to tell their story, I think that marriage of data and stories is where advocacy really sits. It really resonates with legislators and policymakers. Can hear the actual experiences of their constituents and see how that actually is reflective of a reality that they understand in numbers. So we try to create opportunities for self advocates in particular, and for family members to tell their stories and then back that up with a here's a one pager that can show you, yes, only 20% of students who have intellectual disability are included in the state of Maryland in general education classrooms,

Speaker 1

10:37

right? The way, the way I describe it when I futilely try to convince parents to come to school board meetings and speak up is I say I'm kind of or every meeting providing the drum, the numbers, I provide the baseline, and then it would really help if you came and you told your stories and provided the melody on there, those Personal stories told personally, as opposed sort of a more. Are we? You're we're vaguely professional, professional advocate. When I say there's an incident, it is respectfully listened to. When I'm there or child himself speaks on it's a slam dunk. We're just pushing the thing along, day after day, Steven,

Tim Villegas

11:20

part of your story,

Speaker 1

11:22

I believe, is that you moved school districts because of the data. Is that right? So it's intro. I'm not an advocate. I never get like the person to go with you to an IEP meeting. I like helping people be prepared and knowledgeable going in. I think that's much more useful and meaningful. So one of the things I said is, well, you can fight the school district, but are you sort of IEP a school into doing a good job? You know, I can write an amazing, glorious IEP with great goals and certain but if the school district isn't sinfully implemented, it doesn't mean anything. Well, if you're not happy here, why don't you straight to a different school district. It's much cheaper than hiring a lawyer, and you're more likely to get better. And I did that to other people for years, and then I was like, hey, you know this applies to me, too. By The Numbers, moving from San Mateo to Palo Alto made a real difference, right? I will modify my initial statement by saying, once you get in a good school district, probably or school, it starts getting to be, unfortunately, a bit of personal services exercise and finding the right school and the right teachers and the right team, even if the numbers, but the numbers are a good start,

Tim Villegas

12:52

since both of you are steeped in data and percentages, LRE inclusion rates, we have a lot of listeners who are very interested in inclusive education, inclusive practices. I'm wondering if, in your own research, if there's a data point that really sticks out that our listeners should know about that's so

Speaker 2

13:18

interesting. This is such an interesting question, because, you know, there is the ability to look up placement data, and you can look it up for your state or your local education agency, that can be really important. To me, the most important thing isn't so much a particular whether it's you're going to look at the lrea, that number of kids, percentage of kids, in 80% or more of the time, or you're going to look at the separate schools. To me, it's looking at variability. When you look at your state, what really matters is, how does your state compare to other states? When you look at your district, how does your district compare to other districts in your state? The thing that can indicate for you is, you know, data gestures at a problem. So when you see that kind of wild variability that we see in Maryland, and we you know, see all over the country in different ways, it can indicate to you where you need to look for the solution. So if what you see is in this district, twice as many students are being identified as having intellectual disability as the neighboring district, that tells you something's going on with the application of an eligibility tool for intellectual disability and and that will lead you to ask questions. Well, maybe you don't want to give consent for your student to have an IQ test, because that's what it's going to be used for, and that's going to spiral into placement. I guess it's not so much the data point as what you do with it once you identify it. Looking at that kind of variability can really help you better understand that reality.

Speaker 1

14:55

And you have to deal with the real constraints you have. I'm here in California because my. A 92 year old father 15 minutes away, and my in laws were in their 80s and not thriving, are all about 30 minutes away. So I'm kind of here for the duration, so I have to work with what I got, even though it's frustrating being a kind of that doesn't really upgrade public education and doubling for kids in special edging. So we all have to work with constraints. I have actually there. I think there's a couple of data points that I think I carry was one is the National Council on Disability. This study on segregated classrooms in 2018 must if you don't have the link, Tim, I will share it with you, but you can find it by think National Council of disability segregated classroom as your Google search. And there are a couple of pieces of information in there. One, there is no data that having kids with disabilities in class with the general ed kids hurts the education of general ed kids. In fact, some modest indication that it helps, two, that kids in segregated classrooms wind up with 35% fewer minutes of academic instruction per day. My snarky way of saying that is, you know, you're starting behind and getting behind her every and we, you know, unfortunately, or whatever the US system, we don't have good data between states and between you know, how different places are doing. But what I can say, uh, it's pretty clear that, on average, if I get substantially fewer minutes of actual edits in school a day, I am not going to be getting as good of an education. So that, to me, is just such a powerful start. And then the other thing I've been telling parents of young kids is you have to have high expectations. And there's like, I think, 320 or something, college level programs for kids with intellectual and developmental disabilities in the United States. So it's like, not only can you have expectations that are high, but there are places you can go, food service. He has an honorable protect profession. Is not the only answer for your kid,

