August 15, 2021 • 28 mins
Today's podcast is about Wisconsin's dark secret. A piece of history that many think should be forgotten. And while many states have made decisions to do just that, Wisconsin seems stuck in the past. What are we talking about? It is the fact that Wisconsin still operates three state institutions for people with intellectual and developmental disabilities. Places that have been open since the 19th century. Why? Let’s learn about it with our guests today – Tami Jackson and Cindy Bentley.
Tami is an experienced public policy analyst and has worked on budget and legislative proposals on a wide array of public policy issues at both the state and federal level. Tami leads the Wisconsin Board for People with Developmental Disabilities policy work, advocating on public policy issues important to people with developmental disabilities and their families.
Born with an intellectual disability, Cindy Bentley spent much of her childhood at the Southern Wisconsin Center for the Developmentally Disabled. No one expected her to learn the skills necessary to live on her own. But now we know she now runs a statewide organization as the executive director of people first Wisconsin and lives in her own apartment. She is a self-advocate leader in Wisconsin and the nation.
Learn more about People First Wisconsin: http://www.peoplefirstwisconsin.org/
Learn more about the Wisconsin Board for People with Developmental Disabilities: https://wi-bpdd.org/
WI State Institution Facts:
· There are three state institutions for people with intellectual and developmental disabilities in Wisconsin at Northern, Central and Southern Center.
· Many states have closed all their institutions for people with IDD.
· Over the years fewer people have been living in our state institutions, yet the cost to keep them open is growing.
· The total cost to run all three state centers is more than 125 million dollars which is $9 million more than last year.[1]
· It takes almost 15-hundred staff to run the institutions.[2]
· In this budget the Governor is asking for more than $45 million to repair buildings at Central Center.
· Only 307 people live in all the state centers right now. That is 39 fewer people than lived there last year. These residents are getting older and there are no new admissions.
· It costs $1,303 a day to support someone at a state institution.
[1] $126,703,600 in 2020-2021; $117,153,200 in 2017-2018; Fiscal Bureau numbers.
[2] 1,441.60 in 2020-21; 1,461 in 2017-2018; Fiscal Bureau numbers.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:05):
Welcome to the arc experience, featuring the
stories of self advocates withdisabilities and their families
from around Wisconsin.
Be inspired.
Take action.
And now for today's episode,
Speaker 2 (00:22):
Hello and welcome to the art experience podcast.
I'm your host Lisa pew with thearc Wisconsin.
And today we are talking about aWisconsin fact that is not
really well known, but it'sreally pretty important to
people with disabilities.
Some might actually call it adark secret.
It's a piece of history thatfrankly should be forgotten.
(00:44):
And while many states have madedecisions to do just that
Wisconsin seems stuck in thepast.
So what are we talking about?
It is the fact that Wisconsinstill operates three state
institutions for people withintellectual and developmental
disabilities, places that haveliterally been open since the
19th century.
(01:05):
So why let's learn about it fromour guests today, Tammy Jackson
and Cindy Bentley, Tammy is anexperienced public policy
analysts working on publicpolicy issues, important to
people with intellectual anddevelopmental disabilities and
their families at the state andfederal level.
She leads the Wisconsin boardfor people with developmental
disabilities policy work.
(01:27):
And then Cindy, she's born withan intellectual disability.
She spent much of her childhoodat Southern Wisconsin center for
the developmentally disabled iswhat it's called.
No one expected her to learn theskills necessary to live on her
own.
But now she runs a statewideorganization as the executive
director of people.
First, Wisconsin.
(01:47):
She lives in neuro and apartmentwith her cats.
And, um, she's a self advocateleader in Wisconsin and the
nation.
So welcome to both of you forjoining the podcast today.
Thanks for having us.
All right.
Let's get started.
So, Tammy, um, first I want tokind of set the stage with some
facts.
Can you give us a littlebackground on the, um,
(02:10):
Wisconsin's history with thesestate institutions?
Speaker 3 (02:15):
What was Cotsen followed suit with many other
states in our country's historyin the 19th century?
Um, the public policy for peoplewith intellectual and
developmental disabilities wasto put them in state run, state
funded campuses calledinstitutions for their whole
lives.
That is what we did for peoplewith disabilities.
(02:37):
Um, so we were not unique as astate.
In fact, this was, um, in the19th century considered to be a,
an actual development, um, thatpeople would go someplace and be
cared for.
Um, not unlike the orphanagesyou hear about for the same time
and other poor houses.
There was a big movement of putpeople in centralized locations
(03:00):
for various reasons, and thenyou can take better care of
them.
That was the idea at the time.
And what we know now is thatthat kind of concentrated
setting tends to bring with it awhole bunch of things that
aren't so good.
Um, and Wisconsin operates stilloperates, three state funded and
(03:22):
Medicaid funded institutions,um, state taxpayer dollars go to
pay for, um, all of thebuildings and the maintenance
and all the costs of runningthose facilities at all of the
24, 7 day a week staffing, um,every on and all of the care
that that residents receivedthere.
(03:43):
Um, we used to have thousands ofpeople who were living
permanently in these stateinstitutions.
Um, now we're down to a littleover about 375 people in the
state still live in our threestate institutions.
Um, but it's certainly a legacythat has is ongoing, um, even
(04:05):
far after the, the movement, um,to, to close and
deinstitutionalize people that,that came in the seventies.
And, and we should note that,you know, when states started to
go into the business of runningthese, these large-scale
facilities, it was reallyinvestigative reporting that
(04:26):
happened in the seventies thatexposed what the abuses and
neglect that people living inthese places face Willow Brook
is a institution in New Yorkthat really spurned the movement
away from institutions as theway we should have public
policy, what our public policiesshould be for, for people with
(04:47):
disabilities.
