← Nonprofit Leadership Podcast
Nonprofit Leadership Podcast
How One Organization is Greatly Improving the Care for Individuals with Disabilities
00:30:54
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- [00:02]
A
This is Dr. Rob Harder with the Nonprofit Leadership podcast, Making youg World Better. What does it take to be an effective nonprofit leader today? What are the biggest challenges? What are the biggest obstacles? How should nonprofits fundraise in an economy that is constantly changing? All these reasons combined led me to start this show. And it's my hope that through this series, people can learn not only what it takes to be an effective nonprofit organization, but to hear from effective leaders who are who are successfully making a positive impact in their communities. We hope you enjoy the show as together we hear how they are making their world better. Hey, everybody. Welcome back to the Nonprofit Leadership Podcast. I'm your host, Rob Harder. So glad you're here. Thanks for tuning in. Well, today we're going to talk all about the care of individuals with intellectual and developmental disabilities. Now, here's my guess. Unless you have someone in your family or a close friend that is an individual with intellectual or developmental disabilities, you probably don't have a real clear idea of what are the options out there for caring for individuals with disabilities. And in fact, my guest today will tell you that there has been a lot more challenges out there than most people realize. So here's a couple examples. On the one hand, the last few years, there's a lot more private equity investors that are really investing in these care facilities, but it's not necessarily with the individuals with disabilities at the center of concern. It's more about how they can turn it around and make money on these facilities often. And then there's state institutions that sadly, over the years, there's a lot of bad examples of how state institutions really provide less than optimal care for their individuals. And obviously some people have had even worse situations where there's actual abuse going on. And he addresses that as well. Now I started asking him, well, what do you do? What are you doing to solve these issues? And so he's been the president and CEO of Community Options, and they are a nonprofit organization that's dedicated to providing healthy and safe and positive places for the care of individuals with disabilities. And he's also one of these as a big proponent of inclusive employment and trying to create great opportunities for those with disabilities to have access to real, meaningful jobs in their community. So he's been a big proponent of that equal employment opportunity for those with disabilities. It's a really interesting conversation. So if you've never heard about kind of the state of where we are as a country, and now each state is a bit different, but as a whole, he says there's a lot of room for us to grow and improve when it comes to, number one, the care for individuals with disabilities, but also the opportunity to give meaningful employment to those with disabilities. My guest today, Robert Stack, as I mentioned before, he's the CEO and president of Community Options. I'll have some links in the show notes. You can learn a little bit more about what he does, how his organization is growing. And he also wrote a book called Silent no Longer. And what's been interesting, I was talking to Robert before the show and he talked about how there's a couple universities in the country now that are starting to use his book as a kind of a primer if you well, for students that are looking to go in the field of caring for individuals with disabilities. So a lot of interesting things and it'll be very eye opening, I think, once you listen to a little bit more of what he has to say, some of his experience and some of his research about what is the state of in our country, how we're caring for those with disabilities. Well, as always, thanks for tuning in. Now onto the show. This podcast is sponsored by Donorbox, helping you help others with the best donation forms in the business. Well, welcome back everybody to the show. I've got a great guest today, Robert Stack from Community Options. He's the president and CEO. Robert, first of all, thanks for joining us on the show today.
- [03:49]
B
Thank you very much, doctor. Greatly appreciate it.
- [03:51]
A
Absolutely. Yeah. Well, always love having social impact leaders that are really making a difference in the more I looked into Community Options. It's impressive all that you're doing through that organization. I always like to start by giving a little bit of background and then we're going to get into some of the meat of the conversation of leadership, how you apply it and some of the other questions I have. But I always like to find out a little bit of the backstory for you and your story. How did you first get into this line of work? What led you specifically to Community Options?
- [04:19]
B
Well, when I was a very young boy, I wanted to be a priest. So I did to at age 13, I was able to join a seminary and I went away to the seminary in Butler, Pennsylvania. And you had Latin six days a week, you had French six days a week, you had math six days a week. You English six days a week. But the priest gave you Wednesday afternoon off and Saturday afternoon off. And you could either do sports, which I was lousy at, or volunteer. So I decided that I wanted to volunteer and I started working with children with severe disabilities and I just Fell in love with the ramifications of what I could do, and it worked out really well.