Tim Villegas

17:21

exactly, yeah. And I know that Think College has a database on their website that has, yeah, they're it's awesome. A lot of different programs available that inclusive post secondary education. You know, there's a so there's a data point that sticks in my head. I'd like to share that with you, and it's actually one of a district here in Georgia. I'm not going to name the district, because it's not about calling out a particular district, but I remember, I know of a family who their child has Down Syndrome and was working and pursuing full inclusion in this district, there was a conversation that the special education director was having with the family around inclusion. The child was not included to the level or to the amount of time that the family wanted. The special education director said, Well, we have a inclusion placement rate. Inclusive placement rate of over I think it was 90% or maybe over 80. It was really high for Georgia, the state percentage is in the 60s, which is pretty average for the United States. But this particular district was very high. What stuck out to me in that conversation was that this district had a high inclusive placement rate for students with intellectual disabilities. It didn't make the difference that the family wanted. So we're looking at all this data, and it's wonderful data, and I'm very thankful that we can have consistent data around inclusive placement rates in school districts. But that doesn't tell us the whole story. It doesn't tell us what kind of inclusive practices are happening, whether those learners are feeling a sense of belonging, whether their curriculum is being modified, whether there's co teaching available. There's all of this information that is missing when we're looking at just LRE data. So if you have any thoughts, well, that's

Speaker 2

19:34

right, that's the story, the experience, of kids and families and and and it's critical. I mean, it the data, just all it does is is point to pot, to possibility or challenge, but it doesn't tell you about the experiences of kids, and that's really what it's about. Sure, I'd trade 15 minutes of you know, inclusion time for a student feeling they truly belong. And. Middle School that they're participating in. They have friendships and I mean, I think every parent probably feels that time is something we're measuring, but the time isn't the thing that you have to be there. You have to have that presence, right? I think Eric Carter, elements of belonging begin with that. This presence, you have to be there, but they can't end there. That's that's the that's the baseline. So for sure, for sure. And you know, the Tim, I think one of the, one of the things that really has stuck out for me is the placement for students who take the alternative assessment, those students with the most significant cognitive disability. And I know that mcie works really hard on focusing on the inclusion of those students. The reason is, if you can get educators and systems to figure out how to support kids who have the most significant support needs, other kids become a no brainer. If we can figure out how to meaningfully include kids who need a lot of modification support, we can figure out how to, you know, include all kinds of kids, that data is something that you have to request. And I encourage folks to learn how to put in a data request. Here in Maryland, we have a Public Information Act, but I think in most states, there's something like the equivalent of a FOIA request that you can make to find out what that data is, and you can make a request to find out what is the placement for students who are eligible to take the alternate assessment. We don't know because the federal government doesn't require that people track that, but it's out there. It's just takes a little digging in a database. And I the last time someone tried to do some systemic research about it, they found that less than 3% of students who take the alternate assessment are included. And I think people generally think that that's that's a really low number, and it's startling to legislators and policymakers when they hear that there's, there's no reason for that kind of segregation, when all the research about that particular very small group of students indicates that those students have such better outcomes when they are included in general education classrooms. We can do it. We know how. We need the will to do it.

Speaker 1

22:11

When I'm talking to people about IEPs, I go, okay, the IEP is an agreement between you and the United States. It's a contract, basically, but like any contract, it can't make someone do a good job. So got to look at the person on the other side of the table, or team on the other side of the table, and say, do they have goodwill, adequate resources and competence? And that's the question. If you know, having your bathroom remodel. You can write a wonderful document about remodeling your bathroom, but if the person doesn't want to do a good job, isn't competent and doesn't have resources, it doesn't matter. Oh, I think people get a little wrapped up in the legalism of the formalism of the IEP and a little kind of underlying how important it is that the people on the other side of the table want to educate your kid doesn't really want to educate your kid. And I will say my experience is I've been able to tell that pretty. I mean, the numbers tell me everything. We can write a beautiful IEP. I can be on paper, heavily included, but it's really about working those people, to get those people that your child's teacher to really want to teach your kid, want to include your and the school wanting them there, and if they don't, it doesn't matter what we write. Unfortunately, I mean, the numbers work both ways in that regard.

