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Providing information, education, and training to build knowledge, develop skills, and change attitudes that will lead to increased independence, productivity, self determination, integration and inclusion (IPSII) for people with developmental disabilities and their families.

An Interview with Dr. Lou Brown

The wrongness of institutions and at what cost

Produced in 1987
Click the CC button to view captioning

Ed Skarnulis: Isn't it true, Lou, that the really powerful voice is not so much the unions or the Chamber of Commerce but the parents of the people, the voice of the retarded? They're the ones that have flooded the legislature with letters and have a firm belief, a sincere belief that their kids belong in institutions and do better in institutions.

Dr. Lou Brown: What's happening is we're seeing an aging out population. I mean, they're getting older, the people in institutions. I mean, we have the Public Law 94-142 that we give kids services and education. We have in-home family support systems. We have... Anybody you can find in an institution, we can find somebody that's more disabled in the community. People used to believe that, "Well, the really disabled are going to have to go into institutions." That's not the case at all. That's not the case at all.

So because of a whole lot of demonstrations, a whole lot of efforts by a whole lot of people, most people in the world now know that you don't really need, technologically or economically, you don't need institutions, right? Now, but you still have these people in there. You still have... We used to have about 350,000 people in the mid '60s after the Kennedy money came in. And then we started chipping away, and chipping away, and chipping away. Now, the latest figures are a little bit lower than 100,000. We're a country of 240 million people and we have 100,000 people in institutions for people who are retarded. Now that is, statistically and numerically, an insignificant thing. Now, plus, we have in my state, my institution in Madison, it costs $47,500. In your state, it costs about $55,000-60,000 a year to keep a person in there. And people are starting to say now, "That's a lot of money. That's a heck of a lot of money per person, per year, per life." Because you don't get any better in these places. In fact, you get worse.

And so we're saying, well, the people who want their kids in institutions are, they're not people with younger kids. They don't really have the option. Most states, not all states, but most states have admission policies against that. And most people say, who are going to get people out, "Let's get the youngest kids out first." And that's part of the political compromise process too. And so you have these groups of people across the country, and they are concerned about what's going to happen to their children when they die. And their other concern, legitimate concerns, I mean, I recognize that they're legitimate concerns, and so they're fighting like heck to keep their kids in the institutions. And I'm sorry about that, but I think they're wrong. I mean, I want them to be happy. I know that their kid's been there for 30 years and they want to be able to die and have them there. I understand that. I'm sorry about that, but I think it's wrong.

Seems to me if you had your kid in an institution ward for 30 years, before you die you'd want them... you want to have them see sunset, float down the river, cross a street, ride a bus, go to a concert, play in a park, and catch a cold. I mean, that's my view of it. It's not they've been there so long, let them die there. It's they've been there long enough, let them live someplace else for a while.

The problem is, when people get emotional, they start talking in dichotomies. It's either an institution ward or getting raped on a back street off Times Square. They don't think that. They don't say, "Well no, no, that's not what we're talking about." That's what you're talking about, but it's not what I'm talking about.

I'm not talking about dumping people. I'm talking about coming up with an individualized habilitation plan for that person, live in a decent place, get good services during the day, have a chance to experience their community. That's what we're talking about. So I try not to use the word "understand". I don't want to use the word understand, because they're not my kids and I don't understand. It's hard to use that word. But I recognize that there, you know some of the terrible conflicts, the boxes these people are in, but also I'm saying that, golly, think if you were those people. Wouldn't you just want to do something gracious, something colorful, something a little warm and sensitive, decent and compassionate, just a short, just before you go? That's what I want for them.

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