Latest / The Relentless Pursuit of Winning Podcast / From Injustice to Inclusion: Why Community-Based Care Matters for People with Disabilities | Robert Stack

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From Injustice to Inclusion: Why Community-Based Care Matters for People with Disabilities | Robert Stack · The Relentless Pursuit of Winning Podcast

0:00
Moral outrage, that people with disabilities can be put in such a horrific place.
0:04
It did not happen a long time ago.
0:06
It's happening right now as we speak.
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I believe in invisible programs.
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I don't want you to drive by saying,
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that's where they live.
0:15
There's a relationship between the severity of your disability and your level
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Yeah.
0:19
of loneliness.
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Our life is better because of other people.
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When we can get people with disabilities to work with other people and talk
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to other people that really increases their quality of life.
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Silent no longer. That they need to start speaking up for people with disabilities.
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They should have the same rights as everybody else.
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They should be afforded the same opportunities as everybody else
0:58
Hey folks, welcome to another episode of the Relentless Pursuit of Winning podcast.
1:01
My name is Rick Meekins. I'm gonna be your host today,
1:03
and in our studio we have Robert Stack.
1:05
How are you today, sir?
1:07
Great, wonderful to be here. Thank you for inviting me.
1:10
It's good to see you. It's good to see you.
1:11
Folks,
1:12
if you haven't done it already,
1:13
we would love it if you'd like,
1:14
subscribe, hit the bell so that you can get updates every time we drop
1:18
a new episode. Without further ado,
1:20
let's get to it. So Robert, give us a little background,
1:23
who you are, what you do, and why you do what you do.
1:26
Well, thank you for asking. My name is Robert Stack.
1:29
I am the CEO and president of Community Options.
1:33
And I founded the organization about 35 years ago.
1:37
My organization's mission is to develop housing and employment
1:41
for people with significant disabilities.
1:43
I started this in my living room a long,
1:47
long time ago, in in a small row home in Bordentown,
1:50
New Jersey.
1:52
And by myself and then I got friends to become members of my board
1:56
and eventually s and then I went to the state of New Jersey,
2:00
Trenton, and with a $354 check,
2:04
I incorporated community options and fast forward to today,
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we have we support about 6,000 families throughout the country.
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we're in 12 states, we're in over 60 cities.
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And we have about 7500 to eight thousand employees.
2:24
Amazing, amazing, amazing. What what was it what was it that drove you to do that?
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I mean, I I know Borden I I'm from New Jersey.
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I know I know the Bordentown area.
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what what was it what was that thing that said,
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Hey, you know, I need to make a difference here?
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Well, you know, one of my since I was younger,
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I worked and and helped out services for people with disabilities.
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And I noticed how they were marginalized,
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they were p they were segregated.
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They were put in large institutions throughout the country.
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And in Bordentown specifically,
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now that you mention it, the Bordentown had this academy that
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was originally built for segregating black youth.
3:00
And they kept they they they they kept
3:03
people there. They were they were it was a very not a very good pleasant place
3:07
to be. And it was a series of buildings and they eventually moved out
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and they had this giant facility and they opened up the Johnstone Training
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and Research Center in Bordentown.
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And that's where I first really started getting involved in in an institution
3:25
of of that nature in New Jersey.
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I had been involved in New York but this was the first time in New Jersey.
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And there it was crazy.
3:32
They had they did experiments on people all the time.
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It was training and research. So they had a special place called the Yepsen Unit,
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which was a prison where they kept people with disabilities who were bad,
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and as they would phrase it. And they would keep them in these these cells,
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and it was horrific. And as soon as I saw it,
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I was very young at the time. I was in I was not even 30,
4:00
and I said,
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actually I was in my twenties and I said,
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This place has to be closed. It's horrible.
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And then they had the Hayes unit,
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which was for people that were blind and deaf.
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And that was also bad. But the worst,
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Goodness.
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the most disgusting thing they would do is they would give people
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who live there milkshakes, and the milkshakes were laced with fetus hepatitis,
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and then they would give them hepatitis and they would try different experiments.
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to see what they could do to if to s to try to cure hepatitis.
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And yeah, it was it was they were called them fecal shakes.
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my goodness.
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And the people didn't know it at all.
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And it was run by a absolutely horrific man who isn't there anymore.
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He passed away a long time ago.
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And it was it was it was just not not a good facility.
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And I was so glad to help close that institution.
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And get the folks that lived in there into into a community based programs.
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Wow, wow, wow. That's that's that's that's horrific.
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That's that's terrible. I've I'm I'm I'm glad that you did that.
5:03
I'm glad that you were able to make a difference.
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You know, what what does it take though?
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I mean, to to have a vision to me,
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that sounds like you had a very big vision to make a very big difference.
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I mean, what what does it take you know,
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not only to kind of craft that vision,
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but also to pursue it with the assumption that,
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hey, you can get this done.
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I think right now, even to this day,
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I am struck with the same situation I was a long time ago.
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Moral outrage. Moral outrage,
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I I just became outrageously morally it was so objectionable that people with
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disabilities can be put in such a horrific place.
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You know, and you said New Jersey,
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so as long as we're in New Jersey,
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let's let's stay with New Jersey.
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I there's still there's still institutions.
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There's an institution in southern New Jersey called
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the Vineland Developmental Center.
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in Vineland, New Jersey, Southern New Jersey.
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Okay.
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It used to be called the Vineland State School for Feble-minded women
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of childbearing age. Now, seriously,
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I'm agreeing.
6:01
and and the Vineland Developmental Center has now an East Campus and a West Campus.
