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-