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II. Independent Living, Disability Politics, CIDNY, and ICS

Consciousness of rights and options, limits of life at Goldwater Memorial Hospital

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Jacobson

Is there anything you want to add about what we talked about last time?

Saviola

I think I want to talk a little bit about what happened in Goldwater and at LIU in terms of it developing my consciousness as a person with a disability. You know, when I came back to Goldwater and they'd created this special unit, I had, for the first time, a peer group at Goldwater rather than one or two other people. But like a whole, maybe ten or fifteen people, who had similar aspirations who were beginning to become comfortable with our bodies Our consciousness was being raised about what our options and rights were. At the same time--.

Jacobson

Because of?

Saviola

I think many things. One, to strengthen the peer group, and having some small successes within the institution. I think the times--. It was the mid and late--it was the late sixties, and it was going on for all people at that time. And also, the militar--. You know, being militant on campus in terms of disability rights. I think all those factors kind of combine to help start giving me an identity as an activist, as someone who is powerful, as someone with others who could effectuate change. As opposed to being lucky enough, or entitled enough to get a change.

So I think at that point my whole thinking about what it was like and all, became very different. Who I was became identified. "I am a person with a disability," rather than, you know, "I'm not--." So that all came to help build my consciousness. Before, I never incorporated into my persona that I am a person with disability. The disability was something that happened to me, within the--even though I now let it define me, in part, it was the first time I didn't deny it as part of me, or pretend it wasn't there.

Jacobson

I see.

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Saviola

I think that was something significant. I also think that that's the time when I was leaving Goldwater, when I was trying to get into my own apartment, live independently, start a job, and begin my life in the community as an independent person and--[tape interruption] So, that all became part of it.

And a thought that occurred to me when I was thinking about our interview, something that always floored me was I remember at the time when I was ready to go to school, when I started to go to college and going out to school rather than using the telecommunication device. And when I was moving into my own apartment, people both in Goldwater--staff, some of the other residents, a lot of family and a lot of friends and acquaintances--all kept telling me how brave I was to be leaving and going out on my own. The thing was that I wasn't--scared--and the thing that floored me was, was that it was much scarier for me thinking about remaining the rest of my life in Goldwater than leaving the institution and living on my own. That to me, was the scary thing. Even though it was scary in the sense that it was something new and everything, it was terrifying for me to think of spending the rest of my life in Goldwater. People couldn't understand that.

Jacobson

Marilyn, when did it start to become scary? Because when you decided to live at Goldwater, it was where you wanted to be.

Saviola

I think it started to become scary when I realized I could do things I wanted to. That living in an accessible environment was not enough knowing that I could get an education, that I could potentially work, that I could have relationships and friends. And that I could say when I wanted what done.

Jacobson

Okay.

Saviola

You know, so--. You can decide when you want to get up, when you want to go to bed, what you want to eat and when you want to eat and will provide you with your personal care.

Jacobson

And you couldn't do that as a patient at Goldwater.

Saviola

No, not at Goldwater.

Jacobson

--as a resident?

Saviola

No. I mean, I could have only worked for a short period of time, I couldn't have earned a living, you know, a salary and stayed there. Getting back and forth, when I didn't have OVR to pay was an issue.

Jacobson

What about your relationship with your boyfriend. How was that seen by the staff?

Saviola

Well, most of the time when I was in Goldwater, the two people I was involved with, Bruce and then Roberto, a couple of other people--. I think they, you know--. Two of them, because of the severity of our disability, it wasn't a physical relationship. And then I had a couple other people who we would fool around with, and we had special areas in the hospital where we could go, you know, to have sex. And everyone knew it,

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but it was our area. I don't think--that most people who worked in Goldwater thought of us as sexual beings.

Jacobson

Everyone knew--.

Saviola

All of us who were going there to use it knew it.

Jacobson

What about the staff?

Saviola

Some of them knew. The administration didn't know. I mean, we had two areas in particular. One was the back area of one of the porches, so it was fine in the summer, but you couldn't see in. It got to the point where we would have to book time. Okay, well it's Sunday, you can have the three to four, and in the summer it was very funny. So everybody knew where you were going, what you had done, and whatever, and when your schedule was. And then we had keys to a couple of the offices. When there was more inclement weather, we would go inside. And, I don't think they knew about the keys to the office.

Everybody kind of knew about the C-11 porch, and that's what we were doing in our own time, one of the women fell out of the wheelchair, and then we had a big problem getting staff to help get her back in. Well, how did you fall? [laughter] So, I mean there were problems. But, I mean, you couldn't just decide to close your curtain and have someone--go to bed with someone right there. You had to be discreet. You have to comply with the schedule. Doesn't say much for spontaneity.

Jacobson

Did you get any type of sex education?

Saviola

No, no. Just what you got from each other.

Jacobson

Okay.

Saviola

And you were a great teacher.

Jacobson

Was?!

Saviola

[laughter]

Jacobson

Is there anything else?

Saviola

No, it was just that--. I think that was really the most defining time for me as an activist.

Mayor's Office of the Handicapped, 1971

Jacobson

You were involved in DIA, and we talked it about it last time--do you recollect if there was interaction between DIA and the Mayor's Office?

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Saviola

Yes, at that time, yes. At the initial time, DIA had been--I guess a relatively new organization--when Eunice Fiorito was appointed director of that office. And Eunice was an activist, and very involved in the disability rights movement in New York.

Jacobson

How did that office get started?

Saviola

It started under [Mayor John V.] Lindsay, if I remember correctly.

Jacobson

Okay.