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So let's stop for one second. It was all women,
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right? But the thing that's interesting is East Campus,
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Mm-hmm.
6:12
West Campus, in the 80s, 70s,
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and 60s, it was called the main campus
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And the colony.
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Yes. Because they not only segregated you by sex,
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they segregated you by race. And I went there and I met like this superintendent
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of the institution, the head of it.
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And I write about it in my book.
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And I t he reminded me of I don't know if your audience is as old as I am,
6:38
of W. C. Fields, you know. He had that look of the bulbous nose and
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he drank too much alcohol. And I said to him,
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They you're gonna have to get this institution closed.
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And he said,
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But the people are happy. They're happy,
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happy, happy. They they they cut the lawn,
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they take care of things, all the girls do everything we need them to do.
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And I said, Yeah, but they don't get paid.
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And and he had his own giant house on the grounds of this institution.
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Mm-hmm.
7:07
Kind of sounds a little like a plantation,
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doesn't it? And it still exists now.
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Mm-hmm, it does.
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And the governor of New Jersey now.
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And the governors all along have always said,
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this is okay. And they let this this entire facility operate just like that
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for women. And if you go farther south,
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near Cape May, New Jersey, there's the there's the the Woodbine School.
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It was called the Woodbine Developmental Center,
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but it used to be called the Woodbine Colony for Boys.
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Yeah, so I mean, just the the the nomenclature of the words should just sum up.
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wow.
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the whole thing. I I just find it fascinating that we're s this
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is two thousand twenty six and I'm still talking about this.
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And when I talk to people about this who are younger or or or or they go like,
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well that happened a long time ago.
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It did not happen a long time ago.
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It's happening right now as we speak.
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That's ridiculous. That's absolutely that's that's horrifying.
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That's mortifying. I'm from South Jersey.
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You know, I was b I was born and raised,
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you know. I kind of heard of these things,
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but it was like there's no, you know,
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there was there was no real connection to,
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you know, exactly what it was.
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I mean, everything I guess goes around in kind of rumors,
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you know. ~ My gosh,
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Yeah. Yeah. Yeah. Yeah. Yeah.
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my gosh. Wow, so so so moral outrage drove all of this.
8:27
So you decided there was a problem.
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And I w I wanna look at this. I wanna kinda walk through like
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an entrepreneurial journey, you know,
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with building this thing. And then I don't want to get into a little
8:36
bit more about your book. Is that is that okay with you?
8:39
Sure.
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Fantastic. So you you had this moral outrage.
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You said, okay, I wanna do something.
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What what would what were your steps?
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How did you, you know, mobilize is really what it comes down to.
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Well, I I knew I had to figure out a way to get people out of these institutions.
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and and I s I I went to I I went to the Johnstone place
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Mm-hmm.
9:01
in in New Jersey, and at the time the governor was Governor Florio.
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Governor Florio was having a problem.
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His problem was he couldn't make ends meet with his budget.
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He he he was a funny governor,
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he's passed away.
9:14
He I always laughed because he hated insurance companies.
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He made the joke. He'd say, They call themselves the good hands people.
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The question is, what part of your anatomy do they have in their hands?
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But it but in any event, I c I c went to his office and said,
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You could save twenty million dollars,
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which was a lot of money in New Jersey,
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if you closed this institution.
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So they said, How would we do it?
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So we wrote a plan on how to do it and I started taking people out.
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So it was all it was all financially driven.
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It wasn't it wasn't because
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They didn't like the fact that the people were being experimented on,
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because the people were being abused,
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because women in the violent developmental center became pregnant,
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but there were no male people with disabilities that that were there.
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It was because they said, well,
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you know, it's better if we can save money.
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That's why. So I took the people out who a lot of people said would never make
10:04
it in the community. And I found them jobs.
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Mm-hmm. Mm-hmm.
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I found them places to live. I I developed housing.
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And I I didn't have any money at all,
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at all. And I used every kind of you want to talk about entrepreneurial.
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I had very complex funding methodologies.
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It wasn't, you know, I'm not a I'm not a trustafarian,
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you know. My parents, but my dad was a milkman,
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and I certainly didn't have any money from a bank.
10:25
Mm-hmm.
10:27
I didn't have any money at all.
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I my my primary funders were Visa,
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MasterCard, Diners, American Express,
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Sears, whatever I could get a hold of as a credit card.
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And then I'm and then I put took a second mortgage out on my little
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row house so that I could make payroll and said if I could take these people out,
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I could do it. Well, the state said they would they I got a contract with them,
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but the state said okay, but I had to fund it for a while because I needed
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Mm-hmm. Mm-hmm.
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to do that. And that was very complicated.
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I mean, I went to every normal insurance company you could think of for health,
11:02
like Blue Cross, Blue Shield, Aetna,
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all of them. They're all like,
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you don't have even have a track record.
11:07
We're not going to give you any insurance.
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My first insurance company was called Benny Med.
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I used to pray every night that none of my staff got sick because I didn't know what
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they'd be covered or what would happen because it was such a bad,
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bad but I had no no track record,
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no experience, and I had no nothing else to to to hold on to.
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Did you have experience run it running a business?
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no, not really. No. I I had I had never run anything,
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short of, you know, delivering newspapers or working,
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but I worked for places, but I never really ran anything.
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Everything I learned it was from,
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you know, reading and that was that.
11:43
So so you decided that you have this vision,
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you go out and hire people, you're gonna give put them on payroll,
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you're gonna give them insurance,
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et cetera, et cetera. But it's that's a mighty b that's a mighty big risk.
11:55
I mean, where did you get the guidance for this from?
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Well, it w w no one. I mean, you know,
12:01
I just kind of figured it out how to do it.
