Lawrence Edward Stang

United Cerebral Palsy’s Larry Stang is reminded of how far his clients have had to come to get invited to the party.

 Larry Stang is the executive director of United Cerebral Palsy of Arkansas.
Larry Stang is the executive director of United Cerebral Palsy of Arkansas.

His voice is soft as footfalls in snow, a mix of Queens brogue and Southern drawl. Along with Larry Stang's goatee and frontier stare, he doesn't exactly look the part of a Molly Maguire for disabled Arkansans, but he's been out front for four decades.

The last 71/2 years he has been the chief of United Cerebral Palsy, the nonprofit whose mission is to advance the independence and productivity of people with disabilities. He has been with the organization for almost 23 years. He'll tell you everything you'd want to know at the Governor's Mansion on Thursday when the nonprofit hosts its third annual fundraiser Once Upon a Time: An Arkansas Fairy Tale, for the tax-deductible contribution of $100.

The nonprofit's big. Its budget is $22 million, up from $14 million when he took over. It employs about 670 -- Stang began with about 450 -- and serves more than 500 clients, up from 380.

Stang has been in the field so long -- in 1975 he was one of the state's first special education supervisors -- he can see the arc of services then and now, from a time when families kept their handicapped children hidden away at home, then to one where they matriculated to institutions meant to improve the community (albeit separately) of handicapped people, to today's model of integration and independence.

"What happened," because of the secreting away, is "they became different and unusual, and so there was a lot of staring and misunderstanding -- people just didn't know how to respond to people with disabilities."

"I'm old enough to remember, in the early '70s, a National Governors Conference. The first agenda item was what are we going to do with human development centers, because they're breaking the bank."

In other words, the question of what will we do with our disabled constituency wasn't a humanitarian question but a budgetary one. There was no funding mechanism, Stang says. (Funny thing was, the cost of services was about $40 a day.) For better or worse, that was the first national attention focused on this group -- and Stang remembers it.

What happened? Federal health care happened. When President Lyndon Johnson signed Medicaid into existence in 1965, the federal government picked up 75 percent of the $40 bill for Arkansas, all but eliminating that particular fight.

"People talk about the Affordable Care Act" as if it's novel, he says. "This is a 50-year battle that we've been fighting. How do we deal with people who need medical care and don't have the resources to get it?"

In 1987, it was Stang who wrote the state's Alternative Community Services (or ACS) waiver for Medicaid. This was the beginning of in-home and local care. Before, people with developmental disabilities who received Medicaid benefits received them at institutions. The waiver allowed those same dollars to go to de-centralized service providers such as Pathfinder Inc., whose hundreds of vans run routes throughout central Arkansas weekday mornings and afternoons.

In the world of disability services, it's easy to work nobly but parochially at the needs of the disabled, says Mike McCreight, head of Pathfinders.

"Larry's always thought about where we are today and where we need to be in the future, as reflected in his work on the waiver, work on the START [Systemic Therapeutic Assessment Resources and Treatment] program, work on support employment."

Not everyone's inclined to expand publicly funded services to the disabled.

On Aug. 28, a group of legislators met inside a room at the Multi-Agency Complex near the state Capitol to discuss expanding the waivers, from 4,000 today to nearly 7,000, approving Medicaid to an additional 2,800 Arkansans with developmental disabilities, a move afforded by the 2010 health care overhaul. Several Republican lawmakers voiced disapproval. State Rep. Nate Bell, R-Mena, said he's concerned about the overall cost of serving more people -- "The federal money that's being spent is not free." -- while state Sen. Jonathan Dismang, R-Searcy, suggested the state delay action until a new governor takes office in January because while "we would like to do something with the 2,800 people who are on the waiting list ... we want to make sure we do it in the Arkansas way that's best for us."

The room was filled with people, many disabled, but legislators ended the meeting without letting them speak.

Stang's worst suspicion is that, in private, many able-bodied Americans would choose not to expend resources because the disabled "are not capable, and therefore they're not going to be contributing members of the community, and therefore we're wasting money."

The way Stang sees it, there are those in the community who are homebound and jobless and those who are employed and independent. One of the latter is Craig Rein­hardt, a technology administrator at UCP and a client.

His parents, Reinhardt said, "treated me very independently, [and] the more independence you have in your younger years will allow more opportunities later in life."

"Doctors,'' says Stang, ''... when they first tell patients that their child has a disability, they give them a list of what that individual can't do. My statement is, no one knows what a human being is truly capable of when they're first born."

UCP clients will rise to the level of expectations, in other words. If they're fully enfranchised, says Charlie Green, director of the Division of Developmental Disabilities Services for the state, they may be treated like business associates. Stang himself "treats folks with developmental disabilities just like he treats everybody -- like they've got something to offer him, and he's got something to offer them."

WHEN PARENTS PASS

Here's something a mother told Stang many years ago. It still haunts him.

