an interview with Candace Hawkins
by Josie Byzek (who remarked about the interview, "The trouble with interviewing Candace is that she's too humble.")

Mouth asks,

What's the big excitement about Missouri?

Candace SAYS

People are excited about what Missouri has -- and they should be. We changed the way our state delivers long term care.

The money must now follow the person being served to the place where they choose to be served. It's a huge change.


photographer unknown
photo shows Candace at left, Max Starkloff at right. (Both use wheelchairs, but the one Candace uses is smaller.)

This interview first appeared in Mouth magazine in July 2000.





Candace Hawkins helped organize the Olmstead effort in her home state, Missouri. Others who pushed it through include Jim Tuscher and Kirsten Dunham of Paraquad; Cheryl Price and Joe Alder; Joe Wrinkel of People First; and Missouri's AARP.

For more about Olmstead, click here to go to the Freedom Clearinghouse website.

Events in Missouri
The legislature of the state of Missouri has now written into law that state and federal long-term care dollars will follow the person rather than paying for a "slot" in a nursing home or another long-term care institution. It is the first state to have made this move. Missouri won an Adapt Golden Urinal Award for its institutional bias not long ago. The new Medicaid Appropriations Bill reverses that bias. To read that bill on the Freedom Clearinghouse website, click here.
The effort to make the change began in early January of this year, and was the collaborative work of the Ad Hoc Coalition (see below) and two key legislators.
The bill passed on April 27. His office has invited Candace and other advocates to attend the signing.
As Mouth went to press, Candace attended a meeting between the U.S. Department of Health & Human Services and state agencies. Two of those agencies went on record as saying they will be geared up to deliver on the Olmstead promise by July 1. "Their accountants are talking now. That's how I know it's real," she told us.
The bill was signed into law by Governor Mel Carnahan on June 28.

About those events, Candace says,

It was really neat, how it happened.

The appropriations chairman said, 'Folks, you know how we direct money -- through appropriations. Go down to Brad, and get it done.'

Brad is the budget analyst, and he did it.

The language was incredible -- so detailed and just exactly right.

But you want to say, first...

Some people are getting the idea that we have the entire Olmstead plan in place. Not so. Not yet.

What we have is, first, the law -- the Olmstead decision from the U.S. Supreme Court -- is on our side. Now we have $645 million on our side. No bureaucrat can wiggle out of it by saying they don't have the money. The legislative language says that it is the person's choice, that the money follows them.

But, until state Medicaid writes the policy and the regulations and the procedures for it to happen, nobody wins. Nobody's free.

That's our big push now, to get all of this in the Medicaid plan. But since the state now has the money, they can no longer say they can't do it for one reason or another. They don't have an excuse.

[As Mouth went to press, two departments of the state of Missouri announced that they would be "ready to roll" with the law on July 1, this year.]

What is so controversial

The money. And where the money goes.
Most of the ADA changes were like taking down the 'No Irish' sign.
Yeah, we had to put up some ramps and fix some bathrooms and put in some parking places, and try to get some assisted listening systems and architectural barriers stuff.
But it really didn't hit big on the pocketbooks. Olmstead does. It has the potential of taking people's bread and butter right off their plates -- the nursing home industry's. Home health care agencies feel threatened too. We know it could be profitable for home health, but they see the whole concept of self-directing as competition for their control.
The home health people really hurt the waiver process last year. They said, "Only for those under 64." They wouldn't open it up for anybody else. They were afraid that everybody was going to self-direct, and they would lose the control that they have. They're going to have to adjust, now.
But Olmstead hits bigger on the nursing homes because they'll lose what they call "beds." Note that to them it's not people, it's beds: Got to fill those beds.
State institutions are going to lose "beds" too.
It's just like what happened with the railroads. The reason they ain't around is that they were in the business of running a railroad. They didn't see it as the business of transportation.
If nursing homes realized that they were in the business of providing services for people with disabilities, then they'd realize that they could turn around and send their same employees out to clean your room, do your cooking, help you get upstairs or into bed. They could make more money and not have to maintain the buildings. They could provide personal services, so that people can live like regular folks. Like rich folks, actually.
What we're talking about is poverty. My doctor had cancer. And he needed more help. He had money. He didn't go into a nursing home. He had people come in and cook and help him with activities of daily living. People with money get that help. That's what poor people, on Medicaid, can't afford.