Tim Villegas

23:42

And the data that we're talking about is publicly available. And Liz, thank you for that recommendation, because I think that could be very powerful to request that kind of information about the inclusive placement rates of children who are eligible to take the alternate assessment. How have you seen data move policy, if at all, in your local context? Well,

Speaker 2

24:16

it's interesting. I think that there has been attention to students who take the alternate assessment in Maryland over the last number of years, you had some really wonderful educators from Carroll County here in Maryland who worked with the tie center. They talked a little bit about the way that they're using data in a kind of interesting way, I think, for the for those students, thinking about how sometimes data reveals and it also hides, we think about placement in these basically arbitrary categories, you know, less than 40% 40 to 79, and 80% or above, but that they were really starting to track in a more finely grained way as they increased meaningful inclusion for students. It meant a lot to move a student who was only included 45% of the time to 70% of the time, even though the data we typically track won't actually show because that child is still in lreb. So I think that there's ways that people are trying to work around those things, but I also think that it's important for folks to track the targets that their state sets in their ESSA plans and in their annual determination letters that the US Department of Education puts out, so that people can really see, you know, use that data, bring it to your policy makers, show them they don't understand much of this data, and they don't think about it. So I think it's a matter of explaining what it means and then tying it to something, whether it's the training requirements, the licensure requirements for teachers in your state, or what the funding is for students in your state, thinking about using placement data and tying it to policy objectives and using it to show that there's a problem, can be powerful for Policy Advocates.

Speaker 1

26:14

I did a report last was, I think the idea compliance material comes out in July, when we're all busy thinking about beaches instead of IDEA compliant. I put together a report like, just when the idea compliance data was it like the last seven years. And it is, what are we? I think we're 48 years in the idea something like that, because

Tim Villegas

26:37

it sounds 7549

Speaker 1

26:41

4049 and I think they do it like only 27 states are actually in compliance with idea, actual full compliance with idea after 48 years and complex is like passing your written test for your driver's Right? It's not that you're doing a good job. It's that you know, you know whether you're allowed to write turn on red or not, and that you're filling out the paperwork, right. And a number of states, including mine, have never, during those seven to eight year period I was looking at, ever been actually in full compliance with idea. I think it was like 12 or 13 states that had never passed completely and that we don't talk about this. And I think actually us simply talking about it's sort of like my old school district. They didn't know what they didn't know. You know, everybody kind of runs on folklore, and they all assume they're doing just fine. For example, I, I know a lot of people focus on how many kids are in the most inclusive environments. I kind of go to the opposite. I go how few kids are in the least inclusive environment. I think about it. You know, it's like we judge car safety by not who's got the most miles on the road, but by who has the fewest car accidents. So what states have the fewest kids in segregated settings? What kid states have fewest kids in separate schools? Kind of, to me, is a better measure, like I looked at California and New York, because someone was asking me about New York, and they both have as their target for number of kids in most segregated settings, 18% and I'm like, Well, I'm a good bureaucrat. Why is that about 10% better than where they were at as they're at from a national point of view, like we're aiming for, still being the worst in the United States, in California and New York, for kids in the most segregated setting. About it. And I don't even know that many people know where the States stand on these issues.

Speaker 2

28:56

You know what? I have one more thought, which is another way that I've used data on a direct policy way every year, student states are supposed to keep that eligibility for the alternate assessment to under 1% of students who are assessed overall. And I really found that the the waiver request that states are that states are required to submit if they're going to exceed that 1% is a really amazing opportunity for advocacy and for seeking policy change. So the only accountability around the alternate assessment is is the number of students who take take it, but it provides this window to talk about why seats are exceeding the one person, and when they have exceeded it multiple times, they have to have an action plan that talks about how they're going to get that number down and and, and they have to have the opportunity. Opportunity for the public to comment on that waiver request and that action plan, and it's a really wonderful opportunity for advocates or parents or whoever to to submit public comment. You know, you can find your waiver request on your State Department of Education website. Usually there'll be, you know, a couple week or a 30 day window for public comment and read through it and just make a comment about how, you know, students who take the alternate assessments should be included. And you know what? Take a look at what the eligibility tool is that's used in your state. But here in Maryland, that's been a really wonderful way to to give some feedback to our State Department about ways that we we think that they could lower that number and meaningfully include access to the general education curriculum for students who take the alternate

