On the CASE: How to get help accessing special ed for your child

Last week, The Daily Northwestern ran an excellent in-depth story about special education access in District 65 and Evanston Township High School and how much work there is to do in Evanston to support both students with disabilities and students of color, particularly Black students.

While both districts provide special education services, parents, students and professionals interviewed by The Daily say the schools are failing to meet students’ needs.

By sheer coincidence, the day before The Daily's report came out, I interviewed Cari Levin, a clinical social worker and executive director of Evanston CASE, an 11-year-old organization that provides advocacy, support, and education services to families and caregivers in Evanston who are raising children with disabilities.

The organization works with families whose children pre-K to age 21 have any type of disability who attend Evanston public and private schools.

I talked to Cari because CASE is working hard to reach out more broadly in the community so families--particularly Black families and families of color--know they can count on the organization to help them make sense of the overwhelming maze that is the special education system, and depend on CASE to guide them, advocate for them, and empower them to make sure their children receive the education to which they have a right.

CASE recently sent out a survey to find out what the community needs, feedback from parents, caregivers, and guardians.

"Do they know who we are? Have they used any of our services? Is there anything they need that we are not providing for them," says Cari.

Fill out a survey.

To contact Cari and CASE: 847-556-8676 or EvanstonCASE.org

Here's my conversation with Cari Levin.

DE: Tell me why you founded CASE?

CL: My son has a disability. And back years ago, I had difficulty navigating the special ed system. And had difficulty in terms of feeling very isolated in the community. You know, you’re dealing with a complex kid. It’s difficult to get other people to understand that and often to feel welcome, so there’s a lot of isolation involved in that.

And even though I’m a licensed clinical social worker, I had a really tough time getting what my son needed and understanding how the system works. And so, after I was able to get him settled, I realized most people wouldn’t have the information that they need or the supports that they might need to navigate that system. And so, I thought I’ve got to do something about that. And that’s how CASE was born.

DE: So I think your point is that you, as a social worker, you have the background, the connections, and even with those things you felt completely overwhelmed and isolated.

CL: Right. And I think that’s one of the things that is most important to me and important to our organization is really being there for folks who may not have the resources that they would need in order to get the information and support and advocacy service. That can cost money that’s difficult for people to access.

DE: Tell me about what you do?

CL: We provide folks a way to engage with others who are going through similar experiences. Where they can get questions answered about the special education system, which is extremely complex to navigate.

We offer monthly support groups where parents can get together with other people to talk about a whole variety of things. We also have a private Facebook group for parents and caregivers. People tell me they find it extremely valuable. That it’s the only space that they can feel comfortable sharing anything, no stigma, no judgement. It’s a safe space.

DE: How many people are in your Facebook group?

CL: There’s about 515 at this stage.

DE: Are all your services and support groups are they free?

CL: The support groups are free. If a person comes in and meets with me directly to get advocacy consultation, then that’s offered on a sliding scale. I also do many, many pro bono clients because it’s important to me.

We're trying to expand and improve the services we offer to make sure that we understand what people in the community need. I don’t want to make assumptions. So we’re trying to gather information through a survey to help us understand--are the things that we’re doing helping? What’s missing?

DE: Give me some examples that can help someone understand how they could come here and what the results would be?

CL: Sure. One is a program that we just got a grant for over the last year, it’s called Empowering Parent Partners. And the idea is to pair caregivers who just want someone to go with them to their meeting, and to support them and help them prepare for the process, have their questions in advance, kind of know what to expect.

One of the things that’s most difficult as you enter into a meeting like this, you’re often by yourself, or maybe there’s another person with you, and there are nine or so people on the other side of the table. It’s not a level playing field, and it can be extremely overwhelming and stressful.

So, the parent partner program is a free program that people can apply for and we match them with people who have received some training from Evanston CASE, and from the James B. Moran Center for Youth Advocacy, who have had their own experience with their own children in the past.

We’ve gotten tremendous feedback from parents about what a difference it’s made in their level of comfort and sense of what to do and what to expect. And that they could participate effectively in the conversations.

DE: What types of disabilities are parents are dealing with?

CL: The range is absolutely everything. From attention deficit disorder, ADHD, learning disabilities, autism spectrum disorders, developmental disorders, physical disabilities.

