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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.

Positive Behavior Supports

Mike Mayer

What are national trends in the first part of the 21st Century?

Mike Mayer: What I'm seeing as trends in the United States right now is that more and more states are embracing positive behavior supports as being the only legitimate intervention, methodologies. We're seeing more and more states saying that they will not allow or use punishment of any kind in their systems. More and more states are saying that the only kind of restraint that is permissible is a hands-on in the event of an imminent emergency and that it's unplanned. They have to have planned other kinds of interventions, but if somebody were to run in front of a car or they were about to stick their hand on a hot stove that they could, you know, intervene to prevent that from happening, but it is to be of briefest duration possible, etcetera, etcetera.

It wasn't that long ago that many states allowed for planned physical restraints, even aversives, and there are still a few states that do allow aversives, but those are diminishing, and the ones that are, there's a program in Massachusetts, for instance, and they're under constant scrutiny from the Department of Justice, from the Department of Education, etcetera, coming in and questioning their methodologies and approaches.

We're also seeing some pretty significant shifts in the way the federal government is looking at what is considered appropriate and necessary supports for individuals who have intellectual disabilities as well as behavioral challenges. As a result of that, those standards are continuing to tighten up in terms of what's an acceptable approach to support somebody, but also the expectation that those supports would be very active. That, rather than a passive approach or rather than a maintenance approach, which so many organizations and states got very comfortable with, it's like, well, we got them to this point, we don't really need to push it, we don't need to change anything because they're not doing this one bad thing that they were doing, rather than trying to figure out how to enhance the lifestyle, trying to figure out how to engage the individual in a meaningful life in any significant way. And so it became in many places, it became maintenance of effort, you know, just keep on doing what we've been doing and don't rock the boat.

And quite honestly, what we're discovering is, is that those situations tend to actually cause more problems in the long run because that behavior may have stopped; they may not be doing that, but now they've got four or five other new things that they are doing because they're bored silly, because they're lonely, because they're frustrated, because they're confused, because they don't ever get to do anything. I know that if I can't go outside because I'm not feeling well or whatever for three or four days, I wind up with cabin fever. And I can only imagine what it's like for some people who have had to sit in the same home for four or five years not being allowed to go out into the com… because if they go out in the community, they might have a behavior. Well, I don't know about you, but I see a lot of adults who don't have intellectual disabilities having behaviors all the time. And, you know, quite honestly, if you're not having a behavior, it means you're dead.

The problem isn't the behavior. The problem is how do we help shape that behavior so that it's an appropriate response to the demands of the environment. And removing the demands of the environment that are natural, normal, typical—whatever you want to call it—is not the logical way to help people have a full life in the community, or anywhere else for that matter.

One of the other things that's a national trend, that I think is not just emerging but I think it is rapidly growing, is the idea that we're going to move away from specialized treatment homes or facilities. We're going to take all the people who have behavior problems and we're going to put them all in one place. We're going to take all the people who have autism and put them in all in one place. Because what we found out is that, when we take all those people who have behavior problems and put them all in one place, is that they behave just like people who go to prison. They tend to not learn new, better, helpful things, and they tend to play off of each other's negative behaviors, and they tend to learn each other's negative behaviors rather than learn how to assimilate and learn how to adapt and adjust to the normal kinds of things.

So what we're seeing is the move, a pretty dramatic move, to the concept of universal support and enhanced lifestyles and things along those lines where we try and figure out how do we help people have happy, healthy, normal lives living with people that they actually want to live with, not people that they've been forced to live with. So we're seeing an application of choice, we're seeing a fundamental shift.

In the old days we, you know, we used to have physician-directed care and then we went to team-directed care, and we're moving now very much into the individual having that concept of applied self-determination. What is it that I need to accomplish? What is it that I was born to do? What skills, talents, abilities do I have that need to be facilitated or allowed to manifest?

And what we're finding is, as we do those things and as we work on finding out what their fundamental motivations are, and as we reduce the elements of tension and resistance in their lives, tension meaning things that you want to do that I don't want you to do; and things on the resistance side is, you know, I want you to do something that you don't want to do. Well, those things create stress and stress creates problems. And as we reduce the tension and resistance and as we increase self-determination, as we validate and legitimize the essential motivations of human life, as we acknowledge that people have real feelings and those matter, and we need to take care of those things, what we're seeing is, is that there's a whole, there's a shift in how we provide services, where we can provide services, and what can happen as a result of those kinds of things. And we're shifting from a service mindset of something I do to you to a support mindset of something I do with you or for you because you've asked for assistance in becoming more effective in your life in this area.

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The GCDD is funded under the provisions of P.L. 106-402. The federal law also provides funding to the Minnesota Disability Law Center, the state Protection and Advocacy System, and to the Institute on Community Integration, the state University Center for Excellence. The Minnesota network of programs works to increase the IPSII of people with developmental disabilities and families into community life.

This project was supported, in part by grant number 2001MNSCDD-03, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy.

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