The new president of the Arc of Texas, the state’s oldest and largest nonprofit dedicated to people with disabilities, speaks from experience: He’s the father of two autistic and profoundly disabled identical twin 10-year-old girls. But Clay Boatright, who is a vice president with the Dean Foods Company in Dallas, is not your traditional disability rights advocate. He believes the disability community’s rallying cry to close the state-supported living centers has become trite and ineffective and says he wants to upgrade the movement’s messaging — employing everything from the iPad to the Bible.
Boatright was interviewed by the Tribune last week. An edited transcript and full audio follows.
TT: The disability community has pushed loud and hard to close Texas’ state-supported living centers over the last several sessions — but, instead, the state has pumped money into improving them. Has this messaging worked, or does it need a shake-up?
Boatright: I think the problem with the messaging is it's the exact same message we've been delivering for the last 10 to 15 years. When you look at the key points that every parent and every advocate bring up, it's always: “Texas is among the bottom five states in the country for supporting people with lifelong developmental disabilities. We have 130,000 people sitting on waiting lists. Waiting lists are eight years long. We're too reliant on our state-supported living centers.” Every one of us has given that speech 40 times. We give it in our sleep. I've started to wonder, after this number of years, is anybody listening anymore? I mean, I'm engaged in the system. I actually have a vested interest in it, and I'm not even listening to myself anymore. So I think about the audience we're addressing being the state agencies and the legislators and the general public, and I'm wondering, is it really gaining any traction? My hypothesis: probably not. In which case, let's think of a new approach and a new way to do it.
Audio: Clay Boatright
TT: What is the proper message, then? And how do you make it sexier than it has been in the past?
CB: I think we need to get past the fact that, right now, the whole system is designed around delivering some sort of service. We try and figure out, “How do I manage this individual — not so much to enrich their life but more to get through the day.” It's a huge system to get your arms around. So you just wind up looking at, “Am I providing a service and a home, and how many beds are in the home the person is living in, and is that the right number?” Well, who cares how many beds there are in a particular home? It's a strange way to think about whether you’re enriching someone's life. We spend a lot of time worried about, “Are they at a state-supported living center, or are they not?” We shouldn't care what somebody's ZIP code is, but that's the kind of stuff we end up focusing on. I think we need to back up and look at the end result and say: “What is it we're really trying to shoot for? What are we trying to accomplish?”
TT: So is the message, at least from the Arc, no longer about closing the state-supported living centers and more about making sure people have the best possible care wherever they are?
CB: Let's talk about the state schools for a moment. There are a group of people — and I'm the president of an organization which is pretty well-known for not being in favor of the state schools — who spend a lot of breath saying, “Let's close the state schools.” There are equally passionate groups of people, particularly those who have loved ones in our state-supported living centers, who are quite passionate about keeping them open. The issue is not the good or bad of the state school. The issue is, are the people living there having the best life possible, and were they able to choose across a variety of options?
A couple months ago, I had a conversation with a mother who, [with] her husband, moved her teenage son into one of our state-supported living centers. She and I did something that is almost unheard of in the advocacy world between someone who is ... not a fan of the state schools and a parent who is utilizing our state schools: We had a very intelligent, positive, uplifting conversation. And through the course of that conversation, I was able to understand what issues she was facing. I could relate to those [issues] because my wife and I have faced almost those exact same identical issues with our own children. What had become clear to me at the end of the conversation was, [moving] their son to a state-supported living center was the only option presented to them. Waiting seven or eight years for someone to come to their home to help them was not a viable option for their family. Had I been in their exact same circumstances, I don't know if I would have done anything different.
I'm not going to criticize her for making that decision. What I am going to do is urge us as a system to figure out how we make a variety of options available to people so they can make the right choice for their family.
TT: This to me sounds like going back to the waiting list discussion: How do we find more resources to get people in-home care faster? But that’s not what you’re saying.
CB: What I’m saying is, we need to completely re-evaluate how we look at trying to serve the needs of people with disabilities. I'm going to give an analogy. I would love to own a BMW 7 Series. I think that is a cool ride. The way we look at disabilities right now, using that analogy, is we say, “I want a BMW 7 Series, but right now I'm driving a five-year-old Mustang. So to get that 7 Series, I'm going to take my Mustang and I'm going to paint it. And three years from now, if the paint is chipped, I'm going to paint it again.” We act like if we keep painting the Mustang, it's going to become a BMW. That's not realistic. We need to quit looking what add-ons and adjustments we make to the current system to try and get where we want to go.
