Free Our People: Turning the Page on Wisconsin's State Institutions

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.

Transcript

Speaker 1: 0:05

Welcome to the arc experience, featuring the stories of self advocates with disabilities and their families from around Wisconsin. Be inspired. Take action. And now for today's episode,

Speaker 2: 0:22

Hello and welcome to the art experience podcast. I'm your host Lisa pew with the arc Wisconsin. And today we are talking about a Wisconsin fact that is not really well known, but it's really pretty important to people with disabilities. Some might actually call it a dark secret. It's a piece of history that frankly should be forgotten. And while many states have made decisions to do just that Wisconsin seems stuck in the past. So 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 literally been open since the 19th century. So why let's learn about it from our guests today, Tammy Jackson and Cindy Bentley, Tammy is an experienced public policy analysts working on public policy issues, important to people with intellectual and developmental disabilities and their families at the state and federal level. She leads the Wisconsin board for people with developmental disabilities policy work. And then Cindy, she's born with an intellectual disability. She spent much of her childhood at Southern Wisconsin center for the developmentally disabled is what it's called. No one expected her to learn the skills necessary to live on her own. But now she runs a statewide organization as the executive director of people. First, Wisconsin. She lives in neuro and apartment with her cats. And, um, she's a self advocate leader in Wisconsin and the nation. So welcome to both of you for joining the podcast today. Thanks for having us. All right. Let's get started. So, Tammy, um, first I want to kind of set the stage with some facts. Can you give us a little background on the, um, Wisconsin's history with these state institutions?

Speaker 3: 2:15

What was Cotsen followed suit with many other states in our country's history in the 19th century? Um, the public policy for people with intellectual and developmental disabilities was to put them in state run, state funded campuses called institutions for their whole lives. That is what we did for people with disabilities. Um, so we were not unique as a state. In fact, this was, um, in the 19th century considered to be a, an actual development, um, that people would go someplace and be cared for. Um, not unlike the orphanages you hear about for the same time and other poor houses. There was a big movement of put people in centralized locations for various reasons, and then you can take better care of them. That was the idea at the time. And what we know now is that that kind of concentrated setting tends to bring with it a whole bunch of things that aren't so good. Um, and Wisconsin operates still operates, three state funded and Medicaid funded institutions, um, state taxpayer dollars go to pay for, um, all of the buildings and the maintenance and all the costs of running those facilities at all of the 24, 7 day a week staffing, um, every on and all of the care that that residents received there. Um, we used to have thousands of people who were living permanently in these state institutions. Um, now we're down to a little over about 375 people in the state still live in our three state institutions. Um, but it's certainly a legacy that has is ongoing, um, even 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 running these, these large-scale facilities, it was really investigative reporting that happened in the seventies that exposed what the abuses and neglect that people living in these places face Willow Brook is a institution in New York that really spurned the movement away from institutions as the way we should have public policy, what our public policies should be for, for people with disabilities. And that is within living memory that, that ha that expos they happened. It was Geraldo Rivera, who, who actually, um, expose that. And, um, you know, since that time there's been kind of an awakening that these types of large-scale facilities bring with it, certain kinds of practices that really do lead to people, having few choices in their lives and, and, um, and really not being able to, uh, fulfill the potential that they have.

Speaker 2: 5:22

I'm sure that was a public policy that seemed to make sense back in the day. And, um, over time it just got bad for people or maybe people w woke up to what, what was really happening there is what I think you're saying, you know, prior to,

Speaker 3: 5:40

When you think about the 19th century, it was a really different time prior to state institutions. They put people with disabilities in prison because that was the place that you had. That was a location. So I guess from, from that perspective, rather than imprisoning in a prison that had bad conditions in it, just because they had a disability that because they didn't commit any crime, it must've seen better to put people in a very similar kind of setting that was only for people with disabilities, where you could make 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 of folks caring for them and no choices, um, it really wasn't better. It was the same as just a different flavor. Right, right.

