Banner News: Thousands in Kansas are free at last. On May 21, 1997, Mike (Mo) Oxford and Alene (A.J.) Jensen of TILRC, the Topeka CIL, received The Health Care Financing Administration's (HCFA's) National Award of Merit for their work to re-invent and expand home health/personal assistance services for the people of Kansas who have physical disabilities. The last time we saw Mo near the HCFA, he was one of the Adapt activists who surrounded it and shut it down.
Mouth asks, What happened? MO SAYS We did what we promised. We freed our people.		an interview with Mike Oxford by Josie Byzek   This interview first appeared in Mouth magazine #43 in July 1997 Mike Oxford is director of the Topeka Independent Living Resource Center (TILRC), a center for independent living. He and Alene Jensen, personal assistance director of TILRC, fought for years to win this historic change for Kansans with disabilities. The people of TILRC will be teaching other groups how to make similar changes in their own states' Medicaid programs. For info, call TILRC at 913-233-4572. Or see Mo and A.J. at any national Adapt action. Or read our AJ SAYS interview.
How did this whole move get going?	It got started at Adapt's first action at HCFA in 1991. This was in the early stages of Adapt's campaign for attendant services. What we wanted was a meeting with Louis Sullivan, who was head of Health and Human Services. We surrounded the big HCFA building in Baltimore and closed down the entrances and exits. Then we closed off their parking lot. Then we shut down the four-lane highway in front of the building. Eventually we got our meetings. After the 1995 action in Washington, D.C., Adapt got a meeting with Donna Shalala. At that meeting, Stephanie Thomas from Adapt Texas cut right to the chase, which she is good at doing. As a result, Shalala directed HCFA to work with local Adapt chapters to start working things out. We got a policy letter from Shalala, and her direction to HCFA to meet with Adapt contacts to identify roadblocks. We have had a number of meetings with them over time. One of the things that came from the HCFA regional meetings is that now HCFA is in a mode where they will approve any program that makes sense, as long as people with disabilities and the state officials approve it. The programs must be worked out at the state level. So we went back home and worked it out with our state. We got involved with writing this new state Medicaid waiver that went into effect in January -- it was tons of meetings that got to be a real drain. But in the course of that, we got to look at the old waiver to see how to fix it, make it better.
Was there a program in place already?	In 1989, the legislature passed a state law here in Kansas allowing for self-direction in attendant services. Adapt and Independent Living advocates worked together to get that law passed. It was a real broad-based statewide effort. We'd had an MA (Medicaid) waiver since 1981 that had done some evolution. Then the self-direction law created a lot of improvement; people were a lot happier. Under that law, people can hire, fire, manage, and train their own attendants under any MA waiver. There was a question at the time as to whether you could do that, whether that would work. Today, even though the waivers are different, the self-direction law goes across all those different programs and services to make it work. People who can't direct their own can pick someone to do it, like a parent.
But the real news is...	Now Kansas has made a commitment to community first. There are mechanisms now so that everyone is offered the choice of staying home or going to a facility. If they choose home, then they choose whether they want self-directed services or not. Then they choose which services they want to direct, and which ones they don't. In between those broad options are a bunch of sub-options. For example, our CIL only does the self-directed piece. We can go find people for you, and assist you in learning how to hire. We also keep a registry of people who are willing to be attendants. Here's a big part of it: We also do what the state calls "resident status review." People who are in nursing facilities get to meet with CIL staff to see if they're getting what they need at the facility, and if they want to move out. This is required by law now. Nursing homes have no choice about it. We help people move out, if that's what they want. That end of the things is really starting to pick up. We've always helped people get out, but now it's part of the state program. Everyone's catching on. Now that they know they have this choice, they want to go. We've moved a lot of people to freedom.
We hear you even changed the definitions and got rid of "case management." Is that so?	The first thing is that usually there is a grocery list of services, and the state picks the ones it provides. We got rid of the list, the complicated definitions, and instead of that, Kansas now provides just two services: personal services (help bathing, eating, and things like that) and assistive services (home modifications, ramps, flashing doorbells, augmentative commincations, environmental control units, and so forth). The second thing: most waivers have a person's service hours set up by monthly payout. What we did was annualize the payout, and individuals decide how to split that money up and spend it over the course of a year. So, if I get $20,000 a year in services under this new waiver, and I need home modifications that cost $5,000, I can use that amount up front, and cost out the attendant services over the year. We justify that by saying, "If I get my bathroom done, I can take care of my personal business. If not, I need more attendant care for the rest of my life." That's a pretty important improvement. The creation of our own two definitions [see "The first thing" above] is an innovation that HCFA approved. There is a case management requirement under any MA waiver. So the other thing we did, good or bad, I don't really know yet, was we got rid of the language "case management." We call it "independent living," and that function is carried out in our state by Independent Living Counselors who work at centers for independent living. We could only start implementing this in January of 1997, but it is working well so far. CILs are an important part of this work. Counselors are, for the most part, people with disabilities. Under this waiver, they must also receive training in IL philosophy, self-direction, and a number of other issues that we felt were important. More traditional type case managers don't have a clue, and say things like, "What if they take too many pills? " We had to justify this with HCFA. And we did.