Am I right that Missouri
had an advantage --
the Medicaid Personal
Care Option?

If our state hadn't already had it demonstrated that it's less expensive for people to stay in their own homes, we probably would not have won the appropriation.

In other states, where they don't have the Personal Care Option, everybody acts like, 'Oh, then we're hopeless." But state Medicaid plans are not carved in stone. You just write a new plan and say you want to do it that way. State plans are a lot more flexible than the state agency people let on. They just have to write them. And you can participate in that process. Then HCFA (the U.S. Health Care Finance Administration) has 90 days to approve or reject the plan. The rep from HCFA told our state, "We're not here to tell you what should be in your plan. We're here to assist you."
With Olmstead, we're not reinventing the wheel. We already have home- and community-based services in every state and territory and it's working. It's a win-win. Home services are cheaper and it's a higher quality of life.

How did Missouri happen
to get the Personal Care
Option in the first place?

It's cheaper.

I think we got the personal care option back in 1993 -- and for the simple reason that they realized it's cheaper to have someone live at home, and age in place, than it is to move them to a nursing home.
The personal care option, right now in Missouri, is run under a Division of Aging program, and it's pretty narrow in focus. But that's how it started.
It's common sense. Everybody would rather be at home than in a facility.

The sad thing is that the developmental disability community got this same flexibility last year and they never implemented it. The department says it was "waiting for Olmstead."
But now, with the Medicaid Bill calling for the money to follow the person, the state MR/DD agency will want to get on the ball. No agency wants to have the legislature looking at them for not following the law.

Couldn't you have done it
with Medicaid waivers?

The whole idea of a Medicaid waiver is to eliminate the universality of a service.

You could say, 'I'm going to waive the entitlement of anybody who's eligible for Medicaid to get that service.' That would be a waiver.

With Olmstead, as we have it in Missouri now, everyone who is eligible for government-financed long term care services is eligible to get them in the setting they choose. Period.
No waiver required.

What group is doing the
actual advocacy work?

We call ourselves the Ad Hoc Group.

We're advocates, a lot of folks who worked last year to get a small but I guess better-than-nothing waiver through. The group grew out of that effort.
We're pushing the state to implement Olmstead. You can tell that we're making progress because the groups that usually hang back on anything controversial are starting to come out and take more of a leadership role. The DD planning council, the SILC, they're strongly backing the effort to get the state up and running on Olmstead. That's really good. AARP and People First have been on our side right along.
At first some groups and CILs thought we were going to do nothing, and ignored us. Then when the appropriations got switched, guess who came back to the table! It was nice, really. It was terrific..

How did you get
the state's attention?

We would not have gotten the state's attention if HHS and HCFA hadn't come to that first meeting.

They dominated that meeting. They presented the background on Olmstead and emphasized that it's one of the top five priorities of HHS. We had two people come out from Washington and at least seven came from the HHS regional office.
There were way more feds than state people at that meeting. And they have kept coming, kept active in the overall planning process. John Halverson (Regional Manager of HHS Office of Civil Rights) has been active on our committee to put together the trainings for state employees and materials for people to learn that they have the right to live free. John is blind himself.

What do you say to
anyone who wants this law
applying only to people with
certain disabilities,
of certain ages?




'What part of "ALL" do you not understand?'

For July 2000 news of how Indiana Clearinghouse advocates gave the state some comeuppance, click here.

Freedom Clearinghouse is enlisting advocates in every state and territory to do what Candace and the Ad Hoc Coalition have done in Missouri. To see who has signed on in your state -- and maybe join them to make yours a free state -- click here.

To go to the Freedom Clearinghouse website, click here.



Do you have something to SAY?
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At right is the cover of the Mouth Chronicles issue where Candace SAYS appeared. Click here to link to it in our online Attitude Catalog store.


#60 cover