Speaker 1

30:55

assessment. That's a great idea. Yeah, and I don't know the machinations here in Sacramento, how things happened. But for a long time, all of the LEA data for from for Department of Education, for idea, were buried in these Word documents, PDF documents on, you know, on a Back Page, kind of of the state website, while we have this beautiful, fancy school dashboard for all the general ed kids that allows you to do all this. Well, it doesn't make it too easy to do comparisons. But, you know, you can, you can look a look at how, from an academic point perspective, students with disabilities are doing in different schools and school districts, you can't cross tap that with inclusion data. But finally, this year, they put in a database the some of the inclusion data, so it was more accessible. And so just actually, I think fighting to get the data out there and more available is important, just because people are better equipped to do individual advocacy when they know this, when the data is findable, yeah, yeah, gives you just, it's just asking for data is a start. Do

Tim Villegas

32:32

for educators who are listening, because we do have a lot of educators who are either working in schools, they're school leaders, principals, even you know, Superintendent, assistant superintendent level directors. What's kind of the big takeaway from this discussion about data like, what would you if you were able to speak to them directly? What would you want to say to them?

Speaker 2

33:05

Well, I mean, I, I'd love for educators to know, to know the data about placement in their in their district and in their state, and to and to be curious in the same ways that we've been talking about parents and advocates being curious about why that data exists, and then in terms of making it actionable when you're sitting in an IEP table. I mean, I think it's important for educators to know the consequences of the decisions being made for an individual student. Because I think a lot of times, you know, I mean, from my perspective, people don't decide to be educators because they want to harm kids right. Think they become educators because they want to, they want to do right by kids and and I think sometimes when it comes to that individual table, sometimes educators think, well, this kid really needs to be segregated. This kid really needs all this extra support, and the only place that they can get that support is over there, because we don't know how to do it here, so we've got to send them over there. I think if educators knew the data for their context well and recognize that once that kid goes over there, they're not coming back, and that the outcomes for the kids over there aren't great, and that actually that that team they have assembled around the table, you know, can grow and learn and and and build more support, they would be The person questioning that decision at the table, so the parent isn't the only one, and it leaves the parent able, you know, to be the expert about the thing they're supposed to be an expert about, which is their child, not about knowing the data for their district, or knowing how to, you know, implement those supports in a classroom. Because that's not you. I always think whenever we talk about special education reform, and people talk about, well, parents need to, you know, we need more parent training. Or parents need more, you know, take these classes in the law. Or, I always think I don't want special education reform to rest on the backs of parents parents. You know, parents are being parents, and we need to figure out solutions to the problems that we see in special education that rests in the system, and that help us to allocate resources better and to train people better, and to, you know, build teams that function better. So, so if educators can understand the system and the context in which they work a little bit better, and can be that curious voice at the table. I think that that can really help. You know, every every team has to have someone sitting around who is the public agency representative, right? That's one of the required members of the IEP team. And if educators could ask that person, well, we want to provide this student with more services and supports, and we don't have the resources in this school to do that. How is the public agency going to help us provide the support so this student can stay in in his neighborhood school? You know that? I think that that would be really a wonderful way to kind of help us reform the system from the inside and the outside.