And that is within living memorythat, that ha that expos they
happened.
It was Geraldo Rivera, who, whoactually, um, expose that.
And, um, you know, since thattime there's been kind of an
awakening that these types oflarge-scale facilities bring
with it, certain kinds ofpractices that really do lead to
(05:11):
people, having few choices intheir lives and, and, um, and
really not being able to, uh,fulfill the potential that they
have.
Speaker 2 (05:22):
I'm sure that was a public policy that seemed to
make sense back in the day.
And, um, over time it just gotbad for people or maybe people w
woke up to what, what was reallyhappening there is what I think
you're saying, you know, priorto,
Speaker 3 (05:40):
When you think about the 19th century, it was a
really different time prior tostate institutions.
They put people withdisabilities in prison because
that was the place that you had.
That was a location.
So I guess from, from thatperspective, rather than
imprisoning in a prison that hadbad conditions in it, just
(06:00):
because they had a disabilitythat because they didn't commit
any crime, it must've seenbetter to put people in a very
similar kind of setting that wasonly for people with
disabilities, where you couldmake the case that they would
get better care.
But as it turns out the setting,you know, when you have lots of
people and limited numbers offolks caring for them and no
(06:24):
choices, um, it really wasn'tbetter.
It was the same as just adifferent flavor.
Right, right.
Speaker 2 (06:31):
And, you know, unfortunately, Cindy, I know
that, you know, just like Tammysaid about the Willow Brook
story, which is in recentmemory, I know this is part of
your story that you, as a childspend time in one of these
Wisconsin institutions.
And I wonder, you know, how doyou look back on that time in
your life, Cindy?
(06:51):
Cause I know that's really, um,been part of the passion of your
work now.
Speaker 4 (06:58):
Um, I'm surprised I survived to stay the
institution.
You know, I, I know a lot of myfriends did not survive, um, out
there.
Um, you know, they told me, youknow, I wasn't gonna amount to
anything, but I just kept onpushing myself and fighting for
(07:24):
myself.
They didn't do a lot oflistening out there to people
like myself.
I was sent out to a regularschool, which I'm very thankful
for.
And I was on their, on groundschooling and a teacher there,
which now is deceased, you know,told me I was lazy and all that,
(07:45):
that wasn't it.
She was just so mean, you know,as a teacher at the center, um,
yes, I was out of there for, youknow, nothing really worked when
they would send me out to theseplaces because those people
worried or were mean too.
So I
Speaker 2 (08:07):
See, what did it look like living there?
Like what was your day?
Speaker 4 (08:11):
It was, it was, uh, it was a horrible.
Yeah.
It's like, you know, I wouldn'tsay horrible, but horrible
enough is that, um, well, youknow, you get up four 30 in the
morning, four o'clock wheneverthey wanted to get you up to
(08:35):
wait to have Ralph as at seveno'clock or seven 30.
And yeah, the food was awful.
Very awful.
Probably not a lot of choices.
No.
And I mean, they had like aconversation where you could buy
regular sweet, but you had tohave money to do that.
So we didn't have anybodyputting money on a card for you.
(08:59):
Um, you didn't have, youcouldn't buy any of that stuff.
So, um, and you know, they gaveyou a snack.
It wasn't great snacks.
And um, what do you think onthey call them day room.
So he watched TV hollered when Iwas out, mostly in school.
(09:23):
So I was at that school age, sogoing to school every day.
And then as I got older in thatcenter and grow, I know out of
the school system and theirschool system, they had workshop
there, which was so boring, youknow, we worked scales.
And the only thing I could sayabout that worst skill program
(09:46):
was she said, I can work in afactory when I got out of the
Southern center, you know, andSouthern center to psychology.
No, she needs to go, no, sheneeds to go to a shelter
workshop.
You know?
So that's where I lined it up ina sheltered workshop out of this
center, which was in worser.
(10:08):
I think group homes are worse ortoo.
Cause when rad from a biginstitution to a small
institution in a group homestill had rows and still have,
you know, this and he couldn'tdo this and couldn't go here and
, uh, all kinds of stuff.
So
Speaker 2 (10:28):
It sounds like very few choices about your day from
even when you could get out.
I think I remember you tellingme you don't like to eat oatmeal
because that was kind of oh,
Speaker 4 (10:39):
But that it change over the last five to six years
because, um, that was Southernsenators.
Oh man.
I just thought, okay.
It couldn't be any betteroatmeal.
So, um, about five years ago,um, my, um, friend had made some
(11:00):
oatmeal and I love oatmeal now.
So I use that.
It was one
Speaker 2 (11:04):
Of those foods you kind of were forced to eat at
Southern
Speaker 4 (11:07):
Style and Kramer, wait, I still don't like Kramer
away, but oatmeal is goodbecause I need the vitamins and
I made myself like any, so I'meating oatmeal again, not grim
away though.
That's
Speaker 2 (11:21):
Good to know.
Well, I mean, I think, and itsounds also like low kind of
some low expectations were setfor you.
If everybody in the, in the S inthe center was, well, let's just
watch TV.
Speaker 4 (11:35):
Oh, they had special lumpers, but it wasn't like, you
know, you know, you went tospecial Olympics, you want to
year program, but you're backwith a bunch, you know, I don't
know how many is any Yona andmaybe I want to say about six or
seven and sometimes they'd be upand you have to, you know, uh,
(11:56):
fight your way through the daybecause somebody would be trying
to fight with you.