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Well, before this, I have to say,
12:04
years ago, the I worked for United Cerebral Palsy,
12:07
which was a nonprofit, and I kinda learned how it worked from them.
12:09
Okay.
12:11
And I learned what was bad and what was good in the sense that they were a large,
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large, well-known nonprofit, but they were individually operated,
12:18
Mm-hmm.
12:20
so they spent a lot of money needlessly on accounting and on a lot of other things.
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I knew that if I could do it s if I could do it where it was a single entity,
12:29
I could save money on that sort of thing and and I would do that.
12:33
And I was the youngest I was I got my first job as in a high level executive
12:37
director when I was in my twenties as the executive director
12:40
of United Cerebral Palsy of New Jersey,
12:42
which by the way was fifty thousand dollar budget,
12:45
hundred thousand dollar deficit,
12:47
and the board hadn't met in three years.
12:48
So I kinda like learned from from from fire by baptism,
12:53
you know, what what
12:53
Yes.
12:54
going
12:55
on there. But I learned what they did right and what they did wrong and
12:58
I took the best practices and I turned it into community options.
13:02
Nice, nice. And did you start this organization as a not for profit or
13:05
was it how did how did that come how did you make a decision about that?
13:10
Well, you know, w I sat in my literally my little row home and I said,
13:13
F profit, nonprofit, profit, nonprofit.
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And I thought, well, you know,
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why do why would I set it up as a for profit?
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Because I I I wasn't doing it for the money.
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And I never thought that I would actually even do anything with it.
13:24
And then I thought, well, if I got nonprofit,
13:26
I'd be able to to come to people like you and people in your audience and say,
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Can you contribute to helping advance this who weren't,
13:34
you know, trying to get money back?
13:35
And I also felt that, you know.
13:36
Yeah.
13:37
I could I could I could probably apply for grants from different foundations
13:42
and and and and hopefully do it that way.
13:45
So I called, you know, so I so I literally called,
13:47
you know, six of my friends who I went to college with,
13:51
grow grow grew up with and said,
13:53
you know, I'm gonna start this company,
13:54
Community Options. Can I put you on the board?
13:56
And they said, sure. And they didn't give me any money,
13:58
but they at least lent me their their name and it helped with
14:02
the fiduciary responsibilities associated with the organization.
14:05
Mm mm. When you when you set up your board,
14:08
I'm I'm I'm gonna say we 'cause I've worked with not for profits before.
14:12
So so we typically recruit friends and family.
14:14
Did you have expectations for them when you started the board or was
14:18
it just you know just for paperwork say?
14:20
No, well I had a b they they had a variety of backgrounds and so I tried
14:25
to to hone in on those backgrounds and I really tried to give them,
14:29
you know, tasks that I wanted them to do.
14:31
Now whether they my my one of my chairs was wa was a vice president of Hershey,
14:36
and he was my roommate in college.
14:38
And I kept on trying to get him to get money from the Hershey Foundation
14:42
and he tried, but he never did.
14:43
Yeah.
14:44
another
14:44
guy was head chef at a restaurant called Elaine's,
14:46
which was, you know, f a famous Manhattan bistro and he he had
14:50
his own restaurant and I I asked him to help me with that and he would
14:54
he would try to get, you know,
14:55
you know, people who were celebrities involved,
14:58
but it never really happened. So you know,
15:01
there were people that I tried to get involved in and th they were
15:03
all wonderful people and they all supported me ~ mentally and they all kind
15:07
Mm-hmm.
15:08
of like acted like a psychologist to me,
15:10
if you will. But
15:12
They weren't able to financially help me at all because none of them really
15:14
had any significant levels of of money.
15:18
Yeah, yeah, yeah. How d how did it feel,
15:20
you know, being executive director essentially and having to wear like multiple hats
15:25
until this vision until you you know,
15:27
you start getting checked from the state,
15:28
I I guess, right?
15:30
Yeah, it was it was extremely difficult.
15:32
And and even w even when the w when we started getting paid,
15:35
what the state did was we said,
15:37
look, if you look at an institution,
15:39
like even let's take today, real time.
15:41
Today you could walk into El Paso,
15:43
Texas, and there's an institution there.
15:46
It costs four hundred thousand dollars a year to live in that institution.
15:50
Think about that. Four hundred you could put them on the Queen Mary
15:51
Wow. Wow.
15:54
for for every day for the whole year,
15:57
and they would have a bet they would get it would be cheaper.
16:00
And they would be able to be on the Queen Mary.
16:01
But they're being they're being they're start they're costing the state
16:04
of Texas between three and four hundred thousand dollars a year per person.
16:07
And I'm showing that I could place those people for sixty thousand dollars with
16:08
Person. Wow.
16:12
a set with staff that would work with them,
16:13
with a small house, and they would live like you and I do.
16:17
So they would live in a small house,
16:18
they would be staffed, they would learn how to do basic things like cook,
16:19
Mm-hmm.
16:23
like you and me, they would learn how to to to you know clean the house.
16:24
Yeah.
16:27
They would get have a regular job or some sort of a thing that they could
16:31
do that would be in the community.
16:32
So they would have this and it would be great.
16:32
Yeah.
16:33
And it would be way, way, way less money.
16:35
So so when I was doing that in the state of New Jersey,
16:38
when I started, they said, okay,
16:40
this is a great idea. I was at the point where I had what was called,
16:43
and I know no one, you're not the audience would have heard of this,
16:45
maybe, it was called the one-write system It was a checkbook where,
16:49
you know, you wrote the the the name,
16:52
Rick Smith and then
16:54
You took out the FICA and the Sue,
16:56
you had to do the calculations,
16:57
and then you wrote out the payroll check and you ripped it off and you gave
17:00
it to your employees. And you know,
17:02
that was that was how I had to start everything in the beginning.
