The formation of an independent living center in New York, the impact of Willowbrook
Jacobson
I want to move along to the independent living center. How did that come about?
McQuade
In our state it came about I believe through the efforts of Fred Francis. Fred was from SOFEDUP. He worked with DIA, a good
friend of Pat Figueroa's. They really are responsible for a lot of the access, if not all of the access, that came about in
the city university system because they organized disabled students there.
Jacobson
Is--?
McQuade
Fred lives upstate. Fred is retired, I believe from OVR/VESID. He became a rehab counselor, and he went into the state vocational
agency, and he moved up into administration. There was also a fellow, O'Connor was his last name, and I'm blanking on his
first name [Greg], but Denise Figueroa or Pat would remember him. They really worked to get the federal money into our state--I
believe it's the part B centers--and to get some state--it was a pilot project, let me put it that way. They used some state
money, and I think they also went for some of the part B money. I think it was around then. From the federal government. The
independent living money from the voc rehab act for independent living. Some of the centers only had state money, no federal
money, and some centers had both. What they did was, they went around to organizations, grass root organizations around the
state to encourage people to apply to become a center. It was different than in California where you had these activists pushing
this.
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The disability activists, we weren't working to have this happen; I found out about this happening. We knew about Berkeley
CIL [Center for Independent Living] and all of that. But in terms of our state, I don't know that there was this big grass
roots movement here pushing for--Fred knew about it, he went, and they got different organizations in various locales in the
state. I think originally there were nine centers. CIDNY [Center for Independent Living of the Disabled of New York] had the
home attendant referral program, that was really what CIDNY was doing, and it was Pat Figueroa and the late Annemarie Tully--they
were working on that. I don't know that Pat had any other staff.
Jacobson
What about Bobbi?
McQuade
Bobbi came on later, though. I don't mean it was a huge amount later. I think Bobbi came on when he got the independent living
money.
At any rate, what you had was these different organizations who were approached to see did they want to become an independent
living center. The program I worked for was Independent Living for the Handicapped. It grew out of the Muscular Dystrophy
Recreation League. These were parents of children, very young children in most cases, who had muscular dystrophy, who broke
basically with Jerry Lewis in that they wanted to raise money to do things for their children now. Research was great, they
were not opposed to research. But they saw a need for things to be there for their kids at the moment. From that, as the adults
grew up, there was more involvement of these disabled adults, and new people came in who weren't necessarily there from the
very beginning.
Jacobson
I want to stop for a minute. You touched on before that the grassroots activists weren't--
McQuade
Remember, I'm just graduating from college with my master's. I'm involved with the disability students' organization and with
the section 504 advisory group at NYU, but--
Jacobson
Okay. Now, my question is that CIL in California began in 1972. Were the disabled activists in New York aware that this was
happening?
McQuade
Yes. In fact, some of these people came to New York. Judy had some of these people come over.
Jacobson
Did they talk about DIA?
McQuade
Anything that happened in DIA after I left, I really wouldn't have kept close tabs on. What I was dealing on that particular
point was more related to access at the college or issues at the college. The big push was Califano signing the 504 regs.
The issues that I really was aware of: Califano, getting him to sign the 504 regs. That was '77. The other big thing was that
demonstration on transportation that Phyllis organized, I believe, for ACCD. Definitely, I knew 503; I knew 504. That was
from when I was involved with DIA, I had copies of the regs on that. Basically that's what I recall. It doesn't mean there
weren't more things going on, but those were the two things that I really recall there was a lot of activity around.
Ask your question, because maybe you're going in a different direction.
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Jacobson
I was just wondering where people put their energy. It seems like in New York people focused on issues as compared with California
in Berkeley, where the reason that CIL began was that the people organized on campus. Then when they graduated they realized
that unless they got their act together they were asked to go back home or back to institutions. So, I'm just wondering what
happened here.
McQuade
I think here there was the whole Willowbrook thing. The scandal with Willowbrook, what that did was, it created a whole protection
and advocacy system. If you were in an institution, there were programs to get you out. There was work being done. That's
something else, you just spurred a memory in my mind. When we were involved with DIA, the early years with Judy and everything,
we met parents who had kids who had mental retardation or severe learning disabilities or autism or whatever, who needed respite
care. That Wolf Wolfsenburger's conference--the Policy in Action conference--some of the issues that were in there had to
do with respite care, support services in the communities so people didn't get institutionalized, and services out there for
people coming out. But Willowbrook, that was a big issue in terms of people involved with developmental disabilities.
DIA's position always supported independence and people making their own decisions, and as much support services as they would
need. Things aren't going on in a vacuum; there's a lot of different things. Where people put their energy kind of depended
upon what meant the most to you or to your organization. Since DIA is a multi-disability organization, I don't think it focused
necessarily just on one thing, but certainly on things with physical access, a lot at that time. That's some of the major
things that were going on. Home care was certainly--attendant care was an issue. It became even a hotter issue when the city
decided to contract out the service. Then there was a whole big thing about who would provide the service to--the "self-directing"
was the term that was used--disabled. I think it's a misnomer, and I think I said that earlier on, because you could be self-directing
but not have the time or the connections to do all the research, to do all the groundwork to get your attendant, and you might
want to call an agency and have an attendant sent to you, but you're capable and will be directing that attendant. Or you
could be totally self-directing in the sense that you want to advertise for the person, hire the person, train the person,
do the whole thing. That caused a little bit of a division in the community, because Pat was doing the referral service, and
many of these people used it, but now that the city was going to give contracts out, his agency was one of the places that
was going to seek the contract. Now, the city had different requirements.
So what happened was there were two hundred people--Marilyn Saviola could detail this for you--who wanted to be doing what
they were always doing and just wanted a financial conduit. They didn't want to keep the payroll records, they didn't want
to run the agency. They would have a board. They wanted a fiscal conduit to give them the money to do it, and somebody would
write the checks and keep the records and everything, but they would register their people with the agency and take responsibility
for finding replacements and all the other things, and there would just be a list of people.
― [Tape 6, Side B] ―
McQuade
The point I did want to make on this is the growth of independent living in our state really came out of the efforts of Fred
Francis, Greg O'Connor. Later on, there were
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other staff as we grew who were added on. In our state, this was a pilot project. Fred Francis was well aware of what went
on in Berkeley and the benefits of it, and he really went around, and Greg, promoting to these grass roots organizations,
"Here's something that you could take on and go beyond what you're doing." In other words, have the systems advocacy, on top
of that, have services to help people live independently. It's the core services, peer counseling, it would have been housing
referral--
Jacobson
Attendant referral.
McQuade
It could be attendant referral. That didn't go that way in the city because of the whole effort on the part of the city to
contract out the service. New York City, I have to say, is one of the few places even in our state where you could get twenty-hour
care. There's been limits put on it. It's grown tremendously, and there's been tightening and limits put on it, but upstate
a lot of people were going into, and I assume still have to go into institutions because they can't get the level of care
that they need in the community.