It’s no surprise that Candace Cortiella, a respected national expert on the educational rights of children with learning disabilities, believes so strongly in the power of parents as grassroots advocates. That’s where her own history as an advocate began.

In 1990, when her daughter was seven years old and recently identified with learning disabilities (LD), Cortiella had just quit an “extraordinarily demanding” 15-year career as a senior executive with an upscale department store chain. While she was looking for another job, she decided to take some time to “find out what this whole special education thing was about.” It turned out to be a life-altering decision.

About that same time, her school district had decided to radically change the way it delivered special education services. Previously, many kids with learning disabilities had been taught in segregated, self-contained classrooms. Without notifying or consulting parents, the district switched to serving all elementary-age kids with LD in regular education classrooms. Not surprisingly, as Cortiella recalls, “all hell broke loose.” And, as a result, she jumped into the advocacy arena with both feet.

Recently, we interviewed Cortiella, who is the founding director of the Advocacy Institute and writes periodic legislative updates for our website. We talked with her about the path she took from being an advocate for her own child with LD to advocating for the right to a “free and appropriate public education” for all children with LD, as guaranteed under the federal Individuals with Disabilities Education Act (IDEA).

How did you learn the ropes for being an advocate for kids with learning disabilities?

When you live in the Washington [D.C.] area, and you start getting involved with people who are advocates, they are very often also advocates at the federal level because of where we live. So it was kind of a quick track for me because the people who became my mentors, who were the leaders in advocacy at the community level, were the same folks who were doing advocacy at the federal level. One day we were talking about my little kid in my little school, and the next day they were saying, “OK, we’re all going to Congress tomorrow, and you’re coming along.”

First the veteran advocates dragged me to Richmond to talk with state education officials and policy makers, and then to testify before the school board and to talk to school board members. I was really, to a great extent, reliant on the advice I was getting from the seasoned advocates in my community. They knew the law inside and out, and they knew the district inside and out. But when it came to having somebody go up and testify before the school board, they couldn’t do it because they didn’t have any kids in the system any longer. They forced me into a high-profile position that I have to say I wasn’t totally comfortable with because I was still so green. But that’s kind of the way you figure it out. Trial by fire, I think it’s called!

I went to conferences, I went to workshops, and I would spend hours talking with these mothers who had been around for years. I was very fortunate that they would give me those hours, explaining to me what the law said, and how good implementation of the law looked at the local level. I would spend time with my school people, as well. I spent time with our specialists at the state level; they were very helpful. Then, I became very active on advisory panels, both at the local level and then at the state level.

What’s an example of the type of advocacy work you’ve been involved in that you feel made a difference?

In IDEA, there is a requirement that every state have a state advisory panel made up primarily of parents of kids with disabilities. In 1996, when we were getting ready to do the 1997 IDEA reauthorization, one of the issues that many of the parent representatives of the parent advisory panels around the country were beginning to surface was the fact that a lot of the panels had become dominated by professionals and service providers. So — and this is a good example of the interplay between local and state level advocacy and the federal level — many of us got together and at the federal level advocated for language in IDEA, when it was reauthorized in 1997, that required state panels to be populated with a majority of parents of kids served under IDEA, or people with disabilities who had been served under IDEA. We got that “special rule” added to the ’97 IDEA reauthorization.

So this sounds like a situation where veteran parent advocates were in a position to help empower less experienced parents?

There is always a tremendous need for the experience and the wisdom and the knowledge and the organizational memory that older parents bring to this situation. There’s also the need for the energy and the passion and the vitality of the younger parents who are just beginning to work their way through the maze. But sometimes parents whose kids are currently in the system are so embroiled in issues with their own kid that it’s either difficult or impossible for them to do a lot of advocacy on a big scale. So you kind of need both to get the job accomplished well.

Could you comment on what’s at stake in the current IDEA reauthorization process in the U.S. Congress?

Quite honestly, I’m so distressed by what’s currently going on that I think my judgment is being clouded a little bit. Because I consider the current situation to be extraordinarily painful. And, in fact, I spent some time recently with several people who worked for or closely with the U.S. Department of Education under the Clinton administration. They all commented that this is the first time since the law (IDEA) was enacted that we are taking a step backward.

It’s so unfortunate because, up until now, every time we’ve reauthorized IDEA, it has been improved, and improved through our knowledge and whatever we’ve learned from one reauthorization to the next. Whereas now what we’re doing is taking out stuff that we put in because we knew it would work — because it was research-based — now we’re taking it out. Given this, we have to try our hardest, to protect all the good that’s in the current law. The less we engage in advocacy right now, the worse conditions [for people with disabilities] are going to be in the end.

What would your advice be to parents of children with learning disabilities who are currently in the public school system?

Well, one of the best pieces of advice I ever got was from someone who is still my biggest mentor [Jamie Ruppmann, public policy director of TASH, an organization that advocates for people with severe disabilities]: to take a business approach to managing my daughter’s education and her services under IDEA. And I think that’s good advice for any parent; you really do have to take a business approach to it. You have to kind of divorce yourself from the emotion and come to the management of the case, essentially, as if you’re doing it for a business. Because the school district does do this as a business; this is their business. To put yourself in a comparable position, you have to approach your advocacy as a business.

It’s horribly tough. A couple of weeks ago I was part of a team of folks who did a full-day training for all of the due process hearing officers for the state of Virginia on learning disabilities. My job was to give all of them the parent perspective on all of this. One of the attorneys — all hearing officers in Virginia are attorneys — asked me, “Is there anything I can do to diffuse the anger that these parents have?” And I said, “No, because that’s why they’ve decided to go to a due process hearing; they wouldn’t be there if they weren’t angry.”

Any words of wisdom about the state of LD advocacy right now?

Just that we need more of it. A lot more of it. And quick. Over the years there’s been a real push towards trying to remove the stigma of having a disability label. And that’s fine. I’m all for kids and parents not feeling bad about having to be labeled in order to get help. But the downside to that is that by removing that stigma, and making it sort of comfortable for parents to have their kid identified under this category and receive support of special education services, we’ve lost the advocacy of a lot of those parents. Too many of them don’t realize that their services are federally mandated. If you have an IEP (Individualized Education Program) and your child is getting special education services, then your kid is being covered by this law. So, I feel that if you’re going to take services from the law, then you need to give back something. And the giving back is that advocacy — sending that email, writing that letter, making that phone call when the need arises. Otherwise, you’re not doing your job.