17:04
Yeah.
17:05
So yeah, I was my own bookkeeper.
17:07
I was my own CEO. I was my own HR human resource manager.
17:11
I was doing all my own quality assurance and I was working at night
17:14
and during a day. And I and you know,
17:17
I was on call and I can remember the two o'clock in the morning sleeping,
17:21
and all of a sudden my phone ringing and me running to the phone.
17:24
And the person that opened up the w we opened up our three first three group homes
17:28
and the guy said, We have a problem and I said,
17:31
Okay, what is it? And he said,
17:33
We can't find the plunger.
17:35
Could have been much,
17:39
much worse. ~
17:39
Yeah.
17:41
But yeah, that was the kind of stuff you had to start off with.
17:44
So I had no infrastructure, no one to help.
17:48
And so that's what we did. But it worked out well,
17:50
obviously.
17:52
So so you you started Group Home,
17:54
you know, which in my mind is is gonna be more expensive than,
17:57
you know, some other places. How d how did you get funding for that?
18:00
Well, again, what I did was I went to w my all my houses,
18:04
I have s right now seven hundred and fifty homes.
18:07
And all the homes are no more than four bedroom homes.
18:11
They're there's small houses. and usually and like in depending on what state you're
18:15
in, Pennsylvania, there's usually no more than two or three people that live
18:18
in a home. If you saw any of my houses throughout the country,
18:22
you wouldn't know that they were houses for people with disabilities because
18:26
I believe in invisible programs.
18:28
I don't want you to drive by saying,
18:30
that's where they live. I would rather us be invisible.
18:33
Our vans or our or vehicles, they don't have any logos.
18:36
We don't want to stand out at all.
18:38
We want to just be like a regular house.
18:40
But what I do is I I went originally to bank and said,
18:43
look, I'm gonna buy this house.
18:45
How are you gonna do it? And I said,
18:46
I can amortize the mortgage and the operating contract that I get from the state.
18:50
I'd show them the contract with the state of New Jersey,
18:53
and I would show them that I was getting,
18:53
Yes.
18:54
for example,
18:56
In those days, the forty thousand dollars a person.
18:58
So I was showing $160,000 a year,
19:00
which would cover the staff, it would cover the food,
19:03
it would cover the insurance, and a small portion of it would cover
19:06
the mortgage and the and and the problem I had in the beginning was down payments.
19:11
So I had no money even for a down because you need a 20% down.
19:15
So I would really spend I spent a lot of time initially looking for homes that
19:20
I thought were way, way, way underpriced.
19:23
And then I would try to hammer them more.
19:23
Yeah.
19:25
And then in those days you could go to a bank and the bank would give
19:28
you an app would do an appraisal.
19:29
And if the appraisal was much higher than the actual agreed upon price,
19:29
Mm-hmm.
19:33
they would build in that in and so you could essentially finance
19:37
a house with nothing down. And so for the first several houses,
19:40
I was buying with nothing down.
19:42
Wow, wow, wow. Back in those days,
19:44
what what were some what were some really important operating lessons that that
19:48
you learned?
19:49
that well there there was there was a lot of them.
19:51
But I I would say that one of the things was,
19:54
you know, you have to really you have to always make sure that you're really
19:58
in the the the the the the fundamental granular level with everything.
20:03
You can't just take anybody's word,
20:05
you know, the the old saying, trust but verify.
20:08
You can't and you can't take anybody at face value.
20:11
I mean, people are fundamentally good.
20:13
That I believe. People are not bad people,
20:16
but people don't know better in certain
20:18
Regards. Example, the first few houses I opened,
20:18
Mm-hmm.
20:21
one house had an out just an exorbitant budget for the food.
20:26
And I was really pulling my hair out.
20:29
And the guy there was nice. And I said,
20:31
What are you doing? Give me some of the ideas of what you're preparing for meals.
20:34
And he's like, Beef stroganoff.
20:36
And he's giving me these normal kinds of menus.
20:38
And I'm thinking, that's great.
20:39
Yeah.
20:39
I don't understand, but why is it so expensive?
20:42
So I finally said, Well, why don't I come over for dinner so I could meet everybody
20:46
and hang out?
20:47
And then I realized the guy was a really nice guy.
20:49
He really cared about the people we supported.
20:51
His sister, who passed away, had autism,
20:54
and he was a really nice guy, but he didn't know anything about cooking at all.
20:58
So he bought nothing but frozen dinners.
21:01
No, do you know how expensive frozen dinners can be if you're buying?
21:05
Yeah.
21:06
So that was just sub like, whoa,
21:08
dude, you you gotta buy like a whole chicken and you can,
21:10
you know, and I I had to get down to that level.
21:10
Yeah.
21:13
so those are those are fundamental things that you can't take anything for granted.
21:16
And that you know, and I think that I think that again,
21:20
people pe if you give people a chance,
21:23
they they can amaze you. And you know,
21:25
to have an open mind with some of their ideas.
21:28
I'll never one of the first people with disabilities I took out of institution,
21:32
he was in a wheelchair. And I said,
21:35
What do want to be? And he said,
21:37
when I wanna be an astronaut. Now,
21:40
you know, you might think that that's
21:41
kind of reductive. But the truth of the matter is,
21:44
he it pointed out to me that in space he wouldn't need a wheelchair.
21:49
Yeah, yeah. That's smart.
21:52
So there's yeah, there's a
21:53
lot of interesting yeah, things you learn as as and never did you know,
21:57
th there's a reason behind a lot of their the the comments that they make.