- [04:57]
A
So you started early on in your career. Sounds like in your life serving.
- [05:01]
B
Yeah.
- [05:01]
A
Fantastic. Wow. Good for you. So you kind of knew early on. Okay, well, I love hearing that, love that story of just wanting to give back early on. And obviously it's carried through to many years later. Okay, so let's dive in now to some of the specifics of what you do with, because you have dedicated your life really to helping individuals with disabilities. And some of the landscape is changing when it comes to nonprofits and just in general, how people are supporting causes that support individuals with disabilities. And so, in fact, recent years, what I'm learning is that many private equity investors have invested quite a bit in the care of individuals with disabilities. So let's talk about that maybe to start off with, because I think some people may not even know that there's that much money being poured into this sector. What specific ways has private equity investment transformed the quality and structure of care for individuals with intellectual and developmental disabilities?
- [05:52]
B
First and foremost, I want to tell you that when I started community options over 30 years ago, I didn't do it for the money. And I didn't do it because I wanted to, you know, do anything other than help people with disabilities. And having come out of this seminary when I. I worked with a little girl and what happened was eventually that. And the girl, she was the victim of a. Of a father who was psychotic and he tried to kill her. And so she had severe brain injury. So, but. And I would go there and I left the seminary and I came back several years later and I noticed the place was closed down. And it was closed down because the management was terrible. Everything was bad with it. Anyway, after I went to college and went to graduate school, I was kind of getting involved and I wanted to find out what happened to that little girl. And I found that she was put in a large institution. Then I found out that a lot of people with severe disabilities have been placed in large state run institutions and they're all over the country. Name a state and I'll tell you how big, how many are there. So what happened was they were living in these institutions and there were a lot of lawsuits and things that I can get in more detail with if you want, but a lot of lawsuits, a lot of things developed because of that. What happened with that was they said you have to put people in a small house or you have to put them more in a community based program. So we're taking people out of all these institutions from wherever they might be and putting two or three people in a house. There would be staff that would work with those people and we would find them jobs or we would get them things that they could do. The houses were small little houses that fit in the community. No one even knew we were there. We had little vans and everyone was fine. We were funded by Medicaid, which is the way that that works. And it seemed to work in a good way. And again, each state is different. So we had all these things going on and I opened up. I started with three little houses in New Jersey and now we have about 750. Now we're almost 800 homes throughout 12 states. So we have a lot of homes with three people living in each home. And we have a lot of staff because again, you have staff that have to be from 3. You have to have shift models. So 7 to 3, 3 to 11, 11 to 7. So you have to have shifts. You have to have 24 care all the time. So we were doing well. And it's not something that you can make money on. And we're a nonprofit. I started this as a nonprofit and there's United Cerebral Palsy as a nonprofit and Easter Se nonprofit, and there's a whole bunch of smaller mom and pop nonprofits. And what happened was if you. What I figured out is by scaling up, we're able to make sure that the money goes to the people that have direct care to pay them a good wage and that we have a little house. And if you scale up, you can do this. If you're smart, you can do it. Well, from a financial perspective, private equity figured this out. So what they decided to do was they came into a lot of other nonprofit entities and they offered them large amounts of money and they said, we'll buy these places. And honestly, if the integrity of the person in my chair is to the point where they just want to do it for the money, they will sell their place. And so what happened? They actually came to me, they slid an envelope across the table and I said, this is New Jersey. We're afraid of envelopes. And I said, let me look. It was a non disclosure. And I said, well, what's this for? And they said, well, we love community options. We want your name on the box, but we don't want you to do anything. We want to name the people that will be in charge of this. We want to basically take you over and we will give you nosebleed money, you know, and I mean, for about 30 seconds I sat there thinking, I never flew private. I wonder what it's like. I never had a giant house in Park City or Palm beach or Palm Springs. And then I thought, well, this is. So I just said, look, I'm not gonna sign anything. I'm not gonna get involved. I'm not gonna let you sacrifice the integrity of everything I've done. I'm not gonna. In order so that you can make a dollar. So what they do is they'll put more people together. They'll go by the spirit of the law, but the letter of the law, they will purposely try to make money. Now, private equity is great if, you know it's a computer company or if it's something that doesn't really involve the lives of individuals. But if it's for people that are living people and they start figuring out ways that they can collapse the staff and then make more money, they'll set up REITs, real estate investment trusts. They'll show deductions and they're billing Medicaid. So they're actually making a tax deduction for their for profit from a state and the feds and they're getting a tax deduction for the loss of the house. They're owning all these houses, they're showing an income and they're trying to cut down the number of staff, trying to pay them the least amount they possibly can, trying to manage as many as they possibly can, and not caring, as long as they can just barely keep their head above water relative to licensure, they're good to go. So it's not about anything with private equity except the Benjamins. That's what they do. And I will not be. I don't have shareholders. I answer to the people up to a nonprofit board, and we really answer to the people with severe disabilities and their families that we support.