I would say the most common are ADHD, learning disabilities, and autism spectrum. The largest numbers of people are dealing with that sort of thing. And the other is emotional disabilities. That’s something that I think people struggle the most with in terms of getting what their kids need at school.

DE: Are parents coming to you because their children have already been diagnosed and placed in special ed? Or are you helping with the diagnosis and placement?

CL: Often people will come to us because they’ve heard from other parents, 'Hey you need to call so that you can find a space where you can get information.'

We’re wanting to do a better job in engaging folks who don’t already have an IEP, so that they can learn from others who’ve been through it kind of what to expect. But even if you’ve been doing this for years with your child, there’s always something new.

DE: And sometimes there’s too much information.

CL: Too much, right. And I find that really parents feel more comfortable when they hear something from another parent. You know people often post on the Facebook page, 'what do you know about this particular doctor, or this particular service, particular teacher, or school.'

And one of the services that’s available for anyone who’s interested is on our website we have a resources page. And so that’s a place people can go to find doctors, and psychiatrists, and therapists, and so on.

DE: How many families have you’ve served?

CL: More than 1,000, I would say. The issue is that in Evanston, both District 65 and 202, there are about 1,500 kids who have identified special needs and are receiving special education. And many more who aren’t on the radar, right?

We know for sure that we’re engaged with about 650 or so families. And so, we’re missing a lot of people.

DE: Let's talk about the topic that comes up in Evanston all the time, which is our divided community of white 'haves' and lower-income Black community, and immigrants. How do you reach those families?

CL: The thing that concerns me, and has for many years, is that there’s inequity in the special ed system in terms of resource hoarding. You know, that there are the families with privilege, and attorneys, and so forth, who can have more power, more leeway, more influence in getting things. And people who do not have, they just do not have the same experience.

And that’s why it’s so important, in my view, for parents to have information so that they can be more empowered more influential in those meetings and interactions with teachers--or anybody who deals with their child at school.

I worry a lot about the way in which Black and brown boys in particular are viewed in the school systems, in terms of if they’re having any kind of challenges, it’s viewed through a behavioral lens first. And that there is a disciplinary reaction first.

And that there may be no further investigation of what else might be going on.

Does this student have a learning challenge? Is there emotional challenge? When you have [Black] kids that are pigeonholed in a certain way because of behavior, there’s data that shows even from third grade that that puts them at risk, right [for the school to prison pipeline].

So many kids who are involved in the juvenile justice system are kids who have either unidentified disabilities or are underserved in this way. So it’s extremely concerning to us as an organization.

I’m trying to create bridges with organizations and individuals who already are connected with and serving the African American and Latinx communities. I don’t want to be the privileged white lady coming in and, you know, asserting what I think. That isn’t appropriate and it isn’t who I am.

I'm working with folks at Fleetwood-Jourdain Community Center, folks at Family Focus Evanston, Curt's Cafe. It’s absolutely critical. There shouldn’t be a situation where some are more equipped than others. Just no reason for it.

DE: You know a few weeks ago, maybe a month ago now, at one of the elementary schools they called the police on a 6-year-old kid.

CL: Yes.

DE: I wrote about that. And one of the school board members emailed me and asked, 'Does it make any difference to you that it’s a school resource officer?' And I said, if he’s in uniform, and he has handcuffs on his belt and a gun, and he’s coming to 'calm' a 6-year-old, it makes absolutely no difference to me what you call that person.

CL: That’s right. And if a child has had interactions with police officers in their community and there’s a sense that these are not necessarily safe people, that having a person be responsible for calming a student who is in uniform like that, it just makes no sense. It really doesn’t.

I’m sure these are kind and caring people. They want to do the right thing. They want to be helpful, but their training guides them in a certain way. I don’t know the absolute details of what happened in that situation, but anybody in their right mind would say that was wrong.

DE: Tell me what you do, for example, if somebody has a child with ADD?

CL: I think that if it’s a situation where kids are being treated punitively or that their behaviors that are related to their disability, related to impulsivity, if those things are treated as behavior problem, then they’re missing the point.