22:01
Yeah, I can imagine. I can imagine.
22:02
I can imagine. One one of the things that you didn't talk about,
22:05
so we've got you know multiple,
22:07
multiple homes, you know, and again,
22:09
we'll stick in New Jersey for the moment.
22:10
you have multiple homes all over New Jersey,
22:12
and you have a model that basically has to be replicated.
22:15
You know, you get the house, you staff the house,
22:17
you bring the people in. I didn't I didn't hear you talk about
22:21
you know really managing that and you know just making sure that each home
22:26
was run in a way that maintained the standards that you set.
22:30
How did you how did you work with that?
22:32
Well, I you know, I wrote I wrote the whole I wrote everything.
22:36
I wrote f everything from the articles of incorporation to,
22:39
you know, the bylaws of the organization,
22:41
but I also wrote like manuals on how to operate a small house.
22:44
Way that I set up the paradigm was I have,
22:48
you know, staff that are hired.
22:49
Those there's there there might be,
22:51
for example, there might be f three people or four people living in a house.
22:54
That means that from seven to three,
22:56
there's like one person on staff,
22:58
three to eleven, there's another person,
23:00
eleven to seven. There's if somebody awake.
23:02
overnight to make sure that if there's a fire or there's a problem,
23:05
they can get them out to safety.
23:07
Those people, those people would report to a so so two or three of those houses
23:11
or four of those houses would report to a person who was called a program manager.
23:15
And that program managers would who at what let's say at four houses would
23:19
eventually report to a director of residential programs.
23:22
And that director of residential programs would report to an executive director
23:26
who was indigenous to the area.
23:28
So if you take New Jersey, there's 21 counties
23:31
And of the 21 counties, we're probably in about 18 of them.
23:34
So we have an executive director who's from Mercer County,
23:37
who lives in West Windsor, NJ,
23:40
and she does a phenomenal job.
23:41
And she and we have someone in Middlesex County and Burlington County,
23:45
and I can go on and on like that.
23:47
So each one, and then all of those folks would report to like a regional,
23:51
to a, to a, to a state director for for New Jersey.
23:54
And that state director would manage all that.
23:57
And then I have a whole side, which is the f the f now it's I have
24:00
an entire financial operation with,
24:02
you know, literally eighty staff who do nothing but payroll and I and
24:06
and do nothing but finance and billing and and and that sort of thing.
24:09
And then I have an a a human resource department,
24:11
which you know has about twenty people who make sure everyone's hired properly,
24:15
trained properly, the background checks are made,
24:17
all of those sorts of things are done as well.
24:21
Yeah, yeah. That's that's I mean,
24:22
that's growth. I mean that's how you grow an organization.
24:24
what what was something that was like difficult?
24:27
You know, something that was unexpected,
24:29
something that went really wrong.
24:30
And how did you come back from it?
24:32
I think the most unbelievable issue,
24:36
the one of the and it was still I'm still recovering from this one,
24:39
is about three years ago, we had hired this really wonderful woman,
24:44
and she was she she had come from a from a rough family.
24:49
She she dropped out of a of a black college.
24:51
She was just a terrific woman,
24:53
and she was a staff person, and she worked with these two people with disabilities,
24:53
Yeah.
24:57
and they were lovely and what and
24:59
They were both severely involved.
25:01
And she was gonna take them to one of our programs in in Hillsborough.
25:06
And this is about three years ago.
25:07
And so she was in one of the vehicles that we had,
25:11
and she was gonna pull out of the road onto Route One,
25:14
which and it was a green light.
25:16
We have video to prove it, and she pulled out in this massive truck going,
25:21
you know, eighty miles an hour with a big wall that was gonna be used
25:24
for some sort of a
25:25
warehouse projectile, like hit them,
25:29
totally incinerated and killed all three of the people.
25:31
yeah. And so we had to deal with that with our families.
25:35
I went to three funerals, and that was just horrific.
25:39
And, you know, the the the the truck driver is,
25:42
you know, being you know in still being on trial or whatever
25:46
and the trucking company and all this other stuff.
25:49
And so we're just you know, to deal with that,
25:51
it was just a tragedy that I couldn't I couldn't do anything to avoid.
25:56
And it was just horrific. And you know,
25:59
I always said, you know, everyone talks about these new self-driving cars,
26:03
these Teslas. If I would have had a self driving car like a Tesla for them,
26:08
it would have automatically stopped when it saw the truck coming.
26:11
And I wish I would have had and you know,
26:13
you you know, you always wish for things that could have happened.
26:16
But I didn't. And so the three people were pass and I had to tell a father that
26:16
Yeah.
26:21
his daughter was incinerated. It was probably one of the most difficult things
26:25
of my life. And as I said, I haven't you you never recover from something like that.
26:30
I I make a point of knowing the people we support.
26:34
I make a point of knowing the staff,
26:36
and it was it was very difficult.
26:38
Wow, wow, wow. I'm so sorry you had to experience that.
26:41
That's wow. That's that's that's life changing.
26:44
That's that's life changing. Wow.
26:45
It is.
26:46
you moved to so you were in New Jersey,
26:49
you're pretty much established there.
26:51
What's what state did you go to first from there?
26:54
Well, we we opened up in we opened up in Pennsylvania and we s we were
26:57
all because it was close. We all went all the way to Pittsburgh.
27:00
We opened up all over. There's sixty seven counties in Pennsylvania and we're
27:05
in a lot of those and and again,
27:07
we developed relationships. We've now we have
27:11
Penns Pennsylvania is the b the biggest state we operate in in the whole country.