And you know, you didn't, if youhad your own stuff, people would
bring stuff for me or it wouldbe gone.
It was still at, or the innerstaff would still it or tear it
up.
They'll go to your, they have atemper can go to your room and
(12:20):
just tear up everything.
You know, these
Speaker 2 (12:24):
Do not sound like very enriching places for people
to live.
We know, and working with peoplewith disability that certainly
talking and working with Cindypeople don't want to live there.
And like I said, in thebeginning, other states have
actually closed the door on thispart of history and they don't
(12:45):
have state institutions.
Can you tell us like what otherstates are doing it a little bit
about what you know about howthey've done it
Speaker 3 (12:54):
I've been, I believe 11 states that have completely
closed all of their remainingstate institutions.
So there, I think 11 stateswhere this model of how you, um,
how you provide people withdisabilities, some support, and
I would argue as you shouldstart really support, um, is
(13:16):
gone.
This does not exist.
Um, and then there are stateslike Wisconsin that have
dramatically moved from thestate institutional model.
We have just a remnant of, ofthose 375 people, three
facilities, um, down fromthousands of people spending
their entire lives in these, inthese places.
(13:39):
Um, and we've, we've found a wayto support people in their own
homes and in the community.
Um, and people in Wisconsin havevoted with their feet.
Families have decided that theydon't really want to put their
loved one with a disability in afacility where they are reliant
(14:02):
on somebody else.
They want to have higherexpectations.
They want their child who isgoing to school after the
Americans with disabilities act,have the same expectations as
they do for their able-bodiedchildren.
And Cindy is great proof that,you know, when somebody believes
in you and you get the rightopportunities to man, you can
(14:25):
run your own organization.
You can, you can do all sorts ofthings.
There's difference between beingallowed to do something and
being supported.
And there are unfortunately afew states that really haven't
moved away from this model asmuch as they should.
Um, some of our neighbors inthe, into the south still very
much overly rely on large scalefacilities as their PR is as one
(14:49):
of the main things that they dofor people with disabilities.
When we talk about family careand Iris in Wisconsin, those are
home and community-basedlong-term care programs.
And that has been the differencefor a lot of folks in our state
and the children's longtermsupport programs of how folks
many with even very complexneeds can be supported well and
(15:14):
acts, and really thrive andreach their goals and their
expectations and do more thanthey ever thought they were
going to simply because they hadthe right support in the
community.
Um, and most of the country hasseen the light to move away from
institutions and more towardshome and community-based care,
even though those two thingsaren't necessarily funded at
(15:35):
this in the same way, at thesame level that they need to be.
Um, but families and states haveseen the writing on the wall
that it is far better for theperson and far less costly for
the state to be able to supportpeople in their own homes and
have them as living thriving,working employees, contributing
(15:55):
back to the society instead ofbeing warehoused in a place
where none of those things canhappen.
You know,
Speaker 2 (16:03):
I'm sitting here shaking my head because it's
such, it's such common sense,right?
Like it makes sense that, um,people with disabilities want to
live in the community and havefriends and connections and, um,
you know, have more choices intheir life.
And like Cindy has a pet andthings like that that would
(16:23):
never be allowed in aninstitution.
And then Tammy, you bring upthat other states have just seen
the dollar signs like this doesnot make fiscal sense to be
putting money into these biginstitutions.
So Cindy, I've heard you talkabout this issue many, many
times.
Um, and you're very passionateabout this, not just based upon
your personal experience, but Iknow that you have you feel for
(16:46):
the people that still live
Speaker 4 (16:47):
In that.
Speaker 2 (16:49):
What do you want policy makers to know about what
people with disabilities want?
Speaker 4 (16:57):
I think they need to listen to the person with the
disability if they're in thatinstitution.
Uh, I know the one I'm at thatwas that I know there's people
that can talk with herselfthere.
I do know this who have did alittle homework on some of the
people there, um, is that theyneed to ask people, they need to
(17:19):
go in there, not this, you know,they send me people in here to
check out the violations and allthat, but do they never really
talk to the people?
Well, as Jennifer Kern alwaysused to say, they'll remember
nothing went out, what elsewithout us.
So I feel that the buildings outat the center that I was at, you
(17:47):
know, having the buildingsthey're gonna crumble, you know,
they're gonna crumble one day.
They're just going to get theirold now going, you know,
institution that institution wasbuilt back in the 19 hundreds.
People should not be living inno kind of situation.
And maybe, but I don't think allthose buildings are off to
(18:07):
coding and the people living inthose, in the buildings.
And second thing, I think Idon't call that a home with
flowers in that, you know, I'velooked on her website and people
talk, oh, this is no, they needto be out in the community.
Lot cheaper.
There is people in Metro service, medical needs, they can live
(18:29):
in the community.
They don't need to be there.
There's lots of things out inthe community.
If they're feeding children orwhatever, we, it can happen.
I think we got a good medicalsystem in our, in our, in our
state.
And I think politicians need to,you know, go out there and visit
(18:51):
for theirself.
They need to be over in Northernand central or north Norton or
no.
Well, they're in a ventral andthey're still, yeah, right.
They need to go out there.
We're wasting a lot of money,which I think makes no sense
when we got, uh, you know, um,budgets red here in Wisconsin,
(19:16):
in Milwaukee or in the state, wecould use that money to house,
better housing, better,everything for everybody and in
balanced the budgets.
But no, they rather spend whatis a fourth, how much it is.
(19:37):
Oh, I forgot how much it is forone person.
That's a lot of money.
And I mean, what kind ofservices are they really it's
Speaker 2 (19:46):
Over$1,300 a day.
I don't know if Tammy has a moreupdated figure.