Speaker 1

36:24

It's it's interesting. The teachers I've most you know, no one gets into special education for the big bucks they are when they certainly go in. I believe they're all passionately committed to helping the kids with the greatest challenges, the teachers that frustrated me the most are those who seem to want to protect our kids from the world, as opposed to prepare them for it. And I think you know, it's like when I have a weak general ed teacher for my typical kid, as opposed to my special ed kid, it's a rough year, but when I have a weak teacher for my special ed kid, it's like it can be a Lost year, and it's really costly. And I think you uh, being aware of the consequences of not preparing our kids for the real world is is something I don't I think they just sort of like a hot potato game. You know, you move the kid from one system to the next system, or this year to the next year, push them forward, let someone else deal with it. But the problem is, at the end of the day, our kids, you know, face a 37% employment gap, a massive income gap, a huge poverty rates. So everything we can do to get them a real education, really, really, really, pays off. You know, you look at the numbers, not from the schools, but from the output of our school system for disabled people, and getting that real high school diploma matters profoundly. And you know, I we had the experience, I guess maybe like utilize, where they were pushing my son in second grade saying, Well, you know, you'll be able to stay in high school till you're 21 and, you know, don't worry about it. And you know, we'll do a certificate, and I'm like, he's in second grade, let's get him a high school diploma. We can have this discussion in 10 years. I'm not ready. I'm not ready to give up, and I don't want you to be ready to give up on my kid. We need to have high expectations, because the consequences are big, and I don't think a lot of educators are aware of the consequences of weak special education. And I don't think actually legislators are either, as if they were, they'd be pouring money into special education, because if you get kids with disabilities a real degree, then they can be much more independent. They don't need as much many services for the rest of their lives. And they can be income makers and parents and family members, as opposed to being sort of by design, on the goal for the rest of their life,

Speaker 2

39:40

their life. Yeah, you know that that makes me think about, sometimes people talk about beginning with the end in mind, you know, and in our Down Syndrome Community, one of the things that people, you know, we do tons of workshops about and is, is preparing those little about me, Doc. Comments, you know, that sort of talk about kids strengths and and and writing a vision statement for your child. And I, you know, we always start our IEP meetings by by reading our vision statement for our daughter. And I think that, I think that educators could be really instrumental, too, in helping families as they're recognizing, you know, some, some parents know that their expertise is their child, and sometimes parents need to be encouraged to to dig in to that that expertise and to show find different ways to show it. So I think educators could be really instrumental in helping parents to find ways to talk about the expertise that they have about their their child, and to think about, as Steve was saying, that that long term, you know, where do I want my child to be as an adult? What do I see that trajectory being so that the decisions that we're making in the second grade are the ones that are going to contribute to that child's life in 20 years and and, you know, the extra pull out time, a little here, a little there, okay, but when, when we're talking about radical shifts in placement and and, and making lifelong decisions like this, child is not going to get access to the full curriculum and is not going to get a diploma. And those decisions are being made for children who are seven years old. You know, that's unacceptable and and, you know, educators can really help parents to to realize that that those decisions need to be pushed against, and we should be doing it together.

Speaker 1

41:41

Yeah, it was interesting in high school diploma thing. Sorry, it was really interesting. There is a in California, and it probably varies by state. There's a little teeny, teeny little check the box near the back of our IEP that says promotion criteria based upon district standards or IEP goals, and this is like the single most important check the box in the IEP. And we saw it because I'm a paranoid reader of words in an IEP, and we went ballistic. And have been continually ballistic since it's been in there. But I sort of talked to some other parents, and I said, Oh, you know, there's this check the box that basically tells you whether the school thinks your kid's on a degree track, and they may check it in second grade, maybe earlier. And I've had parents go, oh, and then they come back to me a day or two later and go, yeah, that box was checked, and no one said a darn thing. You know, it's like, it's, it's basic, important information. You know, this is like us. Is why I hate calling us. We're equal members the IEP team. It's like, I'm the most passionate advocate for my kid, but I go to, well in a bad year, three or four, maybe 5b meetings, but my teacher goes probably to 20 or 30 every year. They've got professional training my speech. You know, all those people have had tons of years of training. It's their job is to be the experts. We are a team unified in goal, but we're not team fied in expertise or and we're there because we actually bring different things to the table. And so expecting us to carry the load for all of this is kind of absurd.

Tim Villegas

43:41

Well, before we get to our last segment, where can people find more information about what what organizations and groups you were part of? So Liz, you can go first, and then Steven, make sure to tell everyone about disability all Mac and whatever else you have.