27:14
And they're very open-minded. They're very good.
27:17
They only have two institutions left.
27:19
The governor, his name is Governor Shapiro.
27:21
He's a good governor. He cares about what happens.
27:24
his wife has come to see some of our programs,
27:27
and she's a really, really nice lady.
27:29
And they've been giving us a lot of funding.
27:31
And then we were in Maryland, that's been good.
27:33
South Carolina. We're actually one of the latest places we opened
27:36
up was Myrtle Beach.
27:37
And we're all the way to the west in Utah and Salt Lake City and Ogden,
27:42
we're in Albuquerque, and we're in Santa Fe and and Las Cruces and
27:46
all through Texas and all and Tennessee and you know and I Iowa.
27:51
Iowa was an interesting state.
27:52
Can I can I tell you about that for a second?
27:54
So Iowa w we just opened up there recently,
27:54
Yeah, absolutely.
27:59
and this is just like two years ago,
28:01
because this Department of Justice under pr President Biden.
28:06
was looking at the Iowa institution and they said that that it was terrible
28:11
and they they wanted to close it down.
28:13
And I was reading about their lawsuit online in the middle of the night because
28:17
I read these things. And it turned out that they had that they had
28:21
a direct care people who came up with this idea that it that
28:25
if you overhydrate people, they won't get the flu.
28:29
So they kept on giving these people that lived in this institution gallons of water.
28:33
And then they were, they went to the hospital.
28:36
So when the Department of Justice went in,
28:37
they said, You have to do, you know,
28:38
you have to reform this institution.
28:40
So at the time, Governor Reynolds was the governor of she still is
28:44
the governor of Iowa. She's not going to run anymore.
28:46
And I said to her, I said, Look,
28:48
you got to close this place down.
28:49
And her staff said, okay, and they they did.
28:51
They said, we're going to get everybody out of this institution.
28:53
And that was another like wild experience that I saw where
28:57
People, then this is like a ye two three years ago.
29:01
So let's go. This is two thousand let's say not 2023,
29:05
let's say 2000. The year 2000,
29:06
huh.
29:07
there's a dietitian sitting around and she said,
29:10
you know, I'm a little concerned about the the folks living in this building.
29:16
There's 25 men living in this building,
29:19
and one almost choked on a peanut butter sandwich,
29:22
and then a week later a guy almost choked on a hot dog.
29:26
And they could get in they could get sick.
29:28
Now all the other men never did.
29:30
They were all eating normal food.
29:31
So she in her infinite wisdom decreed that everyone in that building from
29:32
Mm-hmm.
29:38
that day forward would have to eat nothing but pureed food.
29:43
Knew you were gonna say that. my gosh.
29:46
So all of the p men lived in that facility and we took them out like three years
29:51
ago. They had never had a cheeseburger.
29:54
They had never had, you know, a piece of chicken.
29:56
They never had, you know, anything they never had you know,
30:00
anything that was a solid food.
30:01
And it was very difficult because th our dietitian people had to work with them
30:06
to try to get them where they could,
30:09
you know, swallow food. They were thick.
30:11
Yeah.
30:11
And they they it's just never gonna die.
30:13
You wanna
30:14
And it was all sanctioned by an independent team,
30:18
you know, a dietitian and a therapist and a speech therapist
30:22
and a physical therapist and blah blah blah,
30:24
and sanctioned by some doctor.
30:26
And they just all said, Yeah, this is okay to do.
30:28
And again, it was it's not considered abuse,
30:31
it's not considered neglect because it was sanctioned by therapists.
30:34
But really, I mean, this is this is criminal and it was allowed to happen.
30:39
And I'm glad that it was called the Glenwood Center.
30:42
And I'm glad in in Council Bluffs,
30:44
Iowa, and I'm glad to see that it was closed down.
30:47
And I'm glad that I could literally go and sit down with one of these guys
30:51
and watch them, as funny as this might sound,
30:53
eat an entire ear of corn. And the corn,
30:56
by the way, in Iowa is very good.
30:57
And eat this ear of corn and like be able to chew it and swallow it.
31:01
It's just amazing. and and th those it's the little things in life that give
31:05
us the greatest pleasures.
31:06
Yeah, absolutely. Absolutely. So so you made an impact across the country.
31:10
And I I I think it's absolutely phenomenal,
31:12
you know, what you're doing. I mean,
31:14
it's it's you know, one of one of the big things for me is,
31:18
you know, the human side of things.
31:20
I I feel like we lose so much of that,
31:22
you know, with our capitalism and and everything else.
31:24
So I'm really excited for for the work that you're doing.
31:28
I'm curious, you know, you you've told me about,
31:31
you know, the number of you've got over 700 homes,
31:33
you're in, you know, 21 states.
31:35
What are what are some stats about the people that are in the program?
31:40
well, the first of all, you know,
31:42
what I've learned is there's a direct res there's a direct relationship between
31:45
the severity of your disability and your level of loneliness.
31:47
Okay. Loneliness.
31:48
Mm. And your level of loneliness.
31:51
There's a relationship between the severity of your disability and your level
31:52
wow. Yeah.
31:56
of loneliness. That's the first thing.
31:59
The other thing that I keep on telling parents,
32:01
and this is important, is you will outlive your children,
32:04
most of you, by at least 35 years.
32:06
And you better figure out what to do now.
32:06
Yeah.
32:07
But the other thing I've learned is that just as you and I have so many friends
32:12
and family, we Our life is better because of other people.
32:17
We live a better life because everyone can can help each other,
32:17
Yeah.