"'Larry, I'll tell you a difference between having a child and having a child with a disability. A typical child, you never think about them passing before you. When it's a child with a disability, you almost hope they do because you're so afraid of what will happen to that child when you're gone.'"

As it happens, she did die before her son, Randy. Even with multiple disabilities, he has lived into his 60s. With his sister as a guardian, and the daily support of UCP caregivers, he lives at home -- his own home. "When community-based services work the way they're supposed to work, the workers become almost like extended family."

Stang's remaining parent died this spring at 95. Lester Stang was the kind of dad we see in advertisements on Father's Day. A sport, a good sport, and a tireless provider, he enlisted in the Army not long after the "day of infamy."

Whatever his dreams were, upon mustering out, he found himself slinging Rheingolds and Schaefers at The Den, a Queens Boulevard watering hole frequented intermittently by the New York Knickerbockers. On his feet six days a week, Lester Stang spent his day off throwing the baseball around with his sons Michael, Jerry and Larry. One of his treasured possessions -- now displayed in Larry's home office -- was a ball bat signed by Bobby Thomson of the Giants-win-the-pennant-Giants-win-the-pennant-Giants-win-the-pennant fame.

Flash forward more than 30 years. Larry Stang got Lester, brother Jerry, son Zac and several extended family to meet in Little Rock under the banner Team America and play in the annual Busch Softball Classic at Interstate Park. The team was good, and in one game Lester got a walk-off RBI single that scored Zac Stang from second.

"I had a friend on the other team say, 'Hey, Larry, how old is that old man?' I said, 'He's 72.' He just shook his head and walked off the field. That's probably my greatest [sports] memory."

If Stang's father was a gamer, mom was general manager. One time Lester Stang broke up a fight between hall of fame basketball coach Al McGuire and another man. He did this by slugging the one not a hall of fame coach. That man set about to exact revenge. Rather than wait for it, Rita Stang had the family piled into the family jalopy and headed to Florida with its entire savings -- a couple of hundred dollars -- within the week.

Lester Stang eventually got into the supply side of the booze biz, retiring from Albertson's a vice president in charge of alcohol purchasing and advertising.

Today, when Stang moralizes, there's an old-time paternal quality to the message.

"One of the problems we're having in our society now -- we've got a whole lot of people not proud of who they are, and I'm not just talking about people with disabilities," he says. "And they don't feel like they have anything to lose. We've got to help people be proud of who they are. That's one of the things near and dear to [UCP]. We want that for everybody."

That's Lester's influence.

WE ALL GET ALONG

One of the recent initiatives Stang has been up on a soapbox for is START, a model for getting care to people with developmental disabilities who also exhibit the signs of mental illness or behavioral issues.

"There are individuals within the mental-health community who feel if you have an intellectual disability you're not capable of having a mental illness," says Sara Israel, director of the Developmental Disabilities Provider Association.

Needless to say, neither Israel nor Stang abides that notion.

There are ways to do crisis intervention and de-escalation, and positive behavioral modeling, she says, and she and Stang hope to affect that.

Not long ago Stang formed a new nonprofit, the Developmental Disabilities Cooperative of Arkansas. It began in central Arkansas but has in the last year spread to the corners. Among other things, the cooperative is administering START and training 20 "interns."

"The state of Arkansas doesn't have cross-trained people," Stang complains, and there are examples of states being sued because institutional response to a report of emotional distress is "You don't have the cognitive ability to benefit from cognitive therapy."

Stang approached Charlie Green, who took it to the Department of Human Services at large, which made it a budgetary priority (a priority shared by Gov. Mike Beebe, Stang says).

"If you stop to think about it, people with developmental disabilities probably have more of a reason to battle depression than people without," Stang says.

Meanwhile, "states have been sued over [not having a mental-health response structure] and they now have START models. We're the only state that's creating our START model from a cooperative of providers," he says. "We've taken a proactive approach."

Should the state proceed on spending issues just to avoid lawsuits?

"I'm very conservative when it comes to taxpayer dollars," Green says, "but when you're talking about crisis intervention or prevention, these are people who are going to need services and they're going to demand services of us ... whether it's police officers and ambulances and emergency rooms and the Arkansas State Hospital, or we can do something that's more therapeutic, less costly, and is just better for them."

START is just another marker in a progression toward fuller membership in the wider community.

"Some of our folks have such a difficult time, it's only normal people feel sorry for them," Stang says. "We don't want people to feel sorry for them. They don't want it either.

"We fought so hard for them to get in the community, the next step now is, now that you're part of the community, how do you ... interact with the nondisabled population? How do you get to do the things that you want to do in your life?"

UCP, Stang is fond of saying, began in the mid-1950s in a residential home downtown, procured by five families with children with developmental disabilities, who united to the advantage of all, whether it was spreading the word on new research or services or pooled caregiving.

"We've never forgotten that we started as a family."

High Profile on 09/14/2014

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