Speaker 2: 6:31

And, you know, unfortunately, Cindy, I know that, you know, just like Tammy said about the Willow Brook story, which is in recent memory, I know this is part of your story that you, as a child spend time in one of these Wisconsin institutions. And I wonder, you know, how do you look back on that time in your life, Cindy? Cause I know that's really, um, been part of the passion of your work now.

Speaker 4: 6:58

Um, I'm surprised I survived to stay the institution. You know, I, I know a lot of my friends did not survive, um, out there. Um, you know, they told me, you know, I wasn't gonna amount to anything, but I just kept on pushing myself and fighting for myself. They didn't do a lot of listening out there to people like myself. I was sent out to a regular school, which I'm very thankful for. And I was on their, on ground schooling and a teacher there, which now is deceased, you know, told me I was lazy and all that, 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, you know, nothing really worked when they would send me out to these places because those people worried or were mean too. So I

Speaker 2: 8:07

See, what did it look like living there? Like what was your day?

Speaker 4: 8:11

It was, it was, uh, it was a horrible. Yeah. It's like, you know, I wouldn't say horrible, but horrible enough is that, um, well, you know, you get up four 30 in the morning, four o'clock whenever they wanted to get you up to wait to have Ralph as at seven o'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 a conversation where you could buy regular sweet, but you had to have money to do that. So we didn't have anybody putting money on a card for you. Um, you didn't have, you couldn't buy any of that stuff. So, um, and you know, they gave you a snack. It wasn't great snacks. And um, what do you think on they call them day room. So he watched TV hollered when I was out, mostly in school. So I was at that school age, so going to school every day. And then as I got older in that center and grow, I know out of the school system and their school system, they had workshop there, which was so boring, you know, we worked scales. And the only thing I could say about that worst skill program was she said, I can work in a factory when I got out of the Southern center, you know, and Southern center to psychology. No, she needs to go, no, she needs to go to a shelter workshop. You know? So that's where I lined it up in a sheltered workshop out of this center, which was in worser. I think group homes are worse or too. Cause when rad from a big institution to a small institution in a group home still had rows and still have, you know, this and he couldn't do 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 telling me 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 Southern senators. Oh man. I just thought, okay. It couldn't be any better oatmeal. So, um, about five years ago, um, my, um, friend had made some 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 good because I need the vitamins and I made myself like any, so I'm eating oatmeal again, not grim away though. That's

Speaker 2: 11:21

Good to know. Well, I mean, I think, and it sounds also like low kind of some low expectations were set for you. If everybody in the, in the S in the 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 to special Olympics, you want to year program, but you're back with a bunch, you know, I don't know how many is any Yona and maybe I want to say about six or seven and sometimes they'd be up and you have to, you know, uh, fight your way through the day because somebody would be trying to fight with you. And you know, you didn't, if you had your own stuff, people would bring stuff for me or it would be gone. It was still at, or the inner staff would still it or tear it up. They'll go to your, they have a temper can go to your room and 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 people with disability that certainly talking and working with Cindy people don't want to live there. And like I said, in the beginning, other states have actually closed the door on this part of history and they don't have state institutions. Can you tell us like what other states are doing it a little bit about what you know about how they've done it

