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.

Bending the Arc of Disability History Toward Rights, Freedom, Social Justice, and Belonging

Presented by Allan Bergman

Section 4. Values and the Federal AT Act and Transition

Allan Bergman explains that transition is a journey, not a place or a program. In 2004, transition, as defined in both IDEA and the Vocational Rehabilitation Act; should be based on the student's strengths, preferences, and interests; and transition planning should involve a large group of people who will support the student. Mr. Bergman then describes the impact of the US Supreme Court decision in Endrew F. v. Douglas County School District – that students with disabilities receive a quality education that provides equal opportunities for academic achievement … A "merely more than de minimis" benefit is not enough. The number one predictor of employment as an adult is paid work experiences during the school years. Assistive technology and the right to assistive technology are described, and Mr. Bergman quotes, "For people without disabilities, technology makes things easier. For people with disabilities, technology makes things possible."

And let's move to technology. I mentioned the Act earlier. This was passed in 1988. And states get grants to be able to see that technology and view each child, adult, and older adults, so this is across the age span, to equal access to opportunity achieved through assistive technology.

And we define it in the law. Any item, piece of equipment or product, whether acquired commercially, modified, or customized, used to increase, maintain, or improve functional capabilities of individuals with disabilities. Includes accessibility adaptations in the workplace. And the same definition is now in the Tech Act, the Developmental Disabilities Assistance and Bill of Rights Act, Individuals with Disabilities Education Act, and Rehabilitation Act. And states can add it to their Medicaid Home and Community Based Waivers, and some have.

Now, what's fascinating about this in our field is this is not on the radar screen most of the time. So, it's one of many things that I try to make a case for.

And I'm going to give you an example of someone that I have great respect for in the employment world. And I've met with this person many times over the years. And one time she said, "It's time for our annual meeting, can we go meet at this Target store?" Sure, so we go out there, we're sitting having a cup of coffee. See that guy over in lane seven? Okay, so I'm watching this gentleman cashier in lane seven. Social, seems fine, seems to move the merchandise well. One time showed somebody how to put their credit card in, one time looked like he made change pretty okay, seemed very pleasant. So, I waited and I said, "Okay, what am I missing?"

And the person says to me, "He's about to get fired."

I said, "I beg your pardon? Looks like a superb employee to me from over here."

And she says back to me, "Well, his problem is at break time."

And they have staggered breaks in the cashier lanes at most stores. So, when he goes on break, he gets caught up with the games in the room, they have a break room, he loses track of time, and then they have to come remind him that he has to come back 'cause until he comes back to seven, the person at eight or nine can't take their break.

I said, "Oh, what are you gonna do about that?"

"Well, what I'm thinking is bringing back a job coach and maybe bringing in a behavior analyst."

Now, by my age, I think you can tell I'm not a techie, but I know enough to be dangerous and I helped pass this law. So, I said, "Come with me." We go to the jewelry department because, again, I know they're not allowed to have their phones with them, that's a no-no.

And I look in the jewelry case, and it looks like a watch with an alarm on it, $39.95. And I said, "I think this will solve the problem. You'll have to figure out how to use it with him or the employer or whatever."

And here's the part I want to share with you. She looked at me like I was God. It was not on her radar screen because human service professionals think the only answer is more human service professionals or paraprofessionals. We don't think about the role of assistive technology and devices. And this was a cheap thing.

So, I said, "If you have to procure it based on what you're telling me, he'll be fired. Here's my gift, let me know how it turns out."

So, I didn't hear from her. A month later, I called and I said, "So, tell me what happened."

"Oh," she said, "Oh, within two days, that thing worked like a charm. We got it set up, he loves it, whatever."

I said, "Great, so he didn't get fired?"

She said, "Oh no, it's better than that. He was promoted to assistant of customer service."

Okay, he was going to get fired because he didn't have an alarm clock. That's real, and that's only three years ago, not 20 years ago.

And I share it with all of us to think technology, whether it's the simple stuff, all the apps that can be put on phones today. Everybody's got a phone, everybody wants to have an iPhone. Get just a plain regular phone, it's okay. But all this kind of technology that enhances people's ability to be in control of their own lives helps your self-esteem, and it also reduces costs.