Speaker 4 (19:51):
Right?
I think it's ridiculous.
I mean, we talk about, there'sno money in the state, but we're
paying for two institutions thathave hardly no people in it.
I w I, my dream is while I'malive and I'm real, I'm planning
on being here so late I'mhundred.
(20:12):
I like to see some moment formyself and the next I know, four
or five years, I think we needto keep on them.
I'm not going to let them justtell me, you know, oh, you know,
we're going to keep them open.
I'm going to bug them until theyclose them.
And the people first inWisconsin do not believe in a
(20:34):
segregated places.
And then they, they, they stillgot some, they got life yet.
They're alive and breathing.
They have, they have a, howwould I put it?
They have, they can come out andenjoy their life.
What's left of it.
We don't know when our last dayon this earth is, but they
(20:57):
they're so grieving and theyshould have the chance to be
like, I am, they don't have tobe like me per se, but they can
have a pet if they wanted to,they can live in an apartment
and enjoy, you know, a cup ofcoffee at a coffee shop.
And how many people go to acoffee shop there?
How many people get to goshopping or go to the Zillow or
(21:19):
whatever.
Like I like we do.
So I just, I just want them tobe free.
We there's no more room forthose institutions.
They need it's, it's over.
It's when our young people arenot in people that are being
born now to parents.
(21:40):
They're not putting their son ordaughter in the antidotes and
they want them, like you said,in the community with their
siblings.
So, you know, and have a greatlife.
So, but let's ask
Speaker 2 (21:52):
Tammy what the next steps are.
So teeny, I was just looking atmy notes.
It takes about 1500 staff to runthe institutions.
And in the last budget alone,the governor asked for more
than, I think, 45 million justto repair some of those old
buildings like Cindy said.
So like, it's not like it's justthe cost day to day.
It's like, what's the future.
(22:12):
So what Timmy, what are your,what are your ideas to leave our
listeners with, um, like whatthey can do?
What, what are some actions foradvocates?
Speaker 3 (22:24):
You know, I, I think you're right, those figures are
staggering.
It costs about$120 million ayear just to operate our current
three institutions that havefewer than 375 people in them.
And there's a lot of regulationsthat come with state
institutions as there should be,because we know what happens
when there aren't, um, there's alot of regulations that require
(22:47):
24, 7 staffing and other thingsbecause abuses and neglect have
happened in institutions.
And I think say, you know,Cindy's, Cindy's testimony kind
of, kind of paints the pictureof what that environment is.
And you're right.
There have been, um, just thislast budget,$40 million just to
repair buildings, to bring themup to livable code.
(23:10):
So Cindy's right.
When she's talking aboutcrumbling buildings, there are
certainly many parts of thatcampus right now that are
uninhabitable.
And we really are at a decisionas a state of, do you invest
millions of millions of dollarscontinually until there are zero
people in the institution?
Or do you say it's really timeto close the chapter on this
(23:33):
outdated model and pick up timeto do it and plan for it and
make it happen?
Um, there are many, many peoplewho have, who are complex, who
never went into institutions.
Our last long-term admission inthe state, uh, was in 1984.
So there, there have been no newentries into this, into these
(23:54):
institutions for decades.
And we figured out it's not thatpeople got less disabled it's
that we figured out that thereare lots of ways that we can
support people with significantdisabilities to be in the
community and oftentimes be aproductive members of the
community.
So it really is a matter ofwhere do you want to invest your
(24:19):
dollars?
And I think there are lots ofpeople who live in the community
who would say we would benefitmore as a state.
If we closed down thesefacilities and invested that
money into better care foreverybody who is in family care
and Iris and children'slong-term care, help those folks
(24:43):
help the folks that are in theinstitutions now, as Cindy says,
move out and find a place andenjoy some of the things that
the community has to offer thatmay not have been part of their
lives.
Certainly when Northern closefrom a large-scale facility into
a smaller scale facility, manyof the people who relocated and
many of their parents hadguardians, 80% of them said,
(25:05):
Hey, that our folks have betterquality lives.
And holy cats, we should've donethis earlier.
Um, so we do have the experiencein the recent past of what it
means to transition people outof an institutional setting.
And we know that they canthrive.
It's time to do that for theremaining folks who are there.
(25:28):
It, whether it's consolidatingfrom two institutions into one,
whether it's finding, you know,a way a pathway for those folks
to go into the community, manyof these folks are now older.
You know, there, there are lotsof things that we could do if we
committed as a state to moveaway from that model.
(25:49):
And I think the time is, if it'snot now, it's pretty soon, you
know, like our choices arereally, do you wait until the
last person who's a residentexpires or do you off, or do you
decide that you're going to makea movement earlier than that?
And I say we're long past due.
(26:12):
Um, I have a kind of simple rolein public policy.
It's, it's a couple of simplerules.
And one is, if you're doingsomething as a public policy for
people with disabilities thatyou would not consider to be
fair gesture, right?
For somebody who doesn't have adisability give, probably need
to rethink it.
And nobody institutionalizedable-bodied people.
(26:34):
And the second rule is, are youmaking people's lives better or
harder?
And I don't.
I think the evidence is reallythat institutions don't
necessarily make people's livesbetter.
They are a place where the rulesare set by somebody else and you
learn to exist by those rules.
(26:55):
And that is not what we expectfor able-bodied folks.
So in order to move away fromthis model, you really do need
to stop doing it.
And, and this is, this is thetime where the legislature can
make a decision to move awayfrom this model.
And they should, um, if not,now, they're going to have to
make a decision at some point,and it should be sooner than
(27:18):
later.
Sure.