Speaker 3: 12:54

I've been, I believe 11 states that have completely closed all of their remaining state institutions. So there, I think 11 states where this model of how you, um, how you provide people with disabilities, some support, and I would argue as you should start really support, um, is gone. This does not exist. Um, and then there are states like Wisconsin that have dramatically moved from the state institutional model. We have just a remnant of, of those 375 people, three facilities, um, down from thousands of people spending their entire lives in these, in these places. Um, and we've, we've found a way to support people in their own homes and in the community. Um, and people in Wisconsin have voted with their feet. Families have decided that they don't really want to put their loved one with a disability in a facility where they are reliant on somebody else. They want to have higher expectations. They want their child who is going to school after the Americans with disabilities act, have the same expectations as they do for their able-bodied children. And Cindy is great proof that, you know, when somebody believes in you and you get the right opportunities to man, you can run your own organization. You can, you can do all sorts of things. There's difference between being allowed to do something and being supported. And there are unfortunately a few states that really haven't moved away from this model as much as they should. Um, some of our neighbors in the, into the south still very much overly rely on large scale facilities as their PR is as one of the main things that they do for people with disabilities. When we talk about family care and Iris in Wisconsin, those are home and community-based long-term care programs. And that has been the difference for a lot of folks in our state and the children's longterm support programs of how folks many with even very complex needs can be supported well and acts, and really thrive and reach their goals and their expectations and do more than they ever thought they were going to simply because they had the right support in the community. Um, and most of the country has seen the light to move away from institutions and more towards home and community-based care, even though those two things aren't necessarily funded at this in the same way, at the same level that they need to be. Um, but families and states have seen the writing on the wall that it is far better for the person and far less costly for the state to be able to support people in their own homes and have them as living thriving, working employees, contributing back to the society instead of being warehoused in a place where none of those things can happen. 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 have friends and connections and, um, you know, have more choices in their life. And like Cindy has a pet and things like that that would never be allowed in an institution. And then Tammy, you bring up that other states have just seen the dollar signs like this does not make fiscal sense to be putting money into these big institutions. So Cindy, I've heard you talk about this issue many, many times. Um, and you're very passionate about this, not just based upon your personal experience, but I know that you have you feel for 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 that institution. Uh, I know the one I'm at that was that I know there's people that can talk with herself there. I do know this who have did a little homework on some of the people there, um, is that they need to ask people, they need to go in there, not this, you know, they send me people in here to check out the violations and all that, but do they never really talk to the people? Well, as Jennifer Kern always used to say, they'll remember nothing went out, what else without us. So I feel that the buildings out at the center that I was at, you know, having the buildings they're gonna crumble, you know, they're gonna crumble one day. They're just going to get their old now going, you know, institution that institution was built back in the 19 hundreds. People should not be living in no kind of situation. And maybe, but I don't think all those buildings are off to coding and the people living in those, in the buildings. And second thing, I think I don't call that a home with flowers in that, you know, I've looked on her website and people talk, oh, this is no, they need to be out in the community. Lot cheaper. There is people in Metro service, medical needs, they can live in the community. They don't need to be there. There's lots of things out in the community. If they're feeding children or whatever, we, it can happen. I think we got a good medical system in our, in our, in our state. And I think politicians need to, you know, go out there and visit for theirself. They need to be over in Northern and central or north Norton or no. Well, they're in a ventral and they'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, in Milwaukee or in the state, we could use that money to house, better housing, better, everything for everybody and in balanced the budgets. But no, they rather spend what is a fourth, how much it is. Oh, I forgot how much it is for one person. That's a lot of money. And I mean, what kind of services are they really it's

Speaker 2: 19:46

Over$1,300 a day. I don't know if Tammy has a more updated figure.

Speaker 4: 19:51

Right? I think it's ridiculous. I mean, we talk about, there's no money in the state, but we're paying for two institutions that have hardly no people in it. I w I, my dream is while I'm alive and I'm real, I'm planning on being here so late I'm hundred. I like to see some moment for myself and the next I know, four or five years, I think we need to keep on them. I'm not going to let them just tell me, you know, oh, you know, we're going to keep them open. I'm going to bug them until they close them. And the people first in Wisconsin do not believe in a segregated places. And then they, they, they still got some, they got life yet. They're alive and breathing. They have, they have a, how would I put it? They have, they can come out and enjoy their life. What's left of it. We don't know when our last day on this earth is, but they they're so grieving and they should have the chance to be like, I am, they don't have to be 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 of coffee at a coffee shop. And how many people go to a coffee shop there? How many people get to go shopping or go to the Zillow or whatever. Like I like we do. So I just, I just want them to be free. We there's no more room for those institutions. They need it's, it's over. It's when our young people are not in people that are being born now to parents. They're not putting their son or daughter in the antidotes and they want them, like you said, in the community with their siblings. So, you know, and have a great life. So, but let's ask

Speaker 2: 21:52

Tammy what the next steps are. So teeny, I was just looking at my notes. It takes about 1500 staff to run the institutions. And in the last budget alone, the governor asked for more than, I think, 45 million just to repair some of those old buildings like Cindy said. So like, it's not like it's just the cost day to day. It's like, what's the future. So what Timmy, what are your, what are your ideas to leave our listeners with, um, like what they can do? What, what are some actions for advocates?