Another one, I'm not going to spend a lot of time on it, but I'm sure some of you have seen some of the smart homes and some of the homes that are being built today for people with some pretty significant physical disabilities.

Well, I saw a video recently that took that one step further. Some of you are probably familiar with Alexa, and you can tell Alexa to do things with whatever is in your house. I didn't know about it until last year when we bought a new house and my son-in-law put it in for us.

I watched this gentleman using a wheelchair in his home on a video who didn't have a lot of personal assistance during the day. And all of a sudden, he says sitting in his chair, "Alexa, turn on the television, Channel 7." Whoop, up comes Channel 7. He didn't like it, "Alexa, change it to Channel 9."

Now, I want you to think about that. Self-determination, he's in control. He didn't like the first one. He didn't have to say, "Oh Joe, personal assistant, would you go change it again or do this or whatever," he's in charge.

How many hours of reduced dependency cost and what have we done for his self-esteem with Alexa on top of some of the other smart home stuff in his house? We have got to understand what this can do for people with all types of disabilities. It's not a luxury as IBM wrote here, I love it, nice, this is 30 years old, "For people without disability, technology makes things easier. For people with disabilities, technology makes things possible." Yes, raise those expectations. What is possible that can be done with technology rather than another human being or two human beings? There's a win-win all the way around.

And then the Coleman Center has put out the rights of people with cognitive disabilities and all of this stuff about all types, not just DD or intellectual disability, and it just goes on and on. And you can probably access it yourself, but here it is, "Promote self-determination, meaningful major aspects of life, education, health promotion, employment, recreation.""

How many people now do their own blood pressure, check their own diabetes at home, right? Why can't people with disabilities learn to do that as well? They can and they should. So, there's a lot to do and we've just gotta make our commitment. This was from 2013 at the Coleman Institute and we're not doing it yet 'cause it's not on people's screen, we don't train it enough, and the Tech Act states need to do that better.

Okay, here's that presumptive eligibility we talked about earlier with Voc Rehab. And this is the exact language that got amended in 1992.

No more that the counselor looks at you and says, "Hmm, I don't think you're feasible."

Okay, and this is the law, "Individuals with disabilities, including those with the most severe disabilities, are generally presumed to be capable of engaging in gainful employment, and individualized services have to be provided, and they must be provided to get gainful employment in integrated settings."

So, it isn't gainful employment in a crew, it isn't gainful employment in a sheltered workshop.

All right, and then here is the definition of how you can get around it if you can. Okay, presumed you can benefit unless the state can have clear and convincing evidence.

Clear and convincing evidence is not an IQ score, it's not a maladaptive behavior score, it's not a DSM mental health diagnosis, it's not a physical diagnosis, it's not a sensory diagnosis.

It has to be something that would stand up in a civil court of law demonstrating that we have tried and we have been unable to assist John Doe, Jane Doe, Mary, Maria, whoever it is in getting employment.

And I would say today with Supported Employment, customized employment, individual placement and support for people with serious mental illness, and self-employment, the answer to that question, 99.9%, I'll allow 1/10th of 1% will be you messed up and you didn't create the right opportunity.

There might be somebody once in a while we can't make it work for, but that's okay.

And then, again, look at this, this is in the regulations. What is a VR outcome? And look at that language, ladies and gentlemen, from the DD Act to Special Ed now invoke rehab, strengths, resources, priorities, concerns, abilities, capabilities, interests, and informed choice. And we'll come back to that.

So, I want you to see the impact that this DD Act and its core outcomes and values has permeated into Special Education and Vocational Rehabilitation, and soon you will see it also in Medicaid.

That is magnificent because we're approaching total alignment where we can't say, "Well, this agency says this and this agency says that."

And they even went further to define informed choice because as I told you with that pre-admission screening well, you've been doing this all your life, what would you like to do? That's not informed choice. Read this, this is in regulation.

Most rehab counselors have never read it, I'm sorry to tell you. "Informing each applicant through appropriate modes of communication." Okay, so they've gotta be able to understand what you're saying. "Exercise informed choice, including availability of support services for individuals with cognitive disabilities who require assistance in exercising informed choice throughout the rehabilitation process."