Speaker 2 (27:20):
I mean, we could talk about this for a really long
time.
I think this has been a greatconversation.
I, you know, I'm hoping that thepeople listening will, um, think
about those, you know, peoplewho are living there and what
they might be able to do toadvocate, you know, I, I like to
end my podcast with sometakeaways and I wrote down it's
(27:40):
time, close the chapter longpast due and set them free.
Cindy, I'm going to give you thelast word.
What do you want to say aboutthis?
Our people bring our people,bring our people home, huh?
Yeah.
Okay.
Thank you both for joining metoday and thank you to our
(28:01):
listeners for listening to thearc experience podcast until
next time
Speaker 1 (28:07):
Today's episode of the art experience was brought
to you by the arc Wisconsin, thestate's oldest advocacy
organization for people withintellectual developmental
disabilities and their familiesit's funded in part by the
Wisconsin board for people withdevelopmental disabilities.
Our theme music called speciesis the property of[inaudible]
(28:28):
and cannot be copied ordistributed without permission.
It was produced by EleanorCheetham, composer and artist
with autism.
Welcome to the arc experience, featuring the
stories of self advocates withdisabilities and their families
from around Wisconsin.
Be inspired.
Take action.
And now for today's episode,
Speaker 2 (00:22):
Hello and welcome to the art experience podcast.
I'm your host Lisa pew with thearc Wisconsin.
And today we are talking about aWisconsin fact that is not
really well known, but it'sreally pretty important to
people with disabilities.
Some might actually call it adark secret.
It's a piece of history thatfrankly should be forgotten.
(00:44):
And while many states have madedecisions to do just that
Wisconsin seems stuck in thepast.
So what are we talking about?
It is the fact that Wisconsinstill operates three state
institutions for people withintellectual and developmental
disabilities, places that haveliterally been open since the
19th century.
(01:05):
So why let's learn about it fromour guests today, Tammy Jackson
and Cindy Bentley, Tammy is anexperienced public policy
analysts working on publicpolicy issues, important to
people with intellectual anddevelopmental disabilities and
their families at the state andfederal level.
She leads the Wisconsin boardfor people with developmental
disabilities policy work.
(01:27):
And then Cindy, she's born withan intellectual disability.
She spent much of her childhoodat Southern Wisconsin center for
the developmentally disabled iswhat it's called.
No one expected her to learn theskills necessary to live on her
own.
But now she runs a statewideorganization as the executive
director of people.
First, Wisconsin.
(01:47):
She lives in neuro and apartmentwith her cats.
And, um, she's a self advocateleader in Wisconsin and the
nation.
So welcome to both of you forjoining the podcast today.
Thanks for having us.
All right.
Let's get started.
So, Tammy, um, first I want tokind of set the stage with some
facts.
Can you give us a littlebackground on the, um,
(02:10):
Wisconsin's history with thesestate institutions?
Speaker 3 (02:15):
What was Cotsen followed suit with many other
states in our country's historyin the 19th century?
Um, the public policy for peoplewith intellectual and
developmental disabilities wasto put them in state run, state
funded campuses calledinstitutions for their whole
lives.
That is what we did for peoplewith disabilities.
(02:37):
Um, so we were not unique as astate.
In fact, this was, um, in the19th century considered to be a,
an actual development, um, thatpeople would go someplace and be
cared for.
Um, not unlike the orphanagesyou hear about for the same time
and other poor houses.
There was a big movement of putpeople in centralized locations
(03:00):
for various reasons, and thenyou can take better care of
them.
That was the idea at the time.
And what we know now is thatthat kind of concentrated
setting tends to bring with it awhole bunch of things that
aren't so good.
Um, and Wisconsin operates stilloperates, three state funded and
(03:22):
Medicaid funded institutions,um, state taxpayer dollars go to
pay for, um, all of thebuildings and the maintenance
and all the costs of runningthose facilities at all of the
24, 7 day a week staffing, um,every on and all of the care
that that residents receivedthere.
(03:43):
Um, we used to have thousands ofpeople who were living
permanently in these stateinstitutions.
Um, now we're down to a littleover about 375 people in the
state still live in our threestate institutions.
Um, but it's certainly a legacythat has is ongoing, um, even
(04:05):
far after the, the movement, um,to, to close and
deinstitutionalize people that,that came in the seventies.
And, and we should note that,you know, when states started to
go into the business of runningthese, these large-scale
facilities, it was reallyinvestigative reporting that
(04:26):
happened in the seventies thatexposed what the abuses and
neglect that people living inthese places face Willow Brook
is a institution in New Yorkthat really spurned the movement
away from institutions as theway we should have public
policy, what our public policiesshould be for, for people with
(04:47):
disabilities.
And that is within living memorythat, that ha that expos they
happened.
It was Geraldo Rivera, who, whoactually, um, expose that.
And, um, you know, since thattime there's been kind of an
awakening that these types oflarge-scale facilities bring
with it, certain kinds ofpractices that really do lead to
(05:11):
people, having few choices intheir lives and, and, um, and
really not being able to, uh,fulfill the potential that they
have.
Speaker 2 (05:22):
I'm sure that was a public policy that seemed to
make sense back in the day.
And, um, over time it just gotbad for people or maybe people w
woke up to what, what was reallyhappening there is what I think
you're saying, you know, priorto,
Speaker 3 (05:40):
When you think about the 19th century, it was a
really different time prior tostate institutions.
They put people withdisabilities in prison because
that was the place that you had.
That was a location.