- [11:21]
A
Okay, so that's interesting. Yeah, I didn't realize how much they were involved with this space when it comes to private equity. Okay, let's shift a little bit to state government, because a lot like you said, in every state, there's these institutions that are typically run by the state and state laws, there's all kinds of laws that regulate how we care for individuals with disabilities. But at the same time, often states have a lot of money similar to private equity for different reasons, obviously, and maybe different amounts, but there's a lot of money and resources that come from the state to these institutions. How do state level laws and resources impact the everyday experiences though, and opportunities available to people with disabilities and their families. Maybe you can speak to that side of it, because I'm guessing there's still a lot of people that experience more of a state run institution, perhaps.
- [12:07]
B
Well, there's several things. First of all, probably one of the most nefariously big states that have a lot of people with disabilities living in it is Texas. Texas has thousands of people living in a lot of institutions. And the institutions are from El Paso to San Antonio to Dallas to a whole variety of other cities. And they're large institutions. The cost per person in those institutions are anywhere between 450 to $600,000 per year per person. Oh, wow.
- [12:45]
A
Now a lot of money.
- [12:47]
B
Yes. And like they can keep that because they are able to set those rates and the institutional staff work there when people with disabilities are really there. And it's very. And this, we provide the same service in the community for roughly about 70, 60 to 70% less. Wow. But they won't let that happen because the local legislators in those towns that I just mentioned, they look at those big buildings as a way of providing employment for the local community. So now that could be Texas, but you could go to Pennsylvania, which is a blue state, and you have an institution called Ceilings Grove, which is exactly the same model. And there's a big, large group of people that live in this big institution and they're not doing anything about that one either. So that's important. I also want to mention, as you talk about the states, you know, right now there's a huge demagoguery going on about Medicaid. Oh, Medicaid. They're going to cut Medicaid. We're worried about Medicaid. What about Medicaid? Oh my goodness. Medicaid, Medicaid, Medicaid. And that's true. But what people don't realize is that when it comes to people with severe disabilities, Medicaid is matched by a state. So if a state says they're going to provide a service, they bill Medicaid, they establish a rate and the federal government matches that rate. So if they say a service costs $1,000, the federal government will match it for the thousand dollars. Now in states like New York, New Jersey, Pennsylvania, South Carolina, Maryland, the rates are pretty good. However, the services that are provided to the people with disabilities that are in the community based programs are good. Excuse me, but in states like Mississippi and Texas, they're terrible. So anyway, the states like Mississippi, as I said, the rates are so low that there are absolutely no providers. So example, there's no nonprofits, there's no for profits. In states like Texas, there's the private equity, because they can still show a loss, make money off the loss, and they can do it in a way that's efficacious for them from a financial perspective. And I have to tell you, the amount of waiting lists for a parent with a severe disability could be in Texas years. And I'm talking 15 or 20 years. In Pennsylvania, it's 10 years. Every state, it's a very, very, very long, long time. So they can't provide the service, and they're waiting in these lists. So you have parents that are really having a hard time on providing those services. And it's really, really a. And people need to do something about it.