Saviola

And it started--I'm not sure why, how or why. We were kind of all shocked that it came about. I remember that. And I remember thinking, "Now we've got it made, we're never going to have a problem again within the city." [laughter] And it actually was very good when Eunice was there.

Jacobson

It was 1971?

Saviola

Right. I think so, yes. So, she was great. I mean, she would--we would know about things that were going on before they happened, so that we would know where to apply pressure, what to do. And it worked very well. Unfortunately, most of the directors since Eunice have not been advocates in any way, shape, or form.

Jacobson

Is it still in operation?

Saviola

At the present time, under this administration, the director is an able-bodied woman who has no people working with her who are disabled that we know of, or maybe a few, who are totally unresponsive to the community.

Jacobson

What was the purpose of that office?

Saviola

It was started at first to advise the mayor and other city agencies on issues that were going on in the city--decisions, regulations, programs, services that would affect people with disabilities so that things could be that would include people with disabilities into the activities of the city. It was also supposed to do some stuff in terms of--it ran a housing information bank, was supposed to help with housing placement, plus it was supposed to do information and referral, and some constituent services. But it spun all the way from that. God only knows what it does now.

Jacobson

You doubt now it does--

Saviola

Yes, it does nothing. [laughter]

Jacobson

Who is the director?

Saviola

Kathryn Paradiso, I think, or something like that. And she's an able bodied woman who was a nurse. Prior to her was Mark Leeds, and I don't know if you know Mark?

Jacobson

No.

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Saviola

--who was not much better. And he had been director for a while, and then when Ann Emerman came in, she took over. She .

Jacobson

Ann Emerman?

Saviola

Yes, she used to be--did you know Ann? She was an activist from the community. Before her was Carol Roberson.

Jacobson

No.

Saviola

She's a woman with a disability who was director--it was then called MOH, Mayor's Office of the Handicapped. When [David] Dinkins became mayor, Ann Emerman was the director and it became the Mayor's Office of People with Disabilities [MOPD]. And it took on a huge responsibility. We were in the process of trying to get legislation that would amend the New York City building codes. This was called Local Law 58, was passed. New York City building code demanded accessibility in all new construction. And, if there was significant renovation, it had to be accessible. So the building code was stronger than the federal standards.

So, it was the Mayor's Office, the MOPD's job in part to oversee any requests for a waiver to the buildings code to see if it really needed to be granted. And Carol Roberson had a lot to do with making sure that the Department of Building complied with the law and only gave waivers when they were absolutely necessary. She was the director, previous to that was Mark Leeds. And they both had a lot to do in getting Local Law 58 passed. Because when I look back on it, over the last three or four administrations, that's the only significant thing that I can point to that that office did--is the passage of Local Law 58.

Jacobson

And you feel that when Eunice was director it was more active?

Saviola

Yes, I think it was a better administration. I think that that was the most powerful time of the office.

Jacobson

What were some of the things that she was able to do?

Saviola

Well, one of the things, if I remember correctly, was that's when the oil embargo was on, and people with disabilities needed to get gasoline when they needed it because there was no public transportation that was accessible. When they were rationing gas, you could only get gas every other day--depending if you had an even or odd last number on your license plate. We were able to work with her, so that people were exempt who were disabled. So you could get gas, and also ambulettes [accessible transport vans]--because we were concerned that so many people with disabilities require ambulettes for medical services and for educational and vocational training programs. So that they needed access to gas all the time, so her office helped in doing that.

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Involvement with Disabled In Action

Jacobson

What about DIA, were you always involved with DIA?

Saviola

To different extents, in different times. At one point I was president, you know.

Jacobson

When were you president?

Saviola

In the eighties, in the late seventies or early eighties, I really don't remember. I think it was the late seventies, middle-late seventies.

Jacobson

I never knew that. What was it like at that time?

Saviola

It had a lot of people who were really activists who were involved in a lot of issues and it also broadened the thing for civil rights, not just to include disability rights but other things. Also, it was something with gay and lesbian groups, sometimes we'd coalesce, and we worked with them. It was right after Angela had been president, that I became president--Angela Thompson.

Jacobson

Really? I thought Angela was president early on.

Saviola

Well, it was something like that. I was right around her and Denise [McQuade], I think I came right after Denise. Between--I think the three of us were in some sequence, but I don't remember the exact sequence.

Jacobson

I remember I was still living in New York when Angela died.

Saviola

Yes. By the way, her son and husband came to visit me last year.

Jacobson

Really!

Saviola

Yes, I'll tell about that after.

Jacobson

Okay. So, who were some of the activists at that point?

Saviola

Kip Watson. Remember Wiggy? Yavina?

Jacobson

I remember the name.

Saviola

She was an activist. Emily? I forgot Emily's last name, Kip's wife--Emily. Carolyn Bethka. Carr Massi, Anna Fay, Phyllis Rubenfeld, Michael and Frieda [Zames].

Jacobson

Michael--.

Saviola

--Imperiali, Michael Dickman, Howard Silverman, Jerry and Ellen Nuzzi. It was Ellen Kaufman then.

Jacobson

At one point DIA tried to have chapters in the boroughs, and I heard that it was not that successful.

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Saviola

It never went, but there were other chapters. One in [New] Jersey, and one still in Rochester.

Jacobson

Really?

Saviola

Syracuse, sorry, Syracuse, that is still active. A woman by the name of Sally Johnston is the head of the DIA group there. And then they have a group in Jersey. Do you remember Ina [White?] and Sandy Pinkerton?

Jacobson

I remember Sandy.