So I guess from, from thatperspective, rather than
imprisoning in a prison that hadbad conditions in it, just
(06:00):
because they had a disabilitythat because they didn't commit
any crime, it must've seenbetter to put people in a very
similar kind of setting that wasonly for people with
disabilities, where you couldmake the case that they would
get better care.
But as it turns out the setting,you know, when you have lots of
people and limited numbers offolks caring for them and no
(06:24):
choices, um, it really wasn'tbetter.
It was the same as just adifferent flavor.
Right, right.
Speaker 2 (06:31):
And, you know, unfortunately, Cindy, I know
that, you know, just like Tammysaid about the Willow Brook
story, which is in recentmemory, I know this is part of
your story that you, as a childspend time in one of these
Wisconsin institutions.
And I wonder, you know, how doyou look back on that time in
your life, Cindy?
(06:51):
Cause I know that's really, um,been part of the passion of your
work now.
Speaker 4 (06:58):
Um, I'm surprised I survived to stay the
institution.
You know, I, I know a lot of myfriends did not survive, um, out
there.
Um, you know, they told me, youknow, I wasn't gonna amount to
anything, but I just kept onpushing myself and fighting for
(07:24):
myself.
They didn't do a lot oflistening out there to people
like myself.
I was sent out to a regularschool, which I'm very thankful
for.
And I was on their, on groundschooling and a teacher there,
which now is deceased, you know,told me I was lazy and all that,
(07:45):
that wasn't it.
She was just so mean, you know,as a teacher at the center, um,
yes, I was out of there for, youknow, nothing really worked when
they would send me out to theseplaces because those people
worried or were mean too.
So I
Speaker 2 (08:07):
See, what did it look like living there?
Like what was your day?
Speaker 4 (08:11):
It was, it was, uh, it was a horrible.
Yeah.
It's like, you know, I wouldn'tsay horrible, but horrible
enough is that, um, well, youknow, you get up four 30 in the
morning, four o'clock wheneverthey wanted to get you up to
(08:35):
wait to have Ralph as at seveno'clock or seven 30.
And yeah, the food was awful.
Very awful.
Probably not a lot of choices.
No.
And I mean, they had like aconversation where you could buy
regular sweet, but you had tohave money to do that.
So we didn't have anybodyputting money on a card for you.
(08:59):
Um, you didn't have, youcouldn't buy any of that stuff.
So, um, and you know, they gaveyou a snack.
It wasn't great snacks.
And um, what do you think onthey call them day room.
So he watched TV hollered when Iwas out, mostly in school.
(09:23):
So I was at that school age, sogoing to school every day.
And then as I got older in thatcenter and grow, I know out of
the school system and theirschool system, they had workshop
there, which was so boring, youknow, we worked scales.
And the only thing I could sayabout that worst skill program
(09:46):
was she said, I can work in afactory when I got out of the
Southern center, you know, andSouthern center to psychology.
No, she needs to go, no, sheneeds to go to a shelter
workshop.
You know?
So that's where I lined it up ina sheltered workshop out of this
center, which was in worser.
(10:08):
I think group homes are worse ortoo.
Cause when rad from a biginstitution to a small
institution in a group homestill had rows and still have,
you know, this and he couldn'tdo this and couldn't go here and
, uh, all kinds of stuff.
So
Speaker 2 (10:28):
It sounds like very few choices about your day from
even when you could get out.
I think I remember you tellingme you don't like to eat oatmeal
because that was kind of oh,
Speaker 4 (10:39):
But that it change over the last five to six years
because, um, that was Southernsenators.
Oh man.
I just thought, okay.
It couldn't be any betteroatmeal.
So, um, about five years ago,um, my, um, friend had made some
(11:00):
oatmeal and I love oatmeal now.
So I use that.
It was one
Speaker 2 (11:04):
Of those foods you kind of were forced to eat at
Southern
Speaker 4 (11:07):
Style and Kramer, wait, I still don't like Kramer
away, but oatmeal is goodbecause I need the vitamins and
I made myself like any, so I'meating oatmeal again, not grim
away though.
That's
Speaker 2 (11:21):
Good to know.
Well, I mean, I think, and itsounds also like low kind of
some low expectations were setfor you.
If everybody in the, in the S inthe center was, well, let's just
watch TV.
Speaker 4 (11:35):
Oh, they had special lumpers, but it wasn't like, you
know, you know, you went tospecial Olympics, you want to
year program, but you're backwith a bunch, you know, I don't
know how many is any Yona andmaybe I want to say about six or
seven and sometimes they'd be upand you have to, you know, uh,
(11:56):
fight your way through the daybecause somebody would be trying
to fight with you.
And you know, you didn't, if youhad your own stuff, people would
bring stuff for me or it wouldbe gone.
It was still at, or the innerstaff would still it or tear it
up.
They'll go to your, they have atemper can go to your room and
(12:20):
just tear up everything.
You know, these
Speaker 2 (12:24):
Do not sound like very enriching places for people
to live.
We know, and working with peoplewith disability that certainly
talking and working with Cindypeople don't want to live there.
And like I said, in thebeginning, other states have
actually closed the door on thispart of history and they don't
(12:45):
have state institutions.
Can you tell us like what otherstates are doing it a little bit
about what you know about howthey've done it
Speaker 3 (12:54):
I've been, I believe 11 states that have completely
closed all of their remainingstate institutions.
So there, I think 11 stateswhere this model of how you, um,
how you provide people withdisabilities, some support, and
I would argue as you shouldstart really support, um, is
(13:16):
gone.
This does not exist.
Um, and then there are stateslike Wisconsin that have
dramatically moved from thestate institutional model.
We have just a remnant of, ofthose 375 people, three
facilities, um, down fromthousands of people spending
their entire lives in these, inthese places.