Could we do this in other states?	The key thing there is for local groups to get involved with their HCFA people. Play them off against your state people. Right now, anything that's reasonable and makes sense, HCFA will approve. Jam on your state politicians and bureaucrats right now, or you're missing a big boat. Our state person in charge of this waiver was in Missouri. The Missouri state folks were saying, "We'd like to do this, but HCFA won't let us. It's against their rules." Our state person jumps up and says, "Sure they will! They let us do it! It's up to the state." A lot of this is right now a state option. States are not choosing to use their flexibility there. Get in touch with the HCFA people and use them. We found that existing policy can go a long way, but it's up to the state to use it. Income guidelines can even be altered to be a lot better than they usually are. Under HCFA, it can go up to 300% of SSI income. That's $19,000 a year. For our world, that's a lot of income. Most states choose 100%, not 300%. Our state was at 90%. We got it increased to better than 120%. States can choose that. All but a handful of people can keep their entire check and still get attendant services. Let's say we can get CASA (the Community Attendant Services Act, now MiCassa, House Bill #1935, the Medicaid Community Services and Supports Act) at the federal level. All this work about how things are actually going to happen will still need to be done in your state. Now is the time to figure out what it is you want to happen in your state or your community and get it done.
How did you avoid "capping"?	The key is aggregate. Our state uses an aggregate cost cap. On average, states spend less through providing people's services in the community than states spend through institutions. That's what "aggregate" means. Most states go to individual cost caps -- then say that some people are "too expensive" to live in the community -- but our state cap is aggregate. You have to explain it a lot to state people. Aggregate is the way to go. Some people only need $100 a month in services, some may need $3,000 or more. But when you take the aggregate, the state saves the money on everyone who lives free . Some of the people in Kansas receive 24-hour care. You can get up to 18 hours of attendant services, and if you need more, then there are what we call night supports. And even with this many hours of services, the state-wide average -- the aggregate -- is still cheaper. Night services are really not that big of a deal. The amount of stuff someone might do for you during the night is pretty minimal. Most people sleep at night. So someone comes over and stays in your house at night. If you need something then, a drink of water or whatever, that's what they're there to do. Kansas has been having night supports since at least 1990. States can do that if they know what it is and how little it costs. Another key is the Helen L. lawsuit. That suit, Steve Gold's case, is the best argument you can make. Helen L. sued the state of Pennsylvania on grounds of the ADA and won her freedom from a nursing home. We showed that case to our state HCFA people, and got the point across. Helen L. is the law. They can look it up. If services aren't provided in the most integrated setting, use that case so they will be. States with model programs or waiting lists -- those programs can expand and the lists can be gotten rid of using the Helen L. case. A lot of states have little programs that can be springboards to freedom for people in nursing homes. And the time is now. There's going to be variation among the states that no national law can fix. Like nursing laws. What any individual can do is going to depend on state licensure laws. Still, this can be done. [Editor's Note: Helen L. preceded Olmstead v. L.C. & E.W., the suit which is now making freedom possible for hundreds of thousands of Americans.]
How was the award ceremony?	They had this big reception thing when we got the award. The last time I was over there, they didn't have a reception for us. I'd been on the outside agitating, but I'd never been on the inside. I was wondering whether to wear my overalls... but that would cover up the Adapt t-shirt. Finally I chickened out and wore a sport jacket. We got a lot of respect from HCFA for the grassroots work and the demonstations, as well as for the program side. That's how services and advocacy are supposed to match up to each other.
[Editor's note: not all Kansans are freed. The Kansas Medicaid program described here is called the Physically Disabled (PD) waiver and is available now for people with physical disabilities, age 18 - 65, who are Medicaid eligible. After age 65, what's called the Elderly Waiver goes into effect. That program also allows people to direct their own care and maintain services they've had under the PD waiver. Other Medicaid waivers in Kansas allow some people with other disabilities to live outside institutions but do not contain all provisions of the PD waiver. The fact is that varying degrees of freedom are allowed to people depending on their diagnostic category and their income. Mike Oxford and Adapt regret that set-up and work for the day when all of our people live free.]	TOP OF PAGE   | INDEX | HOME | ABOUT MOUTH | SUBSCRIBE |   Do you have something to SAY? Click here	How can people who need assistance be served without separating them from us? Alene Jensen, who manages Personal Attendant Services at the CIL Mike runs, TILRC, is on the front lines in that effort. Read what she SAYS. If you haven't subscribed to Mouth already, please say you'll join us and SAY your own piece.