Saviola

And Albert, I forgot Albert's last name.

Jacobson

What ever happened to Sandy?

Saviola

Sandy Pinkerton worked for the state education department for a couple years. And then developed all these medical problems with pain and stuff so she stopped working.

Jacobson

In New Jersey?

Saviola

Yes, so she hasn't worked in, I would say, fifteen or twenty years easy. I actually ran into her at the disability expo this year. She got her PhD, and she does some consulting.

Jacobson

Wow! I would love to see her.

Saviola

We should have called her. She would have come in because she has a van.

Jacobson

Is the DIA still operating?

Saviola

Yes, yes. And their biggest problem has been getting new young blood in. The guy who's president right now, a guy by the name of Anthony Trocchia, who's in, I think, his mid- to late thirties. So they finally got a few younger people. Nadina is very involved, she's involved in Adaptive New York.

Jacobson

Nadina?

Saviola

Nadina LaSpina, yes.

Jacobson

What's their focus now?

Saviola

Okay, it's what? Their focus now is--I don't know, I think there's some Olmstead stuff and de-institutionalization stuff. They're doing some lawsuits. One with, I think, the Dwayne Reeds [chain pharmacies] or the Rite Aids, one of those stores, because they put so much stock in the aisles, even though the stores are accessible you can't get through if you use a wheelchair or scooter. We worked together on some issues with the subway and transit access. But, you remember DIA and EPVA [East Paralyzed Veterans Association] were the entities that sued New York City to get the accessible buses.

Jacobson

Yes, yes. What--. Do you know anything about ACCD?

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Saviola

Not--. I remember when we formed it. I remember when we were in Washington in that room in the hotel.

Jacobson

American Coalition--

Saviola

--of Citizens with Disabilities.

Jacobson

Yes.

Saviola

When Eunice was there it was great. And then Frank Bowe and everything--. Phyllis took over and there was all kinds of political stuff. Remember when Phyllis Rubenfeld took over?

Jacobson

Yes.

Saviola

And then it kind of just crumbled.

Move to independent living

Jacobson

Okay. I want to go back to when you moved out of Goldwater, how did that happen?

Saviola

Well, it really was a whole team effort, actually. I worked with an OT, a social worker, a rehab counselor, and Dr. Alba to pull everything together. People came out, we checked the apartment, they got our home care stuff in place, they let me work at Goldwater for six months and keep my salary, so I had money to buy furniture and pay security and rent.

Jacobson

Denise McQuade said you took over Judy's apartment.

Saviola

No, no, no. Judy was on a lower floor, I live on the 11th floor. We both lived there at the same time.

Jacobson

How did you manage finding attendants?

Saviola

Well, it was crazy at first, it was an absolute disaster.

Jacobson

Tell me.

Saviola

It was, at that time, the way they paid for it was they gave a two-part check to me and whoever was the attendant. Then I would have to cash the checks and pay the person. And the checks never came on time, they would be weeks and weeks late.

Jacobson

Were you under Medicaid?

Saviola

It was a Medicaid program under DAB, Disabled Aged and Blind services, which was part of public assistance . This was pre SSI [Suplemental Security Income]. I received survivors benefits from my father's Social Security until I started working.

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Jacobson

Okay.

Saviola

So that's how people were paid, that's independent contractors.

Jacobson

And this was seventy three--

Saviola

--three, until about '80, until it kicked over to the current system of the city contracting with not-for-profit organization to provide personal care services.

Jacobson

When did SSI--

Saviola

--SSI must have come in the mid seventies, in the mid to late seventies.

Jacobson

I feel like it was either seventy-three or four.

Saviola

It could have been '74, but when I started, this was all pre SSI. So, I had this employment agency who would send people, which turned out to be a disaster. The one thing I had done, is I had gotten to work for me a woman who was a nurse's aide at Goldwater, who had left Goldwater. So she was working for me. Remember Mary?

Jacobson

Mary.

Saviola

Yes, so Mary--. Fortunately for me, Mary was always able to cover for me when the workers from the agency didn't show up.

Jacobson

Did you need full-time--

Saviola

--yes, but at the time they weren't paying for two split shifts. So they would only pay for twenty-four hour care (sleep-in), which isn't fair. A person gets paid for like fourteen, fifteen, hours--as opposed to twenty-four hours--but has to work the twenty-four. Then, after about a year or so I found Muriel. Do you remember Muriel?

Jacobson

Yes.

Saviola

And I got her through an employment agency. And what she did, is she moved in, actually. So I gave her rent plus the salary she was getting. So, she stayed with me for twenty-one years until she died.

Jacobson

She died?

Saviola

She died in '95. She had cancer. She was almost seventy seven years old at that point. But she was still working nights, because it wasn't that strenuous for her. We became so close that we were family. It was, you know--. Until I got a secure thing, it was like days that no one would show up and I'd have to call Mary and Mary would come. Until Muriel moved in, and when Muriel came in things stabilized. What I would also do, since I had a large apartment and I had a van to get back and forth to work, I'd offer free rent in exchange for driving. So I have had some very good drivers and some very sick drivers, and some dishonest drivers.

Jacobson

Did they pay minimum wage?

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Saviola

At that time?

Jacobson

Yes.

Saviola

I don't remember what it was, because it wasn't consistent. We never did time sheets, all I knew is that you got x amount of money per week and you had to use it to pay for your personal care needs. But I don't remember what the minimum wage was, but I think they barely did.

Jacobson

You said that you called up an agency, what agency?