32:21
whether they're whether they're going to talk to each other about
32:23
the thunder they just heard, or or whether they're going to they're going
32:27
to talk to each other about something wonderful going on in their lives
32:29
or something terrible in their lives.
32:31
And that, you know, we need to to to do that.
32:34
We have a lot of statistics on employment.
32:37
We get a lot of people with disabilities jobs.
32:39
So, you know, we all work for money.
32:41
There's no two ways about that.
32:42
But we also work for relationships.
32:43
And When we can get people with disabilities to work with other people
32:44
Yes.
32:47
and talk to other people and who are who are their peers,
32:51
who are not people with disabilities,
32:53
just people in the community in jobs,
32:55
that really increases their quality of life.
32:58
and it increases their longevity.
33:01
We have so many people that have lived a much longer life,
33:04
I believe, and I can't prove this,
33:06
can only do it anecdotally right now,
33:08
who live a better life relative to to a longer life because they've
33:12
had more people involved in what they do.
33:14
They don't they don't have as much effect of of of being,
33:18
you know, alone or isolated. So that I think that they they they live they live
33:22
a much better life.
33:24
Mm-hmm. You know, we we've talked about people with disabilities in a
33:28
on a grand scale, right? And I and I th I think one of the things that happens
33:33
sometimes is is we have a stigma,
33:35
we have a certain belief about you know what that looks like.
33:38
Can you do me a favor and just kind of break some of those stigmas,
33:41
break you know, help help us think differently about people with disabilities?
33:46
I mean there there first of all,
33:48
there's not a person that's listening to this or watching this this this this show
33:54
who hasn't had a person that they know either from a family member or a friend
34:00
of a family or a neighbor or a neighbor's friend or someone from school
34:04
or work that doesn't have a person that doesn't know a person with a disability.
34:08
So everybody's life is affected by disabilities.
34:11
It's it's it's a fact.
34:13
And th there there's an estimate of three to four percent of
34:16
of the entire population of the of ev of the world has developmental disability.
34:21
And you can develop you can break it up into so many different ways.
34:23
For example, people with intellectual disabilities,
34:26
you know, they're they're they might not be able to to to to do math as fast
34:31
as you or I, or they may not be able to have other issues,
34:34
but they certainly have other kinds of things that they can benefit from
34:37
and help people with. a and and I I'll tell you a quick story.
34:41
You know
34:43
One of the people that I work with,
34:44
he has Down syndrome. And, you know,
34:46
it's a there he's a happy guy,
34:48
and his family's wealthy. So he was able to sit in a box,
34:53
fancy box, watching the the Washington football team play.
34:57
And the people in the box were very prominently wealthy people.
35:01
And he turned turned around in this giant stadium,
35:04
and this is how people with disabilities can bring you a gift.
35:07
He turned around this giant stadium in the same box and he turned and
35:10
he looked at this guy and he said,
35:11
Well, how how are you, Magic Johnson?
35:14
My name is Jonathan. And Magic Johnson said,
35:17
Well, it's nice to meet you, Jonathan.
35:18
How are you? He goes, I'm fine.
35:20
Magic, how are your AIDS?
35:23
Do they hurt much? And he said,
35:25
No, I'm doing fine. Now, he asked a question that everyone in that stadium probably
35:30
wanted to know, but of course they thought that it was politically incorrect
35:33
to bring up. But he he was totally,
35:36
absolutely unvarnished question that had nothing to do with,
35:39
he was genuinely concerned about Magic Johnson's health.
35:41
And these are little things that people with disabilities can bring with them
35:42
Mm-hmm.
35:46
to that that we don't really think about.
35:48
And if you look at I mean, look at
35:48
Yeah.
35:50
Look at somebody like Helen Keller and what she did to t look at Stevie Wonder.
35:55
There's this guy, the music that this man brought the world every day.
35:56
Yeah.
35:59
I mean, it it just is amazing how many people with disabilities actually enrich
36:00
Mm-hmm.
36:05
the lives of so many other people.
36:07
Mm-hmm. I love that. They enrich the lives of so many other people.
36:10
That's that's that's beautiful.
36:11
I've I've seen that. I've experienced that.
36:13
and and I I'm absolutely glad that you brought that up.
36:16
let's let's switch gears real quick.
36:18
Let's talk about your book. What's what's tell us about your book first
36:21
and foremost.
36:22
Yes, Silent No Longer is the name of the book.
36:25
And it's available in any on any line from Amazon to Barnes and Noble
36:29
to whatever you want. it's published by Simon and Schuster.
36:32
And the purpose of the book is to talk about people with disabilities
36:35
who have been marginalized, much the same as I told you,
36:38
only with a lot more more more concrete stories that are actually a
36:43
lot more heavy than the ones that I've talked about,
36:46
even worse than being given, you know,
36:48
a pure diet all of their lives.
36:50
And I cover not only that, but the plight of how people with disabilities have been,
36:54
you know, really pert. You know,
36:56
when Aristotle, who the started saying the deaf were not educable,
37:01
he kind of set a bad tone, if you will,
37:05
there and said, Wow, if he said that,
37:07
you know, that must be must be true.
37:09
And then I I explore ideas like when Nazi Germany,
37:09
huh.
37:12
and then you know, back to New Jersey,
37:14
Woodrow Wilson, he was the
37:16
Before he was the president of the United States,
37:18
and before he was the the president,
37:21
and in between being the president of the Princeton University,
37:24
he was the governor of the state of New Jersey.
37:27
He was the first governor in the country to sign a mandatory eugenics sterilization
37:33
law for every woman that had a disability.
37:36
So any woman that had a disability,
37:37
my goodness.
37:39
they had to be mandatorily sterilized.