Speaker 2

44:02

So the Maryland Down Syndrome Advocacy Coalition has a public Facebook page, so that's probably the best way. We are in the midst of building our website, but we're mostly volunteer crew so, but that's that's probably the best way. And then I love for people to follow the work of our blueprint Special Education Work Group in Maryland. And we have a website, and I'll send you that link, Tim, so you can put it with the notes or whatever. But it's, it's, yeah, it's called the blueprint Special Education Work Group in Maryland. You know, there's, there's little policy papers that are being put out each month on different topics, the recommendations that are coming out, I think in many ways, what we're doing is, you know, hasn't been done in a lot of places, and and, and I hope that it will have a bigger impact, even than just in Maryland. All right,

Speaker 1

44:58

so I have a website. Called Disability almanac.com. And like you, Tim, I'm experimenting with YouTube. So I have a YouTube channel called Disability almanac. Cleverly, I've been actually focusing initially on ABLE accounts, because they're pretty amazing if you've got a kid with a substantial disability. And again, numbers, numbers, 8 million people are eligible. There's 152,000 ABLE accounts as of last June. So that's 1.7% after 10 years after the laws passed. And so

Unknown Speaker

45:49

I'm kind of,

Speaker 1

45:51

I sort of, because there's so many things to talk about with disability, I just picked that one to sort of start with, because it's like, it's such an you know you can in California, and I think in most places, you can set one up in what like 15 minutes, go to your basically state ABLE account website and set it up, and, and, and if you haven't done that, you probably haven't done all the other things that you need to start thinking about for long term Financial and life planning, which is a big, a lot bigger issue for kids with more substantial disabilities. Because, you know, you you have to kind of keep your kid poor to ensure access to Disability Services, which is a whole nother can of worms to talk about another day. But you know, we have to, I think families of kids with more serious disabilities more extreme. What is the right word? I don't know, the kids with more substantial disabilities, you need to start thinking early about kind of putting the pieces in place for them for their whole life, and thinking much more intentionally about life after high school and all that, because you don't want to be sort of hit by surprise, by the way our system works. Awesome. All right. So

Tim Villegas

47:20

are you all ready for a mystery question?

Speaker 2

47:22

I'm so nervous. As a long time listener, I'm real nervous.

Tim Villegas

47:29

They're not that bad,

Unknown Speaker

47:32

sometimes not a quick listen.

Tim Villegas

47:33

But here's the thing, in what the magic of editing is that if it's a bad question, we just pick another one. Okay, great, yeah, so I don't stress, okay, what specific work of art do you admire the most? See if I can get to focus. There we go. Oh, I've got it. Hold on, there we go. What specific work of art do you admire the most? Do you want me to go first? Sure, because I have something in mind.

Unknown Speaker

48:15

Tim Villegas

48:18

I am a, I'm a, I'm a proud father, so I'm talking about my kids, my middle schooler, eighth grade, he, he's an excellent cello player, and he played something recently. I think it was Vivaldi. It was like a Vivaldi

Unknown Speaker

48:36

piece, and

Tim Villegas

48:40

and so we are, we're, we're going to be going to some Atlanta Symphony orchestra concerts coming up soon. And one of I was like, you know, checking them up on YouTube, because now I'm a YouTuber, so I might as well be watching YouTube videos so and so I got onto Atlanta Symphony Orchestra's YouTube channel, and they had this replay of Vivaldi's Four Seasons piece, and it's like, it's like, 50 minutes long. It's long, but I just could not, like, stop watching this piece, because I know how, like, I don't play I've never played a stringed instrument, like a like an orchestra instrument. I can play piano, guitar, and I've been in, like, rock bands, but not like, I've never played classical music. And I know how hard it is for my son when he's practicing a piece. It's like, he works so hard to to perform it. And just like pristine sound that an orchestra, like a very like high, like professional orchestra, can make with this music. It's just, it's phenomenal. And I'm just like, I don't. I'm in so much appreciation, because I it's uh unbelievable to me, so that that's the first thing that came to my mind.