Saviola

It was an unemployment agency that did domestics. So, I figured that if they could do babysitting and domestic placements they may know someone who could do the job I needed. And I don't remember how I got the name, who gave me the name.

Jacobson

What was the name?

Saviola

I don't remember.

Jacobson

Okay. So that was in the early seventies?

Saviola

Yes, '73, '74.

Jacobson

Were you the only one you knew at the time that had to have twenty-four hour--

Saviola

I was the only one, I think, I knew at the time who had to have paid for twenty-four hours, as opposed to someone like Angie, who needed it but whose mom was there for the other time, and grandmother. And I got people like Bruce who needed it, but instead of using the money to have someone, at night he would pay roommates to do it. So I knew people who needed it but didn't work it through a paid PA [personal assistant]. They used informal supports or family.

Center for the Independence of the Disabled of New York, 1978-79

Jacobson

Okay. Let's talk about CIDNY [Center for the Independence of the Disabled of New York]. When and how did that come into being?

Saviola

CIDNY. How I got there or how CIDNY developed?

Jacobson

How CIDNY first developed.

Saviola

I guess it was in 1978 and '79 when, after the CIL in Berkeley was up and running and ready to be replicated our local VR [vocational rehabilitation] agency under the Rehab Act, under Title VII, of the '73 Rehab Act, were going to start ILCs [independent living centers]. And in New York State, they decided to fund CIDNY. It was the first, actually, to fund it through I&D money, innovation and development money. At the time, Fred Francis worked for VESID, which was then OVR. So, he knew about the

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activists in the city who wanted to start an Independent Living Center and he helped us get a grand from VESID for a local disability rights group in the city to get a grant.

Jacobson

Why did they call it VESID?

Saviola

Vocational, Educational Services for Individuals with Disabilities.

Jacobson

That's a mouthful. [laughter]

Saviola

Definitely. But, so--

Jacobson

Let me change the tape.

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Jacobson

Okay, now Fred Francis--.

Saviola

He was a friend of Pat Figueroa's, and they both went to Brooklyn College. So, when he knew that VESID was getting this RFP [request for proposal] together, he talked to Pat, "Okay, let's do this." And they went to NPF, National Paraplegic Foundation, or whatever it was called--you know which one I mean.

Jacobson

Yes.

Saviola

And they had to be the not-for-profit that sponsored it. Okay, so they did an RFP and CIDNY was given the grant. Anne Marie Tully worked there and then Bobbi [Linn] at first, and at first it was supposed to do home attendant referral, it had one specific task.

Jacobson

Who was the head of it?

Saviola

Pat Figueroa.

Jacobson

Okay.

Saviola

Yes, he was the head until he left in '83, and that's when I came in.

Jacobson

Now before CIDNY got started, what had you heard about CIL?

Saviola

That there was this program in California that was having people with disabilities control all the services they need so that people can live independently. Without having professionals administer the services.

Jacobson

So, was CIDNY trying to follow in their footsteps?

Saviola

Unfortunately, no.

Jacobson

Why not?

Saviola

Because I think that when CIDNY started, based on the funding source, they had so little money they could only do one or two things. So they identified home attendant

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referral and stuff like that, and only gradually grew to provide a full range of IL services including systems advocacy, housing, and stuff like that. And at that point, CIDNY was originally a federal center, because VESID had gotten the grant. Then New York State funded several independent living centers when the Brooklyn Center started, a couple of years after CIDNY. And they had gone from a group called the Independent Living for the Handicapped, which was a recreational group, which also started housing people with disabilities in the community. Because Mary Weinberg, whose son had muscular dystrophy--. So they'd fund congregate living, almost, where they would pair up one or two people with disabilities. So that group evolved into the Brooklyn Center. And I was on the board of the Brooklyn Center before I worked at CIDNY.

Jacobson

Did you know anything about the board of CIDNY?

Saviola

Not at that time, no.

Jacobson

Okay. You got money for the Brooklyn Center from the state?

Saviola

We didn't. CIDNY did it as an entity. But it was only at one time when some of the state funds were cut, CIDNY helped fund the Brooklyn Center for a very short period until the funding was restored.

From empowerment-based to crisis intervention

Jacobson

So, I'm thinking that CIDNY expanded its services.

Saviola

CIDNY expanded, you know, through the early eighties, and became a full service ILC. When I came in 1983, what I had done, is that a lot of the services were done by the phone. Very few were done in person. And I kind of said, "No, you've got to bring people in, you've got to do this ."

And I think that every ILC kind of develops an expertise or a niche, and I think that what developed while I was at CIDNY and under my leadership, was the expertise in community based home care services and health care. Which is something that ILCs hadn't touched. You know, inroads into the health care system.

We were so weary of the medical model and didn't want to be identified with it, that we didn't really start addressing access issues in health care until the mid or late eighties, because we didn't want that identification. It was much purer to fight for accessible transit or building codes than to talk about "Hey, how can woman in a wheelchair get a mammogram?" It became a different type of issue.

Jacobson

What was the population?

Saviola

The initial population was people with mobility and physical disabilities.

Jacobson

And it was cross-cultural?

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Saviola

Cross-cultural and cross-disability, we had people who--. Some people who were deaf, some people who were visually impaired, but the vast majority were people with physical disabilities.

Jacobson

Okay.

Saviola

--which changed drastically in the last eight to ten years. The population--we had more and more hearing impaired people, more and more people with mental health issues, and DD [developmentally disabled] issues, and learning disabilities, attention deficit, all kinds of mixed disabilities. And fewer and fewer people with physical disabilities.