Speaker 3: 22:24

You know, I, I think you're right, those figures are staggering. It costs about$120 million a year just to operate our current three institutions that have fewer than 375 people in them. And there's a lot of regulations that come with state institutions as there should be, because we know what happens when there aren't, um, there's a lot of regulations that require 24, 7 staffing and other things because abuses and neglect have happened in institutions. And I think say, you know, Cindy's, Cindy's testimony kind of, kind of paints the picture of what that environment is. And you're right. There have been, um, just this last budget,$40 million just to repair buildings, to bring them up to livable code. So Cindy's right. When she's talking about crumbling buildings, there are certainly many parts of that campus right now that are uninhabitable. And we really are at a decision as a state of, do you invest millions of millions of dollars continually until there are zero people in the institution? Or do you say it's really time to close the chapter on this outdated model and pick up time to do it and plan for it and make it happen? Um, there are many, many people who have, who are complex, who never went into institutions. Our last long-term admission in the state, uh, was in 1984. So there, there have been no new entries into this, into these institutions for decades. And we figured out it's not that people got less disabled it's that we figured out that there are lots of ways that we can support people with significant disabilities to be in the community and oftentimes be a productive members of the community. So it really is a matter of where do you want to invest your dollars? And I think there are lots of people who live in the community who would say we would benefit more as a state. If we closed down these facilities and invested that money into better care for everybody who is in family care and Iris and children's long-term care, help those folks help the folks that are in the institutions now, as Cindy says, move out and find a place and enjoy some of the things that the community has to offer that may not have been part of their lives. Certainly when Northern close from a large-scale facility into a smaller scale facility, many of the people who relocated and many of their parents had guardians, 80% of them said, Hey, that our folks have better quality lives. And holy cats, we should've done this earlier. Um, so we do have the experience in the recent past of what it means to transition people out of an institutional setting. And we know that they can thrive. It's time to do that for the remaining folks who are there. It, whether it's consolidating from two institutions into one, whether it's finding, you know, a way a pathway for those folks to go into the community, many of these folks are now older. You know, there, there are lots of things that we could do if we committed as a state to move away from that model. And I think the time is, if it's not now, it's pretty soon, you know, like our choices are really, do you wait until the last person who's a resident expires or do you off, or do you decide that you're going to make a movement earlier than that? And I say we're long past due. Um, I have a kind of simple role in public policy. It's, it's a couple of simple rules. And one is, if you're doing something as a public policy for people with disabilities that you would not consider to be fair gesture, right? For somebody who doesn't have a disability give, probably need to rethink it. And nobody institutionalized able-bodied people. And the second rule is, are you making people's lives better or harder? And I don't. I think the evidence is really that institutions don't necessarily make people's lives better. They are a place where the rules are set by somebody else and you learn to exist by those rules. And that is not what we expect for able-bodied folks. So in order to move away from this model, you really do need to stop doing it. And, and this is, this is the time where the legislature can make a decision to move away from 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 later. Sure.

Speaker 2: 27:20

I mean, we could talk about this for a really long time. I think this has been a great conversation. I, you know, I'm hoping that the people listening will, um, think about those, you know, people who are living there and what they might be able to do to advocate, you know, I, I like to end my podcast with some takeaways and I wrote down it's time, close the chapter long past due and set them free. Cindy, I'm going to give you the last word. What do you want to say about this? Our people bring our people, bring our people home, huh? Yeah. Okay. Thank you both for joining me today and thank you to our listeners for listening to the arc experience podcast until next time

Speaker 1: 28:07

Today's episode of the art experience was brought to you by the arc Wisconsin, the state's oldest advocacy organization for people with intellectual developmental disabilities and their families it's funded in part by the Wisconsin board for people with developmental disabilities. Our theme music called species is the property of[inaudible] and cannot be copied or distributed without permission. It was produced by Eleanor Cheetham, composer and artist with autism.