- [15:46]
A
Okay, that's really interesting, by the way, to hear that there's such a long waiting list. And. Okay, another issue that I know you address this, and it's. Sadly, people have had this experience and you hear about it and there's movies made about this, that there's still these tragic stories of abuse with individuals with disabilities. Even with. Despite the increased awareness and regulation. Why do you think there's still these tragic cases that pop up against people with disabilities and they still happen in these care facilities. What are you finding and how are you kind of trying to change that narrative with what you're doing?
- [16:19]
B
It's strange. In a state like Massachusetts, it is legal for them. We took a guy out of Massachusetts. When I met him, he was literally on a table, tied up in restraints. We said we could take care of him. They flew him to Texas and they kicked him off a private plane in handcuffs and leg irons. Now, in this state, in Massachusetts, there's a place that allows you to be tied up, have ammonia squirt in your face or be shocked. They actually have a backpack that you wear, and the backpack has electricity. And every time you do something, they can shock you. Okay. And that's legal because it's considered. They have a team of psychologists that sit around saying, we think that this is in the person's best interest. So they decided that this is allowed. It is not allowed in my book. And we don't do it in any of the states that we're in. And I find that corporal punishment should be banned throughout the country. And we've been fighting that and fighting that. And they still have some ways around it. That's one thing. So people are literally. And that's legal. So they all get around and say, well, yeah, if Johnny does this, we can shock him with a cattle prod. They call it aversion therapy. And it's a long cattle prod with batteries in it. And they shock him just like he was a cow. All right, so that's legal. And that's today. That's this. We're not talking about 1960. We're not talking about medieval times. We're talking about, like, now, right now, 2000, and people that get excited about bullying and this and that. They should really stop and look at this thing, this reality that's happening. Another thing that's legal, okay, if you and I are putting widgets in a box, this is what they'll do. They'll say, okay, put widgets in a box. I put 10 widgets in a box in an hour. So they'll pay me $10 an hour. But if a person with disability does it and he puts one widget in a box in an hour, they'll pay him a dollar an hour. And it's performance based. It's called based on productivity, and it's from a law that was passed in 1939 in this country. So right now. So they base how much they pay you on your level of productivity. So let's scratch our head and ask ourselves, well, gee, do you think that people in Washington would be paid what they're paid if you based it on their level of productivity? So we have situations where you have thousands of people throughout the country making 30 cents a day, 50 cents an hour, a dollar an hour, and they're saying that that is allowed because they can show that it fits a sort of formula that they've been able to allow, and they can do that. So it's called subminimum wage. And again, we don't do that. We find that to be reprehensible, and it's exploitive. You know, and this isn't Gaza. This isn't the Ukraine. This is, you know, Arizona. This is. This is Salt Lake City. This is Manhattan. This is wherever you want it to be. It's in this country right now. We exploit people with disabilities because they can do things. They can stuff plastic bags or they can stuff plastic gloves into boxes and sell them. So it's kind of a pathetic thing, but it's so allowed in this country.
- [19:43]
A
Got it. Oh, that's it. That's so sad. So sad to hear that. We'll be right back. Are you looking for an easy and effective way to boost your nonprofit's donations? Well, look no further than DonorBox, the online fundraising platform that streamlines your fundraising efforts, maximizes donations, and simplifies giving for your supporters. With Donorbox, you can create beautiful donation forms, accept digital wallet payments, track donations, and send auto receipts. And the best part, there are no setup or monthly fees and no long term contracts required. So what are you waiting for? Visit donorbox.org today to get started. That is www.donorbox.org. Okay. And then actually that's something you of course do as well is you really talk about inclusive employment. You stress the need for people with disabilities to have access to real, meaningful jobs in their communities. So what makes things inclusive in your mind? And why is it so vital both for the individual itself and for society?