(13:39):
Um, and we've, we've found a wayto support people in their own
homes and in the community.
Um, and people in Wisconsin havevoted with their feet.
Families have decided that theydon't really want to put their
loved one with a disability in afacility where they are reliant
(14:02):
on somebody else.
They want to have higherexpectations.
They want their child who isgoing to school after the
Americans with disabilities act,have the same expectations as
they do for their able-bodiedchildren.
And Cindy is great proof that,you know, when somebody believes
in you and you get the rightopportunities to man, you can
(14:25):
run your own organization.
You can, you can do all sorts ofthings.
There's difference between beingallowed to do something and
being supported.
And there are unfortunately afew states that really haven't
moved away from this model asmuch as they should.
Um, some of our neighbors inthe, into the south still very
much overly rely on large scalefacilities as their PR is as one
(14:49):
of the main things that they dofor people with disabilities.
When we talk about family careand Iris in Wisconsin, those are
home and community-basedlong-term care programs.
And that has been the differencefor a lot of folks in our state
and the children's longtermsupport programs of how folks
many with even very complexneeds can be supported well and
(15:14):
acts, and really thrive andreach their goals and their
expectations and do more thanthey ever thought they were
going to simply because they hadthe right support in the
community.
Um, and most of the country hasseen the light to move away from
institutions and more towardshome and community-based care,
even though those two thingsaren't necessarily funded at
(15:35):
this in the same way, at thesame level that they need to be.
Um, but families and states haveseen the writing on the wall
that it is far better for theperson and far less costly for
the state to be able to supportpeople in their own homes and
have them as living thriving,working employees, contributing
(15:55):
back to the society instead ofbeing warehoused in a place
where none of those things canhappen.
You know,
Speaker 2 (16:03):
I'm sitting here shaking my head because it's
such, it's such common sense,right?
Like it makes sense that, um,people with disabilities want to
live in the community and havefriends and connections and, um,
you know, have more choices intheir life.
And like Cindy has a pet andthings like that that would
(16:23):
never be allowed in aninstitution.
And then Tammy, you bring upthat other states have just seen
the dollar signs like this doesnot make fiscal sense to be
putting money into these biginstitutions.
So Cindy, I've heard you talkabout this issue many, many
times.
Um, and you're very passionateabout this, not just based upon
your personal experience, but Iknow that you have you feel for
(16:46):
the people that still live
Speaker 4 (16:47):
In that.
Speaker 2 (16:49):
What do you want policy makers to know about what
people with disabilities want?
Speaker 4 (16:57):
I think they need to listen to the person with the
disability if they're in thatinstitution.
Uh, I know the one I'm at thatwas that I know there's people
that can talk with herselfthere.
I do know this who have did alittle homework on some of the
people there, um, is that theyneed to ask people, they need to
(17:19):
go in there, not this, you know,they send me people in here to
check out the violations and allthat, but do they never really
talk to the people?
Well, as Jennifer Kern alwaysused to say, they'll remember
nothing went out, what elsewithout us.
So I feel that the buildings outat the center that I was at, you
(17:47):
know, having the buildingsthey're gonna crumble, you know,
they're gonna crumble one day.
They're just going to get theirold now going, you know,
institution that institution wasbuilt back in the 19 hundreds.
People should not be living inno kind of situation.
And maybe, but I don't think allthose buildings are off to
(18:07):
coding and the people living inthose, in the buildings.
And second thing, I think Idon't call that a home with
flowers in that, you know, I'velooked on her website and people
talk, oh, this is no, they needto be out in the community.
Lot cheaper.
There is people in Metro service, medical needs, they can live
(18:29):
in the community.
They don't need to be there.
There's lots of things out inthe community.
If they're feeding children orwhatever, we, it can happen.
I think we got a good medicalsystem in our, in our, in our
state.
And I think politicians need to,you know, go out there and visit
(18:51):
for theirself.
They need to be over in Northernand central or north Norton or
no.
Well, they're in a ventral andthey're still, yeah, right.
They need to go out there.
We're wasting a lot of money,which I think makes no sense
when we got, uh, you know, um,budgets red here in Wisconsin,
(19:16):
in Milwaukee or in the state, wecould use that money to house,
better housing, better,everything for everybody and in
balanced the budgets.
But no, they rather spend whatis a fourth, how much it is.
(19:37):
Oh, I forgot how much it is forone person.
That's a lot of money.
And I mean, what kind ofservices are they really it's
Speaker 2 (19:46):
Over$1,300 a day.
I don't know if Tammy has a moreupdated figure.
Speaker 4 (19:51):
Right?
I think it's ridiculous.
I mean, we talk about, there'sno money in the state, but we're
paying for two institutions thathave hardly no people in it.
I w I, my dream is while I'malive and I'm real, I'm planning
on being here so late I'mhundred.
(20:12):
I like to see some moment formyself and the next I know, four
or five years, I think we needto keep on them.
I'm not going to let them justtell me, you know, oh, you know,
we're going to keep them open.
I'm going to bug them until theyclose them.
And the people first inWisconsin do not believe in a
(20:34):
segregated places.
And then they, they, they stillgot some, they got life yet.
They're alive and breathing.
They have, they have a, howwould I put it?
They have, they can come out andenjoy their life.
What's left of it.
We don't know when our last dayon this earth is, but they
(20:57):
they're so grieving and theyshould have the chance to be
like, I am, they don't have tobe like me per se, but they can
have a pet if they wanted to,they can live in an apartment
and enjoy, you know, a cup ofcoffee at a coffee shop.
And how many people go to acoffee shop there?