37:41
And he signed that law. He was the first one.
37:44
And and it
37:45
caught on to a lot of other states as well.
37:47
So I talk a little bit about that and how,
37:49
you know, ridiculous that was and how erroneous because you know,
37:52
you don't, you know, that doesn't have anything to do with who what kind
37:55
of offspring offspring you're going to produce.
37:57
So I I talk about all those issues.
38:00
I talk about the issues about sub minimum wage and about how in in a
38:04
lot of states they'll say, well,
38:05
you could produce so much. So because you have a disability,
38:09
you will only be paid, you know,
38:09
Mm-hmm.
38:11
five cents an hour based on your level of productivity.
38:14
And let's be honest here. If we paid people based on their pr level of productivity,
38:17
there'd be a lot of people in Washington,
38:19
DC, making twenty five cents a week,
38:19
No kidding, no kidding, no kidding.
38:20
right?
38:21
so that's that's still that's still legal in this state.
38:24
I mean in this country right now,
38:25
in most states. as a matter of fact,
38:26
I gave a a presentation in New York and some guy said,
38:29
not in New York. No, that doesn't I said,
38:31
No, it happens in New York, you know,
38:33
and it's the same place just as everywhere else.
38:35
So th that that's a a horrible kind of situation,
38:38
but it's it's true. And I also talk about the fact that people
38:42
w with disabilities are unable to to be looked at.
38:46
the same way as everyone else in the rubs of of of of of them being marginalized
38:50
and how we have to kind of work on,
38:52
you know, changing perceptions and laws and and a lot of other things that
38:57
are going on that could that could be beneficial to to them.
39:01
Wow, wow. And you said we can get this at Amazon,
39:04
Barnes Noble, et cetera, et cetera.
39:05
Yep, it's on it's in bookstores.
39:07
It's all over the place. You can order it anywhere you want.
39:09
And it's it's I I of course I'm gonna be biased,
39:12
but I cover a lot of the people that we supported.
39:14
it's got a lot of, you know, I've met with several governors,
39:17
I've met with a lot of people.
39:18
the forward is by Araldo Rivera,
39:20
who i you know, who was who's been very helpful.
39:23
He helped close the Willowbrook institution.
39:26
and he's been very supportive of us.
39:28
And it's got a lot of other endorsements by some pretty prominent authors as well.
39:32
Amazing, amazing. What do you want someone to do as a result of reading the book?
39:38
well well, I give a a manifesto at the end and I I paint several things that they
39:43
should do relative to voting, relative to you you you can't anybody
39:49
who criticizes what's going on in this country and doesn't vote should be quiet.
39:53
They have no right. They if you don't vote,
39:53
Mm-hmm.
39:55
you don't you don't that that's a that's wrong.
39:58
You should vote. Vote for whatever you believe in.
39:59
They should also work to educate themselves with what on the issues before they make
40:04
a decision
40:05
Who they're gonna vote for. They shouldn't base their vote on other ones they should
40:09
base it on whether the beliefs match their beliefs from an ethical perspective,
40:12
Yeah.
40:13
They should start looking at people with disabilities.
40:15
I'm tired of special, special education,
40:18
special school, special, special this.
40:20
We t taking the special bus. You know,
40:23
treat people with disabilities don't want to be called special.
40:25
They want to be regular, just like everybody else.
40:28
And honestly, the c the title of the book is what I want people to be.
40:28
Yeah.
40:33
Silent no longer. That they need to start speaking up for people with disabilities.
40:38
They have the rights, They should have the same rights as everybody else.
40:42
They are born in this country,
40:43
they're citizens of this country,
40:45
and They should be afforded the same opportunities as everybody else
40:47
in this country.
40:49
absolutely. Absolutely. Absolutely.
40:50
Fantastic. If someone wants to learn more about your work,
40:54
you know, perhaps, you know, they want to,
40:55
you know, be a board member or,
40:57
you know, whatever that is. They see a problem,
40:59
you know, that needs to be addressed.
41:01
I mean, what's what's the best way?
41:02
What's the best way to to connect with your organization?
41:05
Well, you can definitely we we have a giant website,
41:08
Community Options Inc. and and and on there,
41:11
I am very accessible. I have an email,
41:14
Robert Stack at C O O P dot org.
41:17
It's on there. They can write me directly.
41:19
They can write to their local execs.
41:21
if if it's a person living in,
41:23
say, Lubbock, Texas, and they want services for their son in Lubbock,
41:26
Texas, they can look at the executive director there and contact them.
41:29
If it's in Manhattan, they can do it there.
41:31
If it's in Harrisburg, it's there.
41:32
Where wherever they want to want to get services,
41:34
we'll provide them. And if they need any information or they need
41:37
any expertise on anything at all,
41:38
we're available to help them with that as well.
41:40
Wonderful. Hey, thank you so much for taking us on your entrepreneurial journey.
41:44
I I thought that that was amazing.
41:46
That's not a conversation, you know,
41:47
from a nonprofit perspective that we have,
41:49
you know, all the time, but also,
41:51
you know, just just sharing your passion.
41:53
I mean, this was this this was so educational for me.
41:56
You know, it's like you know, a lot of a lot of heart moments for me.
41:59
So thank you for that as well.
42:01
Thank you. I really appreciate your stewardship and and your support.
42:05
God bless.
42:06
My pleasure,
42:07
my pleasure. And folks, we'll have all those links on the show notes.
42:10
So if you check it out on YouTube or wherever you go,
42:12
you'll be able to go to his website or get the book.
42:15
And we will catch you next time on the next episode of the Relentless Pursuit
42:19
of Winning Podcast. We'll catch you there.