And so, if a parent has had an experience in which their kid is getting in trouble a lot, that the school is calling them a lot, that the teacher’s complaining that the student is misbehaving, he’s lazy, he’s non-compliant. All of those in my mind are red flags. Because kids, their behavior is communication. So it isn’t about being reactive to behavior, it’s about understanding it.

That’s where all those other layers come into play. That’s one of the primary problems that we see is that when there is a misunderstanding or lack of understanding on the part of the teachers and staff about what the child is presenting when they come to the school.

Same with a learning disability. There are some kids, I mean, if you can imagine looking around and feeling like other kids are getting something more easily than you are, and the frustration that that would create for you.

And the ways in which you might express that discomfort.

Whether it’s, 'I’m not doing that work,' or 'I’m walking out of the classroom,' or 'I know if I behave in a certain way I’m going to get to go home.'

There needs to be an understanding of where the behavior is coming from. It can’t just be assumptions about race or assumptions about, you know, income, or anything else. It should be about what is the child trying to communicate. That's true with any disability at all.

The other is often when a student is behind, when the parents get these test scores and they’re very confusing and hard to understand, and they’re like 'What does it really mean about my kid?' And when should I be concerned?

It’s hard for parents to get to a place where they’re going to say, 'I’m worried about my child and I think you should evaluate them to see why are they behind.'

I think it’s a scary thing for parents to do and many people want to resist that idea. It’s understandable.

DE: When a child has issues at school, do you find that it’s mostly the parents who initiate talking to teachers and the principal? Or do you find that it’s the teachers and principals who reach out?

CL: More often it's the former because I think the schools are overwhelmed. I think that they react to the squeaky wheel.

Certainly there are circumstances where they’ll reach out and say, 'You know, I really think we ought to take a look at this.' But in my experience, it’s about parents being concerned and bringing it up. And that’s why it’s so important for parents to know how to do that.

DE: That brings us all the way around to the more privilege you have, and the more income you have, and more free time you have as a parent, the easier it is to access, to talk to people. The less you have of that if you don’t speak the language, have three jobs--

CL: Or if you’re single parenting. How hard it is to juggle all those things. To get to the school for a meeting when you’re trying to work, when you have multiple kids. And that the schools are not always as accommodating as they should be. And yet they scratch their heads and say, 'Well, why aren’t these parents more engaged?' Without really an understanding of the barriers.

DE: Another big issue is so many of our kids, Black kids, are not going to schools in their neighborhoods.

CL: Yes.

DE: And so, their parents aren’t comfortable going to the schools that they themselves went to and didn’t feel good at them.

CL: Right. There’s a lot of history that people don’t understand. And that’s why it’s so dangerous to make assumptions about people. The more that people make an effort to reach out, to understand, to have maybe uncomfortable conversations, to not be afraid to do that. It’s hard.

But when it comes to educating our children, there’s so many things that are complex about it, that require understanding and information to be able to appropriately educate a child and provide them with what they need.

In my view, this particular area--navigating the special ed system--either when you’re in it or when you think you should be in it, it’s a very complicated area of the law. There are many, many rights parents have that they don’t know that they have.

DE: How do you think in general Evanston’s schools do in the case of special ed?

CL: They’re better than Chicago. There may be some North Shore suburbs that do a better job. I think we have a we have a wide range of needs in this community. And our school system is big compared to say, a Wilmette. And so there can be inconsistencies in the different schools in terms of how well kids are served. So, I wouldn’t say that Evanston is terrible.

DE: But they're not a shining beacon --

CL: And yet they could be. And that’s another piece of what we do as an organization. We try to be a watchdog and we try to push for improvements and we try to give them feedback when we think they’re not doing something right.

DE: Anything else that I haven’t asked you?

CL: I guess the other thing I would mention is that we're also engaged with the City of Evanston. They’ve turned to us to help them with looking at how to make their summer camps more inclusive.

The difficulty is that you, again, have parents who are privileged, who can afford to pay for private camps, specialized camps that may address a particular disability even. And people who are reliant on the city services, right? And so, if you need to use city summer camp and your child has a special need where they really should have someone with them, someone whose got their eyes on them and who understands what that child needs in order to be successful at camp, those things are critical. So we’ve engaged with the City about how they can make improvements in that way.

DE: And what about your survey?

CL: Even if we were to be able to get a handful of people who could give us feedback, it would be enormously helpful.