- [20:48]
B
Well, Rob, we all work for money, that's for sure. But we also work for relationships. And what we know is that there's a direct relationship between the severity of your disability and your level of loneliness. We also know that we work for money, but we also work for relationships so that we can have meaningful interactions with other people. And when people with disabilities can go to a regular job and be with other people who don't have disabilities and they can talk to them, they will thrive and they develop social relationships with them as well. And we all know that longevity is tied to social relationships, the way that we interact with other people and how that whole thing goes about. So what we have to start doing is really getting more people like that. And we have thousands of people that we place in jobs. And the thing that I always tell the employers are, you know, our people don't come to the jobs with drama. They just, they're grateful they have a job and they'll show up for work and they're happy they have a job and they'll come there with, with meaningful and dignity and they'll do whatever they're supposed to do. And if it doesn't work out, we don't know how to spell litigious, we'll walk away and find another job. So we have placed thousands of people and they love feeling good about the fact that they've worked, that they have a job. And it's just, that's really important because it's not only for the money, it's for the social aspect of what they encounter.
- [22:10]
A
Well, I know your organization's been committed to hiring people with disabilities. Is there any lessons or strategies you want to pass on to others that you've really found successful at community options, particularly when it comes to quality care and inclusion? Because there's a lot of systems out there. And I think other organizations, maybe they've tried, but not with as much success. And so why has it worked at Community Options? What are you putting into practice that really separates you out?
- [22:33]
B
It's kind of humorous. I've sat down with clinical people, I've sat down with families, a large group of people, and I said, you know, we have a very, very complex clinical thing, and that makes us successful to help people with disabilities, which is why right now we're serving over 6,000 people with disabilities nationwide, whereas a few years ago it was a couple. What we do is this very, very, very opaque clinical discussion. And I'm being facetious. What we do is we ask them four things. What do you like, what don't you like? What do you want to do and what don't you want to do? And we pretty much developed the entire program for that person on those simple, commonsensical things. And that's how it evolves into what it evolves into. So it's been phenomenal. And parents like it because that's what we all do. You love doing podcasts. That's why you're doing it. You don't like doing certain other things, so you don't do them. That's exactly what people with disabilities. Same exact thing.
- [23:33]
A
Are there some other things you do when it comes to ongoing training, opportunities for growth, and, you know, moving forward? What are some of the things you put into place there that really has helped people continue to improve once they've get into a job?
- [23:43]
B
We are very strong on mentors, and we think that you can identify. There's always somebody out there that can help you do something. And we love to go to mentors, and we love. Everyone can become a mentor, and everyone can help you do what you need to get done in order to succeed in your job. And it might not be your boss, it might be a coworker. It might be just somebody who's just a little bit more savvy than you are or has a higher EQ than we do, and they will help identify those kinds of resources that they need.
- [24:11]
A
Nice. Like that. Okay, well, another thing you've done along the way, if you wrote this book entitled Silent no Longer for those. And we'll make sure that there's a link in the show notes for that so people can check that out. They may want to read. Talk to me about what you wanted readers to take away from that book. If there was like one primary action point that you would urge them to leave reading your book and then go do, what would you say that would be?
- [24:33]
B
I'd like to just kind of preface it with a Little story. There was a. There was a. Geraldo Rivera is a famous journalist. And at one time, a million years, a long time ago, he came on television, showed a bunch of people with disabilities who were being abused and neglected. And. And now what happens right now in this country is when people are mad about something, they. They walk around with signs and they complain. What happened here was when Geraldo did that, there was a guy watching that TV show named John Lennon who was a famous Beatle, which is for those of your younger viewers, he was a kind of a very famous musician who happens to be dead right now. In any event. He decided to have a couple of concerts in New York City, and he did. And he had these two concerts and they raised a bunch of money. They took that money and they put it together into the One to One foundation, and they used it as a way to sue the state of New York. And they sued the state of New York for the fact that they were providing horrible care. There were thousands of people with this, 6,000 people living in the Willowbrook Institution with horrific, horrific care, horrific situation. And so he galvanized that group so that they were action oriented. So my point is to the book. People have to get together and realize that people with disabilities are marginalized, that we should really start treating people with disabilities with dignity, and that we can, as a collective society, realize that this, in this country is not acceptable. And we can, as a group, work together to vote, to deal with our local political leaders, to talk to those who are our school board people, to talk to the people that are employers, to talk to our neighbors, to talk to the people we go to church with, and talk about how the person with a disability that might be in their family or somebody they know has been ostracized, has been exploited, and can live a much better life if they could just kind of look at this situation and realize that things need to be improved.
