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

Updated: Jul 21, 2020

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?