Mouth asks, Why make |
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an interview with Alene Jensen photo by an innocent bystander This interview first appeared in Mouth magazine #57 in January 2000
Alene Jensen, aka AJ, is a fireball who manages the personal attendant management services at the Topeka Independent Living Resource Center. TILRC serves as payroll agent for 797 Kansans who receive Medicaid-funded attendant and support services. You read that right: 797. AJ and TILRC can serve so many people because the "consumers" themselves hire, manage, schedule, train -- and once in a while fire -- their own attendants. In the photo at left, Alene is under arrest during an ADAPT action and making a note to that effect in her journal. |
But helping professionals seem to have been trained to make our choices for us, for our own good.
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When
I train case managers, I start out by asking them what they
had for breakfast. Why did you
choose a donut? Do you think that's nutritious? Some people
just have a coke. Is that nutritious? No? Well, I ask them,
are you maintained on that? And who picked out your clothes
today? Was that the appropriate thing to wear? So when I train case managers, I go around the room, asking, 'What time did you go to bed last night? Everyone says a different time. I say, why? Well, it's because that's what they wanted to do. Then why would somebody have to go to bed at nine o'clock every night because that's when somebody could send an attendant? When I worked for the state, for adult services, there was no such thing as self-directed care. Eight or nine o'clock was the latest they'd go put anybody in bed. Do you want to go to bed at eight at night? I don't. |
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That 'walk a mile in my shoes' bit is a toughie... |
Sometimes
the case managers are in disbelief, and it's
like, 'Well, but...' Well, but what? What if you go out here
today... and I try to put them in the situation. Like one
day it's icy and stuff and you fall down these steps and you
break your neck and you're a high quad. Now you need help
with every single thing in your life. How many people do you
want looking at you naked? Do you want to choose the person
who comes in and gives you a bath? I
ask them, have you ever had a friend say, 'Let's go to the
Dairy Queen and have a great big banana split.' And you skip
lunch and do it. So what?! You didn't die of it! Neither
will somebody with a disability. But that's the biggest
thing I hear out of case managers, especially for the 'frail
elderly.' They say, 'You have to have a balanced diet.' |
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We hear the argument that when people control their own lives, it's not safe. How do you answer that one? |
People
aren't exploited in nursing homes? Aren't sexually abused?
Aren't fed their own feces? Excuse me! If
I had an attendant that was ripping me off and I was afraid,
I would call my independent living counselor and tell them.
If the person feels like they're in a dangerous situation
and they want to get rid of that person, and they don't feel
like they can, they can call me. I'll go out there. I'll
fire them. In a nursing home, you can't fire anybody. In a
nursing home, they'll tell you, 'Eat shit and shut up.' They
will! If you don't like the attendant on your shift, you
can't change that. It ain't gonna happen. |
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But if things get out of hand, you can always step in, right? |
We
never assume that people want intervention. If
they want to be self-directed and they've never done it,
we'll say, 'Here are the steps on how you can do it and if
you want us to, we'll have a person help you. If they need
assistance to pick their own attendant, like if they've
never done that before and they need some cues or some
training to do that, we'll provide that free of charge. |
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We've heard that you get people out of nursing homes on a regular basis. How do you do that? |
The
way we get people out of nursing homes is to ask them if
they want out. A woman who used to work here,
Brenda Hanna, she and I would go into the nursing homes and
ask people if they want to leave. We would just start
talking to people out in the smoking room. 'How do you like
it here? You want to be here? Would you like to leave? You
would? We can help you get out of here.' We would just start
the ball rolling. We've had nursing homes run us out before.
We were the dastardly duo. So
first we'll say, 'You want to leave?' and they'll say yes
they do, but they don't have anything. They don't have the
stuff to keep house with. And that's not a problem. We'll
help them get something. |
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But you couldn't do that in most other states, could you? |
The
attendant services and supports are available here, in
Kansas. The whole state has
waivers so that if Medicaid pays to keep you in an
institution, Medicaid will pay for your services at home.
Getting that changed wasn't easy. Even now we still have to
keep after the state legislature, to get everybody served.
But that's the way it is now. Any state can do what we did
in Kansas. Centers just have to band together because,
individually, your voice can be squashed out.. |
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How are we going to re-train the world so that people with disabilities will be allowed to make their own choices? |
A
lot of people have this misconception that a person with a
disability isn't able to do or think. They see a
person in a wheelchair, and they talk really loud. There are
some people who are passive, and they take it. Maybe they've
taken it all their life. If a kid with a disability wants to
get out on their own, it's hard for parents to cut them
loose because they've done for them so much. The kid will
say, 'Well, I can do this.' Then it's like, 'But what
if...' |
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To find out how every state can become as advanced and progressive as Kansas! Click your heels here and go directly to Freedom Clearinghouse. Click here to link to the website for TILRC, where AJ works. |
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