Regular Lives for Families with Children with Disabilities
Interview with Kathie Snow
Produced by Minnesota Governor's Council on Developmental Disabilities
The Challenge of Services vs. Inclusion
Kathie Snow: I think the challenges are for us to think about what do we value? I travel around a lot, and I live in Colorado, travel around the country a lot doing presentations. And a friend of mine who works in early intervention in the state of Colorado at a very high state level, but he's a parent of a child with a disability so he has that personal experience, but he works in early intervention. And he called me a while back, and he said, "Kathie," he says, "I'm getting very concerned." He says, "I'm seeing some stuff in Colorado and," he said, "I want to know if you're seeing it across the country or if this is somehow unique to our state." And what he was seeing was, he said, "I have parents whose children receive early intervention services." And he says, "The parents are more concerned about services than they are about inclusion." And I said, "Nope, I'm seeing that across the country."
So I think some of the challenges are that we, as family members, we somehow value services because that's… once we get hooked into the service system when our children are diagnosed, and say they're getting early intervention services or maybe our children are not diagnosed until later and then we get into special ed services but, at some point along the line, if we get hooked into the service system in some way. Of course, it's their job. I mean, the people who work in the services, it's their job to promote their services. I mean it is their job to provide those services, I mean, by law.
The problem is that we, as family members, do not have to accept those services. A lot of parents think oh, if the state has to provide them, the parents also think I must accept them. I meet parents all the time that say, "I didn't want to send my child to special ed preschool but I thought I had to just because I had an IEP meeting." It's like, no, you can say no.
As parents and family members, and people with disabilities themselves, children and adults, we need to know that we can say no. We can say, "No, I don't want that service. No thank you." We can say yes to some, no to some. Yes to some, no to some other. We want part of it but not all of it. And, by law, we can do that. We can have… it's not all or nothing. Unfortunately, people think that sometimes. They think, well if I say no to this, that means I'm not going to get anything.
I actually did have the head of a human service agency in New Hampshire, several years ago, called me and it was when my book was out in the first edition and the way it was formed, it was a very thick book. And he called me one day and he said, "I bought… I ordered your book, I bought it. I read it in one night." I mean he said, "I stayed up all night." And I said, "Wow, I wrote the book, and I don't think I could read it in one night," because it was very thick, and very dense. And he said, "I want you to come up here and I want you to help teach my staff." And his staff did everything from early intervention to adult services. He said, "I want you to help teach my staff how to assist people with disabilities without making them dependent on the system." That's a real fine line to walk. And I really admired him for wanting his staff to think that way.
And so when I was working, I went up there and I worked with his different departments, and I was working with early intervention. And they said, "Kathie, well, what will happen? If we tell parents, you know, we can provide physical therapy and occupational therapy and that kind of stuff, but really there's more stuff out in the community that might meet their needs, they'll accuse us." I mean this is a sorry state of affairs. "They'll accuse us of shirking our responsibility. They'll threaten to sue us that we're not giving their children their entitlements." And I said, "Oh, I have no doubt about that." And that's one of the problems.
One of the challenges is that we, as family members, we adopt what I call the entitlement mentality. And so they tell us oh, your child is… by law they must tell us your child is entitled to this, your child is entitled to that, and then we… I know, been there, done that. I mean, I don't ever accuse parents of anything that I haven't done in my own life, okay? That's right, I want more for my son.
And so this old entitlement mentality, we want stuff that our kids are entitled to even if it's not what's going to get us where we want our kids to be. It's like, we're entitled to it, so give it to me. Even if it's leading us down this path to segregation and second class citizenship.
I said "So you're going to make a list of what is in your community. You're going to make a list of the natural supports and generic services that already exist in your community - park and rec, library, YMCA, museums, Boys and Girls, Scouts. "I mean there's all kinds of things that would be helpful to our children." And I said, "You're going to say, 'Okay, here's what,' and get a piece of paper and on one side you're going to say, 'Here's a list of what our agency can offer you, PT, OT, speech, whatever, and here's what's in the community.' And the list is going to be very long." And I said, "Just show them, which would you like?" And I said, "Most people are going to say, 'Wow, there's really more in my community, so that's what I want'."