I'm an evangelical Christian, which means when I am in search of a solution to a problem, I'm going to go to the Bible, knowing that it is absolutely true, and say, “All right, what guidance can I get?” The Bible has a whole bunch of references and a whole bunch of thoughts and suggestions on how we look at people with disabilities. The first one comes out of Psalms. Psalms 82:3-4 says we need to defend the cause of the weak and the fatherless. To maintain the rights of the poor and the oppressed. To rescue the weak and the needy from the hand of the wicked. The Bible can be kind of complicated at times, but that one's pretty easy. The next question is, how do you do it? One of my favorite verses is 1 Peter 4:10, which says, “Each one should use whatever gift he has received to serve others, faithfully administering God's grace in its various forms.”
My favorite phrase in that is the very opening: “Each one.” “Each one” is code. You know what it's code for? For everybody. Everybody needs to be engaged and using their gifts. When you look at how people with disabilities are served right now, and I'm making this number up, I'm going to guess it's well north of 75 percent of the practical support comes from the state or federal government. That's why our Medicaid budget is so incredibly huge. Now, some people would say, particularly here in Texas, that the reason is we have a lot people who are into social justice and are trying to create a large government to try and take care of everybody. That's not the case. The reason so much is coming out of the government is because nobody else is stepping up to the plate. That Bible reference that referred to “every one”? It didn't mean only the government. Each one of us needs to be involved.
TT: So if it’s not just the government, who is it?
CB: I've developed what I call the three-legged stool for support for people with disabilities.
The first leg is going to be an element of the government. The government does things really well in many ways, primarily is providing infrastructure. When we need to protect someone's civil rights or their physical well-being, that's what our government does really well. So that's their function: to provide the infrastructure and protection.
The next leg of the stool is the business community. The business community is great because of its ingenuity, its creativity, its ability to bring in capital. I genuinely believe that in the next five years, the single most important success or improvement in the lives of people with disabilities is going to come from a publicly traded corporation. You know who it is? Apple. When you look at the iPad right now — and I own no stock in Apple, so I get nothing out of this gig — we're seeing unbelievable successes in people who cannot communicate orally in any way. They’re taking an iPad and some of the apps that are being developed for it and are learning how to communicate in an electronic fashion in a way that nobody would have imagined before. Ten years ago, 25 years ago, we looked at people who couldn't communicate in a conventional fashion, and we said: “You know what? They can't speak. They can't communicate. We're going to have to communicate for them.” We treated them almost like pets. That's an extreme statement, but that's kind of how it was. My oldest daughter is 13 years old. She's a conventionally developing child. My daughter doesn't talk to anybody. You know how she communicates? Text-messaging. She uses her iPhone to communicate with everybody. If her younger sisters who cannot speak verbally are learning how to communicate electronically, we now have two peers who are using the same type of device, the same type of platform to share thoughts and ideas. Isn't that what communication really is? So I think that technology, inspired by the business community, is going to give us huge inroads.
The third leg is an area that has been embarrassingly quiet in this world: the faith-based community. The faith-based community is very good at mobilizing people, selling a message, getting people energized. How do we get the faith-based community, the business community, and the government all together to create a totally new business model to support people with disabilities? When I think about my twins, who, as you know, have very severe disabilities, [the question] should not be how many beds are in the house that I want them to live in. The question should be unique to their needs. How can I first identify the environment for them to live in, and then, through a host of technology and funding streams that may be available and volunteers who may be at play, help them maintain a quality of life that is defined by them and not defined by the available service?
TT: You're a businessman, you're a father, you're also deeply religious. When you bring the Bible into your message, how does it sit with the Arc? How do you feel that it sits with the rest of the disability community?
CB: I'm not trying to turn the Arc into a Christian organization. The Arc is a secular organization that happens at this moment to have a board president who's a man of faith. There are a lot of other faith-based people who work for the Arc and who are on the board. You know what? I think that's fine. There's nothing wrong with that. I've never received any pushback on it. What I was describing a moment ago, which for me traces back to a Bible-based orientation, is respecting the individual. It's providing options for people. It's trying to enrich the life of someone who, when God designed them, maybe didn't give them the full set of skills. This is God's choice, and that's okay. That's what the Arc does: We try to give options to people. We try to give a better quality of life.
TT: I'm curious what you feel like you are hearing regarding the disability community from either of the gubernatorial candidates on the campaign trail. Has there been radio silence on this issue, and if so, are there particular questions you feel like you want answered?
CB: I have heard nothing. I follow politics like most people follow baseball and football. I kind of keep a scorecard. I look and see people's points of view on different things. The scorecard on this one is pretty quiet from the two gubernatorial candidates. The question I would like to ask them would be this: Texas is a good place to live. We have good weather. Our cost of living is relatively low. I understand we're open for business. We have good infrastructure. We have a lot of good companies that are based here. It's a lot of good stuff. For people like you and me, Texas is not a bad place to live. With that understanding, and with the understanding that you have of our disability support system — and I'm going to assume that they understand our disability support system and the fact that we have recently been sued by the Department of Justice — if you had a severe intellectual disability, would you want to live in Texas? Why or why not? That would be a fascinating answer.