If you've never been given choice, how would you know? If you only know X and you've never done Y and Z, how would you know whether you like Y or Z? And that's true of any of us.

And again, personal example, I try to practice what I preach. As I mentioned earlier, my stepdaughter, Mindy, has some pretty complex disabilities. And a number of years ago, we were getting ready to go to a family celebratory event. I don't remember if it was somebody's wedding or something.

So, my wife goes out of her way to make sure that Mindy and my daughter Dina dress well, they don't dress like the label unfortunately goes with it.

So, we were out shopping on a weekend at a big department store, and Jan is out there looking at these beaded tops for Mindy. And I don't know what impulse got to me, but I did it 'cause I'm an old psychologist by training. And I said, "Stop, I want Mindy to pick out which one she wants." And she looked at me like, "What?"

And this is Saturday in a department store, I cleared the counter and I said, "What I want you to do is pick out the same top so the style doesn't confuse her, but in three different colors." Okay, so she got a red, a hot pink, and sort of a turquoise, I mean all very pretty sequiny kind of tops. Mindy is standing to my right."

And I have to wait 'cause it takes a while to process the cue. And then, she's gazing and whatever. And again, fine motor not good, but she pounds down on the one over on this side and it was the hot pink one. Jan said, "Okay." And I said, "No, no, no, old psychologist, you gotta do three trials." And I wish I had a camera. So, second I rearranged them.

Same exact verbal prompt, "Mindy, please pick out the top that you like." So, again she scans and the hot pink had been moved over here, so used her left hand pounds down on the hot pink, at which point Jan said, "Now?" And I said, "No, we gotta do a third one." So, I rearranged them, and here's the killer. Again, remember she had that terrible label of profound whatever. I looked at her and I said, "Mindy, please pick out the top that you want." Pause, she then looked at me, and if she could have spoken would've said, "What's your problem, dummy? I've already told you twice," and she picked out the hot pink.

But here's the moral to the story. I said to Jan, "Go with her, go buy it." Bought it, put it in the bag, she carried it out with one of the biggest smiles I have ever seen. That's choice, ladies and gentlemen. She chose the color of what she wanted. And I don't know if Jan would've picked that one or one of the others, and she probably would've said, "Okay," but she was in charge. That's self-determination, and we have to respect it and create the opportunity for that to happen.

In a department store on a Saturday, not the best place, but it worked. Okay, and since then more things obviously have evolved about choice in her life. So, here's a philosophical quote, you all can read this at your leisure when you look at the slides, but we open and shut doors by choices. We have done a terrible job of shutting doors to people with disabilities. It's time we open the doors.

And here's data to back it up, I'm sorry to say, National Core Indicators. I hope some of you are familiar with this. This is done by the state DD Directors and Human Service Research Institute, collected by the Institute on Community Integration at the University of Mass Boston, all federally funded.

This was looking at a bunch of people's adult support plans. And as you can see, 85% didn't have a paid job. It's a little better now, but not much. They then, the outside interviewers, went in and just said, "Would you like a job?" Of the 85% who didn't have one, okay, almost half said they want one. Not bad, that's not enough choice, but it was a quick question.

Then they looked at their written plans. Of the 47% who wanted a job, 70% had no job goal in their individual support plan, why? Because the case manager service coordinator didn't ask 'cause there was no expectation. Who's got the problem? We have got to raise the expectations, change the floor of the culture. It's just stuck on what that file says or that label or that diagnosis, and you don't even ask.

So, we need to just figure out, and that brings us to supported decision making. We're not gonna talk a lot about it, it's emerging now, but it really started back with the UN Convention on the Rights of People with Disabilities. The legal capacity as a right, guardianship is very restrictive. Guardianship is a synonym for incompetency in almost all states. And we're beginning to see it move away, we need to do a much better job of moving out of it.

And this is again giving people control in their lives with support. And the example I will give to you that I learned from Jonathan Martinez, the attorney who helped create all this stuff, is how many of us have a financial advisor to help us plan our retirement or our investments or whatever? Is it 'cause we're stupid? 'Cause I can't read a financial sheet? No, but I'm not expert in it, I need somebody to give me support, but I'll still make the decision.