And the people we had seen initially were people who came for a concrete service, "I need help getting my SSI, I need help getting an apartment, I need help winning a hearing." As opposed to people who then came in because they were homeless and had no place to live, or had no money, or were living in a four flight inaccessible apartment and their spouse or lover had left them. So, the Center became less about empowerment and more about crisis intervention, just because that's what was coming in, and that's what you had to respond to. And when we talk--.

This was not only a problem of New York, when we talked to directors all over the country, everyone was seeing the same thing. The population had changed, the needs had changed, it became more of a drop-in center, unfortunately.

Inability to sustain coalitions

Jacobson

How were you received by the disabled groups that already existed?

Saviola

When CIDNY came in?

Jacobson

Yes.

Saviola

Well, before I got there, we were all really excited about it--me included. Because finally we were going to have an ILC who was going to be responsive to community needs. But the centers were never supported in that way. In New York State, the centers had two very strong mandates, legislative mandates, to do direct services and systems advocacy. But they never funded you enough to do the systems advocacy. The vast majority of resources were directed into direct services.

So, I think CIDNY was very actively involved when we took over the transit authority, and so was the Brooklyn Center. They became the operational hubs, the people who organized it did the clerical support, the phones, the mailing, and stuff like that. But it wasn't sustained much after that. It was more episodic and need driven. So there wasn't a consistent coalition that the centers controlled and gave resources to. They had the resources that were able to support the grassroots groups like DIA. Unfortunately, that never came about.

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Jacobson

What about the groups that weren't grassroots, like United Cerebral Palsy and the Muscular Dystrophy Association?

Saviola

I think they saw us as, those groups, "People with disabilities, we'll let them survive." But they didn't give us the recognition of another professional organization, even though we were providing the same types of services they were. One of the things that CIDNY was most successful at doing when I was there was forming coalitions based on issues.

For instance, in the late eighties and early nineties, into the mid-nineties, actually, New York State has been seen as tremendously overspending on home care services. Many times the governor would propose cutbacks, that would cut the hours of home care people needed. So that they were going to cut down and cap the hours of services of people with disabilities. So you couldn't get continuous twelve hour or twenty-four hour care. And we formed coalitions between the activists, family members, providers, legal service lawyers, and labor unions to fight this, and effectively stopped it. I think that was one of the strongest things I was able to do when I was at CIDNY, was trying to form these coalitions.

But the disability rights movement in New York--I don't know how it is in the rest of the country--cannot sustain itself as an entity on a coalition basis. It can form, and react, and handle an issue like the oil embargo, or the gas prices, accessible transit, the cutbacks in home care. But you can't say that the ABC coalition has an office, regular members, a board of directors, and is in place to respond immediately.

Jacobson

The ABC, Architectural Barriers Committee?

Saviola

Yes, like that, you remember we had that organization.

Jacobson

Why can't disability rights groups do that?

Saviola

One reason is it's a very small group of people doing it. And anyone in the coalition who is not a member of that small group is already into ten other things and other groups they represent that may not be disability related. So you don't have the funding. There's no funding to keep that going. If you were able to fund an office, clerical support, and a program administrator, you may be able to do it. But you can't just, you know, keep it going. Now the ILCs, for the first time, this year, in New York State, tacked on monies to hire systems advocates, so let's see what happens with that.

Jacobson

To do what?

Saviola

To hire a systems advocate at each center.

Jacobson

Which is supposed to do--?

Saviola

Systems advocacy, systems change.

Jacobson

Okay. In the legal area?

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Saviola

In regulation, like, for example, Olmstead implementation. So you would have someone there whose job it was to work with New York city and state building codes. Now they're trying to water them down, and go to a national standard which is less than what the state has. Because the state requires 100 percent accessibility and adaptability in new construction. The federal code, or whatever it is, only requires 2 percent, so they're trying to get that passed. So these systems advocates could devote almost all these times to these issues. They don't have to do individual work with people.

Jacobson

So, before this, whenever something like that came up, it would be that you had to drop what you were doing?

Saviola

Yes.

Jacobson

And work on the crisis?

Saviola

Right.

Jacobson

It sounded like the ILCs operated in crisis mode most of the time.

Saviola

Yes, definitely, definitely.

Jacobson

You talked about the Brooklyn ILC, what about the Bronx?

Saviola

The Bronx? CIDNY was the actual sponsor, which had all been kind of done when I came in, and when I came in, Bobbi was transitioning out and going into the ILC. So we just kind of--our board was their board until they got set up. I was executive director of both, before Bobbi took over for us.

Jacobson

They were supposed to do what you did?

Saviola

Yes, originally they had thought about only doing different things. Like they were going to have a kitchen in a mock apartment where they would train people that had to live in the community. But that didn't work, the state said, "No, you have to provide a full range of IL services."

Jacobson

In CIDNY, for example, were there any training programs? Like at CIL in California there was the Independent Living Project, and what we did there was take people who were living in institutions and board and care facilities, and bring them in and teach them the whole gamut of how to live independently.

Saviola

We've always thought that one of the things I wanted to do at CIDNY is--we have a really strong consumer directed home care program in New York--to teach consumers how to hire, fire, and manage, and recruit their own workers. We were never able to get funding for it. It's one of the things we're going to be doing here.

Jacobson

Why do you think that was the problem?

Saviola

Because everything was reactive rather than proactive. You couldn't get funding. Most of the ILCs were not really good at getting funding for other projects. And the core funding was so bad that you didn't have the resources to get a developer or someone, or

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a strong enough administrative staff, that you'd get dedicated people to do the fund-raising program development. So there was never anyone, there was rarely someone who wasn't doing ten other things, to do grant writing to get a program like that funded. In the last couple years I was at CIDNY, and I became a pretty good grant writer. But I had to do everything else.

