The trend to mainstream children, the role of the paraprofessional, the misuse of SSI, attitudes about the potential of children with disabilities

Jacobson

One thing I wonder about, and maybe you could comment on it, because you go out and you do the same things. Are you seeing more kids who are more mainstreamed?

McQuade

There are more. The positive side is these are kids who are getting out who might have been kept on home instruction. That's a positive thing.

Jacobson

But are you seeing kids like you were or kids who are more severely--

McQuade

Both. Some of the kids I've seen have severe physical disabilities and probably have some mental retardation. Other kids may just have learning disabilities. Now, they could be very severe, or they could be moderate. Then you see some kids, it's just a physical disability. They're using a chair. I believe every child, whatever you can do--I'm not talking about if it takes you an hour to tie the lace on your shoe, that this is how the hour should be spent. Get velcro. But in terms of doing the things--because, the reality of life is, if you're very, very bright, and you have wonderful skills, you could be very severely disabled, and you will get hired, and the technology will be provided for you, because you're going to offer something. If you're average, and you're going to have average skills, and most people are average, disabled or nondisabled, when you go out, there's no law that says you have to hire the most disabled interviewee that comes into your office for the job. It's not affirmative action.

It seems to me what we want to do--and people have different interests and different skills--that you want to make sure that the person is as independent as they can be, so that what they can do for themselves they do. It's sort of like, to me, you want the person for their personal life not to have to always be paying for people to help you in things that you could have done for yourself. I think what's happening, what I see out there, especially for kids where you see somebody pushing them: get a power chair! What do you need somebody to push you?! You don't get privacy. You get these symbiotic relationships where for the para, they have got employment. Usually they're

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hiring local people and everything, so they have employment. For the person, they have somebody doing all this stuff for them. To me, it's like the para should be able to be shared with a number of people who need the assistance.

We had a woman, when I was in high school, there was one class I had to go to where there were stairs. It was an old school with a new building connected to it. I had my braces and crutches, but I needed somebody to pull the wheelchair up. I walked up the stairs so I could go to this class. We had a para. The para did that. If you're at lunch, and you couldn't carry your tray--and I can't carry trays most times--the para would carry the tray.

Jacobson

We didn't call them "paras." We called them aides.

McQuade

We probably did, too. Now they're called paraprofessionals, but they were called aides. So there was this one woman, and there were about three of us who might need some help on something like that. What I see is that the kids--here you're in an integrated environment and you should be having all the things we talked about [in terms of ] why we wanted integration. You interact with other kids your own age. How much do you interact with this person there, with these kids your own age? How much do you get to socialize with the kids, you know, the social aspects of school. You still don't get the extracurricular activities.

Jacobson

I remember when I went to school, and I couldn't write that well. So, I would have the teacher ask a student to make a carbon copy. That's how you not only got the notes, but you got to interact. It was an icebreaker.

McQuade

Yes, because the person gets to know you. I question how much these kids get to interact who could. When you meet the spunky kids who are ready to go out there--I'll tell you another--this is a very disheartening story.

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McQuade

As I started to tell the story: A colleague of mine, he uses a wheelchair, and he was doing a bus demonstration. This one girl, she was saying something like, "Well, I don't need to do this." He said to her--I believe it was him talking--he says--they were talking about what are you going to do when you get out of school. She says, "I'm going to watch TV. I'm going to stay on SSI and watch TV." This is the goal. This is like, to me, it's like the intention was to supplement. When they took the aged, disabled, and blind off welfare and they gave SSI--if you had never worked, you aren't entitled to social security--

Jacobson

That was--

McQuade

It was '72. We worked on stuff like that in DIA. Here's the downside. It's no different than what happened with the welfare program, which at first was meant for people as a temporary thing, like in the Depression, and then later on for people who came upon hard times or something. It wasn't supposed to be a way of life. What I'm seeing, and I hear this from some of the teachers I know because you can get SSI for your disabled child, what happens is a lot of times a parent wants them to get their education, to be in

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the programs. When it comes time for them to go to work, they don't want that. They'll have them go through voc rehab. They'll try to place them--"No, no."

Jacobson

Why?

McQuade

Because they know that they will eventually lose their SSI check, and the family becomes dependent upon the money. For the person, what often happens is it's like a welfare--it's a dependency mentality. "Why do I have to work?" In our society, somehow it's not getting communicated to these kids through school, or anything else, that people who are capable of supporting themselves do so in our society, and it's not like anyone is saying to them, "Hey, you know, what do you mean you're going to stay on SSI? There's no reason for you to be on SSI." No one's saying, "Your SSI will be cut off at this particular point." So, their view is--

Jacobson

But they also get Medicaid and in-home support.

McQuade

Right. The Medicaid part is really important unless--and I know there's been some changes to how people, when they go to work, the insurance of the company won't cover pre-existing conditions. The Medicaid part is really important, but the downside of what's happening is that the family, first of all, wants all the programs, but they don't really believe that their child, in many cases, can or should work. They get used to having that income.

When you go to work, you may not get that same income; you may lose your job. There's all of these concerns and worries. Not all of this is because the family is a bad family. It's your attitude about what your disabled child should be expected to do and what they can do. It's also--most of society still doesn't see that we should have the same responsibilities as anyone else. It hasn't permeated enough of the levels in our society. It really hasn't. If you sat home and collected a check, no one's going to say, "Hey, that Denise sure is a bum. See we should be out working." If you weren't in the wheelchair, and you're just sitting on welfare, people would want you burnt at the stake. "She's not working, and I have to go to work each day?" I really think the intention was good to get the Medicaid to the people, but I really think that giving money is not a good--other than giving money for things that are disability-related that the family can't afford.

I basically believe in national health for everybody; that nobody should be without their basic health needs met, but I think what happens, the family sort of in many cases--I think in a lot of cases, the family doesn't think about the future. When you're not there, what's going to happen. They don't think about you could earn more money. You have to (1) believe that the person is capable of doing these things and (2) believe that they should do these things, and then see to it that they do whatever they can. I'm not talking about the person who would never be able to earn a living wage. And SSI will allow you to keep SSI until your income, including deductions for a disability related work expense, until you are no longer eligible for one dollar of SSI, that is how the program worked when I was working for BCID [Brooklyn Center for Independent Living]. You can argue about how much SSI there should be and what should be the level of income before you lose anything.

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But it's a problem. I'm not saying all the students, because I've certainly encountered over the years when I worked in independent living and otherwise, kids that have the same expectations they're going to go out and do. You also have people, a lot of times, who are from other cultures, where there's nothing for the disabled person to do. There may not be enough employment for nondisabled people, and so those expectations aren't there. It's not getting communicated enough, I think, at least from what I'm seeing.