And in the old days, how many of us used to use travel agents when we were gonna go abroad particularly or multi-state? You know, where's a good hotel? Where's a good cruise line, whatever? Okay, because they're expert at it and they give me support, but I'm still in control. That's a very simplistic way to look at supported decision making.

But we need the person to be able to make the decision with enough information. So, we just need to keep going. It's not a game, it's for real. And we need to get people to understand it for what it is and build decision making skills. And the more we build, the more people are gonna be confident and then they're gonna start to be a little more assertive. Well, that's okay, nothing wrong with that. Get you a lot of places. So, we just need to keep pushing this.

And a great place is in transition in those IEP meetings where the student begins to explore and say what they want to do when they grow up, and try stuff. How many of us tried different summer jobs when we were in high school? (gasps) Not what I thought it was gonna be. How many of us went to college and said, "Oh, I think I'm gonna study this," and after the (gasps) that's not what I thought, I'm changing majors, right?" But somehow people with disabilities don't get these options to choose to make a mistake. The dignity of risk. Oh my God. Oh no, heaven forbid. So, self-determination, again this is research findings now. People need to be in charge, and it ends up with much better outcomes. And self-determination is just another way to look at it and people are better off.

So, now here we go again for the transition kids, no different than the school law, the Voc Rehab law says, "All students with disabilities, including those with significant and most significant, presumed to be eligible for VR unless there's clear and convincing evidence." How many students do you know between 14 and 21 in your school, your school district with disabilities who have not been referred to Voc Rehab? So, we've gotta be working on that. And here again, Carolyn and her technical circular says, "The highest standard in our civil system high degree of certainty, clear means unequivocal." As I said before, it's not just looking at the person, or a form, or an IQ score, or an assessment. Assessments tend to be very negative because you're comparing somebody to somebody they don't know, and that's not fair, it's totally unfair.

We even defined significant disability in the Rehab Act. One or more functional capabilities in these areas can be required to have multiple services over an extended period. Okay, so here's the other one people don't know. People who get SSI or SSDI are presumed eligible, they don't have to go through eligibility determination because Social Security has said you have a significant disability that impairs your ability to be employed, otherwise you wouldn't get SSI or SSDI, so they don't have to do another assessment again.

All right, and then for the data, because we need that too, Bob Chimera is an economist PhD at Kent State, and I met him years ago and I said, "So, were you determined to make this work?" And he said, "Wait a minute, I'm a scientist, I'm an economist. The numbers were gonna be the numbers. As it turns out, they're quite good."

So, what we'll see here is he was looking at if you start at 14 rather than 16 'cause the law is permissive, you must start by 16, but you can start at 14 on a transition IEP. Look at these differences. This is on autism spectrum. We'll have another one on intellectual disability by starting two years earlier and take the percentages and make it people. 81 kids had employment versus 59, that's 22 more children. The numbers go down because of the recession, but you can still see a massive percentage increase by starting earlier. Raise the expectation, let them try some volunteering, let them get out and do some internships, practice stuff, summer work, whatever it might be.

And here, same for intellectual disability.

Look at the difference, 74 kids versus 58. That's 16 more kids with intellectual disabilities who had employment by the time they got out of school by starting two years earlier. Why isn't this information at every state board of education, every local school board saying, "You're gonna look great in the community, you're gonna have better outcomes, not just how many kids go to college, how many other things happen to all these kids?"

And then, this is a wonderful graphic that I found, and I would love to give credit, but I don't know where I found it, there was no name on it. And you could spend an hour studying it, but you will have it in the slides. Coordinated supports and collaborative partnerships achieve successful post-secondary outcome. But the key word here is individualized access to services and supports and alignment of best practices.

So, and again, first one there, expectations of competitive employment, it's right there. Okay, so I'm not gonna go through all of these, but this is a wonderful graphic. And this is the workforce stuff that we talked about earlier. Remember, I spoke about bipartisanship? I wanna talk about it here.

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This project was supported, in part by grant number 2301MNSCDD-02, 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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