Speaker 2

50:12

Okay, I've, I've so many things going through my mind. I'm gonna give you, I'm gonna, I'm gonna try to do the I have three things, but I'm gonna, I'm gonna do them really. Okay, okay, okay, and edit as you see the first one, the first thing that came to mind that. So I was gonna tell this little story before, and I didn't. I got my when I got my degree in library and information science. I did that because I grew up in Washington, DC, where, you know, everybody has like, an issue that they work on, right? They're like, a lobbyist, or they're like, work for a nonprofit, they work for the government. And I thought that I would go to college and, like, discover my issue, you know, and then come home and do that thing. And I didn't, because I studied anthropology. So it was like, all of a sudden, everything was like, relative, you know, it was like, so library and information science. I thought, Oh, this is good, because I can help people. Help people kind of research their issue. So as part of that, I had a one of my really early jobs was I worked for the chief, no, I don't know, a curator of sculpture at the Hirshhorn Museum in Washington, DC, which is one of the Smithsonian museums, and she was a scholar of Alberto Giacometti, who's an Italian mostly known for being a sculptor. He was also a painter, and she was really interested in his paintings, and she was working on that. And so I worked for her for about a year cataloging these images of his paintings, and they all are very similar to one another. And so, you know, and she was tracking where, you know, where they were in different collections. And so it was kind of puzzle to sort of follow them and try to figure out, you know, where they were, so that she could get the rights to put them in her book, you know. So Giacometti, for me, is like it just became something that, because I started to learn about it, became so much more interesting to me. Even though it wasn't something that I, you know, originally knew anything about, it just was interesting to me that in some ways, the more you learn about a piece of art, the more you can develop an emotional connection to it when you might not have started out with one. Do you know what? Yeah, no, oh, that's great. So that was okay. So that's my number one. My number two is Judith Scott. You know, she's that woman with Down Syndrome who now is there actually is a big exhibit of her work at the the American Visionary Arts Museum, which is a really wonderful museum, if anyone ever comes to visit Baltimore, of untrained artists. But Judith Scott was from California, and she had been she was institutionalized as a child, and spent most of her like several decades in institutions. And then, after her parents died, her sister found her and and brought her to live with her. And she started going, she was basically non speaking, and she started going to commute a community center and and people should look her up, because I'm not going to do justice to her story, but she it was an incredible artist, and she did these really fabulous sculptures that are wrapping yarn of different colors around different objects, and she created these really credible works of art. And I think her story is just, it's really profound. And seeing those works of art is really and then my last one, because you're performing arts, one which I hadn't thought of when you read the question. My daughter was just in the middle school play at her school, and it was just a really wonderful sort of continuity. So each one of my children went through this school participated in theater as a really small school, and each one kind of in their own way. You know, they like my daughter. My oldest daughter directed a play when she was in middle school, and it was this really amazing experience. And then my son was an actor. He actually went to the performing arts high school here in Baltimore City, called Baltimore School for the Arts as a theater major, but he was in the middle school play, and then my So, then when my daughter wanted to do the play, was like, Okay, well, try out for the play, and she got a part, and she it was a student written play, and she was the DJ. The play was called Murder on the dance floor.

Speaker 3

54:42

He only makes it through the first like five minutes of the play the first victim,

Speaker 2

54:49

but she had a few lines and she, you know, but the the experience of belonging in this cast, you know, practicing after school a couple days a week for me. Months, and then being in the play was really profound, and she she, I think it was such a growing experience for her, but also for all these members of the cast. And so one of the things that came up a lot was she talked a lot about how she was really nervous, she was excited, and she was nervous, and she talked about it all the time. And at one point I thought, oh my gosh, it must be driving them crazy, because she's sort of perseverating on it. But I think it actually provided this opportunity for kids in in in the middle school group who might not have felt comfortable saying, like, I feel really nervous about like, I'm excited, but I'm nervous, right? That, of course, everyone was feeling that, and she was able to verbalize that, and then they were all able to sort of talk about what they were going to do, to kind of strategize around that. So, like, that's what happens in inclusive community, you know, people and making art together. You know, what a what a wonderful way to be part of something. So, okay, those are my three things, amazing,

Tim Villegas

55:57

amazing. Thank you for sharing all that. Yeah, all right, Steve, Well, thanks

Speaker 1

56:02

for leaving me a big hole to try to follow on. So I will give you, I guess, one that you can check out and one that you can't. Probably, I've become I before. I thought, before we found out my son was autistic and my life veered into disability policy advocacy, or whatever we call this job, I thought I was going to do make original board games out of wood and craft. And I've gotten, since I can't, actually don't have time to do that, I've gotten rather obsessed with watching YouTube craft videos of sort of higher, higher craft, as opposed to, probably anything that I could pull off. And there is a machining channel so metalworking called click spring on YouTube. Since you know we're YouTubers now, called click spring, and this guy makes beautiful clocks he made, the he made. He's working on a version of that, you know, that machine that was found underneath the ocean, and like this computing machine that Greeks had made, the Aaron, the something something mechanism, anyways. And both the things he makes and the way he makes them are a delight. And enjoy just watching the craft of making craft. And then, you know, because I need to be competitive here, my my autistic son is a is a deeply committed whiteboard artist, and draws with amazing focus and passion on on whiteboards and and we have, we, we buy them by the you know, Like bulk whiteboards and bulk white board pens, because he's really hard on them and draws all over the place, much better on the boards than the walls. I'll take it, yeah, and but anytime we want to try to take a picture of one, he immediately scrubs off the the drawings with his hand. So it's, I don't know if it's, it's standard art or performance art, but all about the process.

