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
The last time we saw Mo near the HCFA, he was one of the
Adapt activists who surrounded it and shut it
We did what we
We freed our
an interview with Mike Oxford
by Josie Byzek
This interview first appeared in Mouth magazine #43 in
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'
For info, call TILRC at 913-233-4572. Or see Mo and A.J. at
any national Adapt action.
read our AJ SAYS interview.
How did this whole move get
got started at Adapt's first action at HCFA in
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.
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
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.
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.
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
1989, the legislature passed a state law here in Kansas
allowing for self-direction in attendant
and Independent Living advocates worked together to get that
law passed. It was a real broad-based statewide effort.
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
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...
Kansas has made a commitment to community
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.
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
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
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.
moved a lot of people to freedom.
We hear you even changed the
definitions and got rid of "case management." Is that
first thing is that usually there is a grocery list of
services, and the state picks the ones it
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).
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
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."
a pretty important improvement.
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.
could only start implementing this in January of 1997, but
it is working well so far.
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? "
had to justify this with HCFA. And we did.
Could we do this in other
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
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.
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.
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.
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
key is aggregate.
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
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 .
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.
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.
key is the Helen L. lawsuit.
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.
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.
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
[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
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.
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.
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
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.
Medicaid waivers in Kansas allow some people with other
disabilities to live outside institutions but do not contain
all provisions of the PD waiver.
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.]
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