Connection with Ed Roberts

Jacobson

At that time, Judy Heumann left for California. Did she from time to time come back and advise?

Saviola

Judy, no.

Jacobson

There was no connection?

Saviola

Well, I would guess in about 1985--maybe mid-eighties--I developed a relationship with Ed Roberts. And Ed would come in and do some stuff periodically.

Jacobson

What did he do?

Saviola

He put us on to some developers who did help us get a Robert Wood Johnson grant. We spoke at a couple of conferences together. I did some visits with him to foundations for WID. We had talked about setting up an east coast WID, where it would operate out of CIDNY. But we just could never get it off the ground. Ed was spread too thin, and so was I, to do it.

Executive Director of Services at CIDNY, 1983-1998

Jacobson

When did you leave CIDNY?

Saviola

I left--okay, this is very interesting. I actually resigned from CIDNY in September of '98, and I started working January 4th of '99, here. We didn't have an office.

Jacobson

At the time you left, how big was your staff?

Saviola

Without the home attendant program, the personal assistant program, we had about--oh god, me, Glenda, Sylvia, Nat, Anthony, Gayle, Don, Matt, Phillip, Rhonda--about fourteen or fifteen people.

Jacobson

At that time, what were the services being--.

Saviola

We had a benefits advocate who did advocacy, we'd help with social security and Medicaid, Medicare, public assistance. We had a housing person, we had a deaf

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services coordinator who kind of did everything, we had a client assistance program. And we did some IL skills training.

Jacobson

What was the client assistance program?

Saviola

It was a program that was part of--what do you call it--a protection and advocacy program--where they would mediate and advocate between clients and applicants to VESID, and with the state vocational rehab agencies.

Jacobson

So, if they had problems--

Saviola

Right, if you couldn't get what you wanted, you were denied something or if you couldn't get along with your counselor. You know, trying to get a grad degree and they said they didn't do it, we could represent you through a fair hearing.

We also had several programs up where we were doing a thing on training different women with different types of disability to do breast self-exams. We developed a program with people who were visually impaired, using tactile boobs with little bumps, and you could train people how to do it on themselves. So we did it with deaf and hard of hearing people. We did a--running a program on the local community health center where we would do the access, bringing people in and knowing what they needed for disability related issues. So we were running that program as well. We were surveying sites for accessible mammography. So we were doing a lot on health care. We were also writing curriculums for working with--trying to work with hospitals to teach them how to work with people with disabilities when they're admitted. So we did a lot of stuff like that.

Jacobson

Did you get any help from any other professionals?

Saviola

Yes, we had excellent--. We had a professional advisory committee, it was quite awesome. It was set up for the thing. We got funded through United Hospital Fund to do that program. We had someone sitting on the--. We had--Debbie [Debra] Shabas was the neurologist who founded the IWD and who is now at Premier [The Women's Center at Premier HealthCare].

Jacobson

IWD?

Saviola

It's the Initiative for Women with Disabilities. It's now--. She's now at Premier. And Susan Wol, who--the gynecologist who worked there, who worked with us. She was--already had a woman, another doctor, who was a physiatrist with a disability who worked with kids. We had people who worked for the health and hospital--

Jacobson

What was her name?

Saviola

It'll come to me, she was at Rusk [Institute]. I can see her, it'll take me a minute but I'll think of her name. It'll come, it'll come--.

Jacobson

What about any input from UCP?

Saviola

UCP was involved in some of the housing coalitions we did.

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Jacobson

So, you left and--

Saviola

--I left, I formally ended my employment in December of '98, but I stayed in a physical space at CIDNY until April of '99, because our office space wasn't ready. I did mostly ICS work, but I ran the TBI program out of CIDNY in exchange for rent.

Jacobson

TBI?

Saviola

Yes, Traumatic Brain Injury program. I had gotten quite an expertise in working, in running groups, and we became a waiver provider. So I continued to do that while I was there.

Jacobson

What did you actually do? You ran groups for-?

Saviola

People who survived [brain injury]--I ran support and therapy counseling groups, which was very interesting. Because many of the people, particularly in our group, were people of very high functioning level, but gd severe memory deficits. And like for the first, I guess, two months, when everyone wanted to get know each other, every week they would have to tell their stories over again, until they learned each other. To learn and remember, it was very interesting, but it was a good support group.

Start of Independence Care System, 1995-96

Jacobson

Now when the Independence Care System came into being--can you describe it?

Saviola

ICS, Independence Care System--it really started, I would guess, in 1996, '95, around there. They got a Robert Wood Johnson grant.

Jacobson

What is a Robert Wood--?

Saviola

--Robert Wood Johnson Foundation gave a wad of money to different groups, and they got interested in disability issues, right? One of the things they did--. They funded the program that we did for influencing systems' change. That's where we worked with a community-based health center to try to make it accessible.

So, Rick Surpin, who was the founder and president of ICS, who I had worked with in many coalitions, came up with the idea of ICS, which would be care, coordination, and management for people with severe physical disabilities--on Medicaid, over twenty-one, living at first, initially, in the Bronx and Manhattan. The purpose would be two-fold. He had found a workers owned cooperative for home health aides, and wanted to find a source of jobs for workers. So that was one thing. The other thing was to help people coordinate care. The fact that people with disabilities-especially in a fee-for-service Medicaid system--did very little, had very little coordination of services. You got personal care, but you may not have medical care.