Tim Villegas

58:45

I love it. That's right. It's

Unknown Speaker

58:46

all about the process. Yeah, oh,

Tim Villegas

58:47

I love it. I love it. I love that all. We're all proud parents.

Speaker 3

58:52

And also I love I was so scared about mystery question that it turned out to be the very worst part of the whole thing,

Tim Villegas

58:57

right? Exactly. Yeah, I love the mystery question. I do. I do

Unknown Speaker

59:05

have a data question on art, yeah. Liz ogby

Tim Villegas

59:07

and Stephen Davis, thank you so much for spending time with me on the think inclusive podcast. Thanks. This was so fun.

Unknown Speaker

59:15

Thank you for having us.

Tim Villegas

59:20

We are back. Oh man, it's hot. I need some cloud cover. Welcome back, everyone. I'm realizing that I'm getting a little bit more comfortable talking in front of the camera these days. I guess I am fortunate to get a lot of practice. We got some cloud cover so it's not so hot. I hope you enjoyed my conversation with Liz and Steven. I particularly liked the end of our conversation about the mystery question about art that we appreciate. It reminds me of why I love this job so much, having conversations and getting to know people in a different way, aside from their work. Work of advocacy or in the field, is just so rewarding. Okay, it's time for three reflections from my conversation with Liz and Steven. Number one, I believe, is something that Liz talked about when comparing percentages LRE percentages across state and school districts. No matter what state you live in, there's a way to find out the LRE percentages when you see big discrepancies, like the story I talked about in Georgia, where one district had a really high percentage and that was an outlier. What is it about that particular district that causes that percentage to be so high, even though, according to the family, they weren't including students with intellectual disabilities. Why was that number so high? I think that is an interesting question. Steven talked about not looking at the LRE data or how many students are in general education, but how many students are in the most segregated spaces, and what percentage of that is, if you look at the state data and compare that with the local data, what percentage of students with disabilities are either in that lower lrec, the most segregated spaces and settings, and then also separate schools. I think that is also an interesting reflection. Liz and Steven used their own strengths to enter into this work of advocacy. What are your strengths that you can use to move inclusive education and practices forward in your own context. That's what we talk about with students too, right? Using students strengths and and building on, upon upon the strengths for that student so they can move forward in their goals. It's the same thing for us, using our strengths to move what we care about forward. That's certainly my story. Audio and video production has been a strength of mine, so I am constantly trying to improve these media strategies to move inclusive education forward. All right, two for you. Two for you. Okay, here we go. Two things for you to do. So the first thing is, I would encourage you to try to figure out, wherever you live, if you're an educator or if you're a parent, what is the LRE statistics for your local school district? I am going to put up a link in the show notes to a blog post I wrote, This was years ago when I first joined mcie, that listed all the states and where you can find it. It's definitely not updated, because it's something that would take quite a bit of time. I have not invested the time to update it, but at least we'll get you on the path to know where to look. So that would be my first thing for you to do. The second is resource that Stephen talked about, which is the white paper by the National Council on Disability that talks about the segregation of students with disabilities. Definitely check that out. I'm going to have that in the show notes as well. That is the two things that you can do when you do either of those things, when you look up the LRE data or review the PDF from the National Council on Disability, let me know what you think. I'd love to know what you thought of this episode, or any of the episodes in season 12. You can always email me at T Villegas at mcie org. That's T, V, I, L, L, E, G, A, S at mcie org. That's it for this episode of Think inclusive coming to you from the railroad tracks of the Marietta square. Thank you so much to IXL for being our sponsor for season 12, we are so appreciative. Definitely check them out at ixl.com/inclusive Original Music by miles. Kredich, additional music from melody. Thanks for your time and attention and remember inclusion always works. You. That's it. Let's go.

Unknown Speaker

01:04:33

Huh? Mcie or.

00:0000:00