- [26:36]
A
And do you feel like, you know, not just because of your book, of course, but just all the things you're doing, you're in this space all the time. There is a lot more people that are, I feel like, are trying to do that, are trying to raise the awareness around individuals with disabilities. Do you feel like things are getting better as a whole? And is there a trend line you're seeing that people in our communities are saying we need to do something collectively, or do you feel like it's still an uphill battle? Where would you say the trend line is?
- [26:59]
B
I think that what I'm doing right now is I'M starting to see myself playing a little bit of game of whack a mo and that is that we're closing the institutions. You know, 20 years ago there were over a hundred thousand people in institutions. Now there's about 20,000. We've got them to put moratoriums on a lot of institutions. States like New Mexico, states like Minnesota, states like some of the other states have no one in institutions. But what they're doing is something else. They're literally saying, well, if we can't place them in an institution and their parents can't take care of them, they'll put them in a nursing home. So they're taking 8 year old, 10 year old, 15 year old kids and they're putting them in nursing homes. And the nursing homes are run by private equity or for profit companies and they have their doors wide open and they're saying this is great because instead of having an elderly person who's only going to be here for five years, I've got an individual that's going to be here for 35 or 40 years. And it's a very, very bad way of looking at how people with disabilities should be treated. And so while there's certain things and people now are getting to get more involved and but you still, and you see them more in movies, you see more people with disabilities as a regular entity. But people with disabilities still need to be not put in nursing homes and not exploited. So it's better than it was, but then again it's not as good as it should be.
- [28:27]
A
Some more work to be done. Got it. Well, what would you say then as you look ahead? You've been doing this for a long time. What is most urgently needed to prevent abuse, promote dignity for people with intellectual and developmental disabilities nationwide? What do you feel like needs to happen in our country and I guess around the world for that matter?
- [28:43]
B
Well, I think in this country one of the problems is that there's a part where they overregulate and I spend more time documenting care than providing it. And I think that a lot of people do that as well. And that's kind of weird. I think that this country, they can say we don't think that for profit, private equity is a way that we should buy services from them to serve people with disabilities. There's thousands of other agencies out there that can do it. But I think that in general we just have to raise the awareness of the general public on how they can help that. And I think that by getting them involved in our lives is the way, we're going to make a big difference.
- [29:19]
A
Yeah. Well, again, you've been doing this for a long time. Thank you for your service, you know, to really try to make it better. And obviously you're growing. Community Options continues to expand to different states. So I'm going to encourage my listeners to check out again in the Biowell. I'm going to have a couple of links in the show notes. Again, people can find out more about you, but in general, for those who are just listening, how can they find out more about you or find out more about Community Options? If they're listening in, they can go.
- [29:41]
B
To robertstack1word.org they can go to communityoptions.org, they can just, they can Google robertstack.org and give you everything. Or they can just go to Community Options and they'll tell you all about us.
- [29:53]
A
That's perfect. Well, hey, Robert, thanks for all you're doing. Thanks for taking time out to talk a little bit about what your work is and talk about nonprofit leadership. Really appreciate it.
- [30:02]
B
Thank you very, very much. Appreciate it.
- [30:04]
A
Absolutely. Well, until my listeners, thank you so much again for tuning in. We'll see you next week. Hey, friends. Well, I wanted you to know that this podcast can be found on itunes, Spotify, Amazon, Google podcasts, and wherever you listen to other podcasts. I also want to encourage you to, like, subscribe and share this podcast with others. This will actually help us get this great content out to more nonprofit leaders just like you. You can also join the nonprofit leadership podcast community, find other resources and interviews of past guests, all on my website, nonprofitleadershippodcast.org well, thanks again for listening. And until next time, keep making your world better. This podcast is sponsored by Donorbox Donor Box, helping you help others with the best donation forms in the business.