Jacobson

Where did they have to live independently?

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Saviola

In that community you could live with a family, you could live with a total of twenty-four hour personal assistance service, but you had to live in a non-institutional setting. We worked with several people to help get them out of nursing homes.

Jacobson

Okay. I'm going to put in a new tape.

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Jacobson

You were telling me about ICS.

Saviola

So, ICS came about--. The people with disabilities, especially if they had lots of different services, had no coordination or management so that usually you got health care, maybe here, maybe there, very little if any preventative health care. Most people were seen at hospital-based clinics where there wasn't any continuity of care because you would have a resident at that clinic for only six months, who was your doctor, and you rarely saw an attending [physician].

Also, if you had more than one doctor and they didn't talk to each other let alone you, you had problems getting wheelchair repair and proper equipment ordered. Equipment was ordered for people that couldn't use it because no one talked about what their lifestyle was in the community. Since Medicaid was moving to managed care, and eventually long-term managed care, we thought, let us come up with a model of service delivery that could do care management. So it helped foster independence, using as much consumer direction as possible.

So we had care teams, usually consisting of a social worker and a nurse, maybe just two social workers, or eventually maybe just a nurse, depending on a person's needs. And we would be assigned to people, and we would get to know them so that a person could use as much or as little support as--. We had people who were extremely medically fragile, who had huge decubiti, contractions, needed IV medication and antibiotics several times of day, nursing visits, and stuff, who had no equipment, no home care.

So we had to put all that in place. We have other people who work and don't need anything except periodically. If something goes wrong, they know that could call here and we could see that it gets done. "My wheelchair's not working." We have a wheelchair tech who'll go out and fix it. We have other people who have lots of social issues. We have one woman who has MS who has thirteen kids. You know, so she needs lots of support. We have other--younger people who are mothers and are disabled, and are getting very little help dealing with their children. We had one man who was a single father, who's raising his child, who is a brain injury survivor himself, whose kids has ADHD, you know.

Jacobson

AD--

Saviola

ADHD [Attention Deficit Hyperactivity Disorder]. And so we were able to put some home care services, some homemakers services in so that the kid could get the support he needed. You know, the father used to have to get up early in the morning to take the kid to the bus, and then was so exhausted he went back to sleep and until his kid came home, because he was doing everything. You know, so we have lots of people who

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need a lot, lots of people who need very little, and some people who only need help if something goes wrong.

We become the payer for Medicaid. We contract out and pay for the home care services, the therapies in the home, the durable medical equipment, the supplies and transportation. You don't pay for the medical services and stuff. People are allowed to bring their own networks in. If you have doctors you like, we'll work with them, if you have a home care worker that you want to work with, we'll work with that agency to work with you. So you have choice.

Jacobson

It sounds like an ideal program.

Saviola

I was, you know, the thing is--. People said, "Well, how can you leave an ILC and come to work for managed care?" And the reason I really did it was that I know it's going to happen, like it or not, so I wanted to have some input in how it would look. And also, I think that the people here are really open minded enough, and astute enough to know that people with disabilities are collaborating. You collaborate with rather than "do for." And they really struggle for that sometimes, but on the whole, you know, the--. Rick is a--I'm sorry, you'll meet Rick tomorrow-

Director of advocacy

Jacobson

--Rick is the president, and you are?

Saviola

The director of advocacy.

Jacobson

So, what exactly is your role?

Saviola

Well, I'm responsible for all member orientation. Whenever we get a new member, talking to him or her about the program, explaining to them what goes on, what their rights are, find out if there are any issues that are not being addressed. I do a lot of--if there's a problem or a complaint, I have to solve it, or I refer it and do it through a grievance procedure. And I work with them to try to resolve it, or see it through the process.

Jacobson

And this is a state funded--

Saviola

--Medicaid fund, it's a capitated program through Medicaid funds. But we also have a lot of grant money.

Jacobson

A "capitated"--

Saviola

--In other words, we get x amount of money per person, per month, to provide services for them.

Jacobson

Okay. Is it adequately--

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Saviola

No, but we've gotten more. It's still not what we should get. You know, we're trying to--. We just negotiated a better rate, but it's still not great, but it's going to--. Hopefully, as we show experientially that it costs more, we'll get more.

Jacobson

And you have foundation funding?

Saviola

Yes, Rick has been very good at getting foundation money, grant monies, investment money on top of that.

Jacobson

Okay.

Saviola

And, you know, one of the things that, for me, and I talk to people about this. I've talked to Anna and--. When I was at CIDNY, it was extremely difficult to get consumers to do advocacy, to get involved in the organization, to get involved in working on projects or whatever. And here, there's been a group--. We have about two hundred members right now. And I have a group, it started with one or two, maybe, now about twenty or so or more people who all want to be advocates, who I've gotten to go to meetings, served on different coalitions, come in and do stuff, make phone calls. We had someone meet with our new head of the city council committee on disability. And it's phenomenal, because to me, I don't understand why it would happen here, and not at an ILC. And I don't understand that.

Jacobson

Do you have any thought about that?

Saviola

I thought that maybe it's a--. I'm not sure, maybe because when people came to an ILC they were coming to a person with a disability who was a professional advocate, and that was their job to do advocacy. As opposed to here, our broader job is to care--care management. So maybe it's easier to assume the role of advocacy when you don't have to be an advocate with a--with a professional advocate, for lack of a better term, I don't know.

Jacobson

Well, I would also think that here, at ICS, the needs are addressed on all levels--home care, health care, wheelchair repair, and so they don't have to worry about how are they going to get their needs met to survive.