How many people get to goshopping or go to the Zillow or
(21:19):
whatever.
Like I like we do.
So I just, I just want them tobe free.
We there's no more room forthose institutions.
They need it's, it's over.
It's when our young people arenot in people that are being
born now to parents.
(21:40):
They're not putting their son ordaughter in the antidotes and
they want them, like you said,in the community with their
siblings.
So, you know, and have a greatlife.
So, but let's ask
Speaker 2 (21:52):
Tammy what the next steps are.
So teeny, I was just looking atmy notes.
It takes about 1500 staff to runthe institutions.
And in the last budget alone,the governor asked for more
than, I think, 45 million justto repair some of those old
buildings like Cindy said.
So like, it's not like it's justthe cost day to day.
It's like, what's the future.
(22:12):
So what Timmy, what are your,what are your ideas to leave our
listeners with, um, like whatthey can do?
What, what are some actions foradvocates?
Speaker 3 (22:24):
You know, I, I think you're right, those figures are
staggering.
It costs about$120 million ayear just to operate our current
three institutions that havefewer than 375 people in them.
And there's a lot of regulationsthat come with state
institutions as there should be,because we know what happens
when there aren't, um, there's alot of regulations that require
(22:47):
24, 7 staffing and other thingsbecause abuses and neglect have
happened in institutions.
And I think say, you know,Cindy's, Cindy's testimony kind
of, kind of paints the pictureof what that environment is.
And you're right.
There have been, um, just thislast budget,$40 million just to
repair buildings, to bring themup to livable code.
(23:10):
So Cindy's right.
When she's talking aboutcrumbling buildings, there are
certainly many parts of thatcampus right now that are
uninhabitable.
And we really are at a decisionas a state of, do you invest
millions of millions of dollarscontinually until there are zero
people in the institution?
Or do you say it's really timeto close the chapter on this
(23:33):
outdated model and pick up timeto do it and plan for it and
make it happen?
Um, there are many, many peoplewho have, who are complex, who
never went into institutions.
Our last long-term admission inthe state, uh, was in 1984.
So there, there have been no newentries into this, into these
(23:54):
institutions for decades.
And we figured out it's not thatpeople got less disabled it's
that we figured out that thereare lots of ways that we can
support people with significantdisabilities to be in the
community and oftentimes be aproductive members of the
community.
So it really is a matter ofwhere do you want to invest your
(24:19):
dollars?
And I think there are lots ofpeople who live in the community
who would say we would benefitmore as a state.
If we closed down thesefacilities and invested that
money into better care foreverybody who is in family care
and Iris and children'slong-term care, help those folks
(24:43):
help the folks that are in theinstitutions now, as Cindy says,
move out and find a place andenjoy some of the things that
the community has to offer thatmay not have been part of their
lives.
Certainly when Northern closefrom a large-scale facility into
a smaller scale facility, manyof the people who relocated and
many of their parents hadguardians, 80% of them said,
(25:05):
Hey, that our folks have betterquality lives.
And holy cats, we should've donethis earlier.
Um, so we do have the experiencein the recent past of what it
means to transition people outof an institutional setting.
And we know that they canthrive.
It's time to do that for theremaining folks who are there.
(25:28):
It, whether it's consolidatingfrom two institutions into one,
whether it's finding, you know,a way a pathway for those folks
to go into the community, manyof these folks are now older.
You know, there, there are lotsof things that we could do if we
committed as a state to moveaway from that model.
(25:49):
And I think the time is, if it'snot now, it's pretty soon, you
know, like our choices arereally, do you wait until the
last person who's a residentexpires or do you off, or do you
decide that you're going to makea movement earlier than that?
And I say we're long past due.
(26:12):
Um, I have a kind of simple rolein public policy.
It's, it's a couple of simplerules.
And one is, if you're doingsomething as a public policy for
people with disabilities thatyou would not consider to be
fair gesture, right?
For somebody who doesn't have adisability give, probably need
to rethink it.
And nobody institutionalizedable-bodied people.
(26:34):
And the second rule is, are youmaking people's lives better or
harder?
And I don't.
I think the evidence is reallythat institutions don't
necessarily make people's livesbetter.
They are a place where the rulesare set by somebody else and you
learn to exist by those rules.
(26:55):
And that is not what we expectfor able-bodied folks.
So in order to move away fromthis model, you really do need
to stop doing it.
And, and this is, this is thetime where the legislature can
make a decision to move awayfrom this model.
And they should, um, if not,now, they're going to have to
make a decision at some point,and it should be sooner than
(27:18):
later.
Sure.
Speaker 2 (27:20):
I mean, we could talk about this for a really long
time.
I think this has been a greatconversation.
I, you know, I'm hoping that thepeople listening will, um, think
about those, you know, peoplewho are living there and what
they might be able to do toadvocate, you know, I, I like to
end my podcast with sometakeaways and I wrote down it's
(27:40):
time, close the chapter longpast due and set them free.
Cindy, I'm going to give you thelast word.
What do you want to say aboutthis?
Our people bring our people,bring our people home, huh?
Yeah.
Okay.
Thank you both for joining metoday and thank you to our
(28:01):
listeners for listening to thearc experience podcast until
next time
Speaker 1 (28:07):
Today's episode of the art experience was brought
to you by the arc Wisconsin, thestate's oldest advocacy
organization for people withintellectual developmental
disabilities and their familiesit's funded in part by the
Wisconsin board for people withdevelopmental disabilities.
Our theme music called speciesis the property of[inaudible]
(28:28):
and cannot be copied ordistributed without permission.
It was produced by EleanorCheetham, composer and artist
with autism.
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