Saviola

Yes, that makes sense, the other--. I wanted to show you the newsletter. If you look at our newsletter, which is totally a member activity, you'll see a lot of articles which talk a little bit about, you know, "With the help of God," and with this, and a cure that comes with this--and then you see intermingled with this, a story about disability etiquette and how come we don't have curb cuts, or why is it such a problem that doctors don't talk to you, and we need to begin to do this.

So you start seeing the seeds of some real activism starting. It's very interesting, one of the articles one of the people wrote, and she was supposed to be talking about disability rights compared to someone who is "stricken" or is "suffering from." I said, "Hey you've got to--if you're really talking about how people refer to us, you have to look at how you refer to us." And people catching that and being able to grow. So that I look at a newsletter like this, and I see where a group of people are just burgeoning--activism is starting, it's really exciting to watch. You know, we've had a group of people come in who wanted to learn how to deal with elected officials. What do you do when you write

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a letter, what do you do when you visit an elected official, what do you want to get across?

Jacobson

Where are the people coming from?

Saviola

We thought we would get our biggest referrals from the ILC's and that has not happened. We get a majority of people--. We got some from the home care vendor agencies, some from hospitals, and a large number of people from word of mouth. People who know someone who is in the program and stuff like that. And we've done a lot of outreach. You saw the Abled newspaper, I gave you a copy, we advertise in that regularly. And, like, we're going to have this series, a rec series, in the next couple of-.

Jacobson

Who puts out the Abled newspaper?

Saviola

It's an independent newspaper, it's not agency based.

Jacobson

Oh, really.

Saviola

Yes, it's quite a good paper.

Jacobson

And who funds it?

Saviola

I don't know where they got their core funding, but they have a lot of ads now. They get some private money, but I'm not sure where.

Jacobson

Okay, going back, what type of classes, you said that you're having a series?

Saviola

We're having a lecture series. The first three lecture series are going to be--one this month is going to be on disability culture. Nadina, who teaches down at the New School, is going to do that. In August, Frieda's going to come in and give a reading and talk about her book on the disability rights movement.

Jacobson

Frieda Zames?

Saviola

Yes, she published a book called The Disability Rights Movement, Charity to Confrontation, and in September Dr. Debbie Shabas and Susan Wolfe, who's a gynecologist, are going to talk on access to women's health care. We'll use that as a marketing and PR, as well as an information thing for our members.

Jacobson

Marilyn, it seem to me that ICS is getting a real reception from the people in the disability rights community, is that true?

Saviola

I think we were leery. I think my coming here helped, in the sense that, you know, I was here so it must be something. We have several members on our board who are real activists, Anna Fay is on our board, James [Billy] used to be on our board. He was the director of the Harlem Independent Living Center, now works for an RFA under the independent living coordinator. And Susan [Doowau] who works for Gay Men's Health Center, who is a real activist in managed care issues. So, people with disabilities are on our board. So, we have, you know, strong advocates on the board.

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Jacobson

Do you have criteria of who can be a client?

Saviola

Yes, there are state mandated criteria, you have to be Medicaid eligible, right now living in the Bronx or Manhattan. We're going to be expanding into Brooklyn next year and then Queens. And you have to score on a screened--high enough needs to be eligible for nursing home care if you didn't get what you needed. So that if you didn't get what you needed in the community, you would score high enough to be placed in a nursing home. And you have to be somewhat self-directing or have someone there who can, you know, help you direct what's going on. We have one woman who has a boa constrictor and two pit bulls.

Jacobson

Okay.

Saviola

It's amazing, the--. Since I work more with the members, you really forget as an activist, what the real issues are for people. We had a meeting a couple weeks ago with Margarita Lopez who is the city council member who chairs the committee on disability, and we were--. Tracy, who is the editor of the paper and one of my advocates, was working on an interview with me and we were talking about issues-

Jacobson

What's Tracy's last name?

Saviola

Mitchell. And we were talking about different issues and Ms. Lopez said to me, "Let me ask you a question, since you work with people directly who I may not hear from, who are non-activists--when I talk to activists in the community they identify one thing as the most important issue, but you talk a lot about housing. If you had to say, for your members, what was the most important issue, what would you say?" I had to say housing. So she said that was very interesting that activists identify it as transportation.

Jacobson

But aren't most of the buses accessible?

Saviola

All the buses, we have 100 percent bus accessibility.

Jacobson

So why is the--

Saviola

You don't have inter-borough transportation regularly, that's subway, basically.

Jacobson

Okay. But the buses also go to the boroughs?

Saviola

Yes, but there's limited city buses that are inter-borough, most of them are contract, and they're not all accessible.

Jacobson

Okay.

Saviola

The bus, the B-51 which connects downtown Brooklyn to City Hall only runs during the week, it doesn't run weekends.

Jacobson

What about employment?

Saviola

Interesting thing, we've had about six or seven people become employed since they've become members.

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Jacobson

And what happens once they get employed?

Saviola

Nothing, really, because they still meet the eligibility. With the 16-19 programs, they are on SSI anyway, they could still, with their work-related disability expenses, still qualify for Medicaid.

Jacobson

Tell me what's the "16-19" programs.

Saviola

They're the work incentive programs for SSI.

Jacobson

Okay.

Saviola

Which is a way of letting you keep your Medicaid and still continue to work.

Jacobson

Are they local?

Saviola

No, those are federal programs.

Jacobson

Is that happening in every state?

Saviola

It should be, because it's a federal program, yes.