The signs that something was not right at the Hissom Memorial Center came pretty quickly for MaryAnn Duncan.
She had tried her best to keep from sending the two foster children she cared for to the institution — even adopting one of them — but personal hardships and their disabilities left her with no other option but to turn to the state for help.
Hissom, a state-run institution built in 1963 for individuals with developmental disabilities in Sand Springs, was the only option for Duncan and hundreds of others in the Tulsa area.
“Help was nonexistent,” she said. “The state said there would never be any community services for people like this. ‘They have to live in an institution. … They’re too much trouble for a family. It’s damaging to the other children.’”
After an initial three-week period, the kids were allowed to spend weekends at home with Duncan. On one visit, Deminkyn Martin — Duncan calls him Minky — had on clothes that were so big, his pants were being held up with a rope. He had an unexplained broken tooth and cradle cap — a fungal infection of the scalp.
“I was like, what the hell?” Duncan said.
When it was time to go back, Minky kicked the windows out of the car, and Bridget Becker, her adopted daughter, tried to grab the wheel and turn the car around.
Thirty years ago a group of family members and caregivers, including Duncan, filed a lawsuit on behalf of six children in the institution, which eventually forced Hissom to shut down.
Now the state has a community-based system of caring for children with disabilities that officials say is one of the top in the country — when parents can access it.
One winter day in 1980, Duncan received a call from Hissom saying that a child was really sick and was in the hospital. Duncan had been put down as an emergency contact.
“We found out that when kids got sick, they (Hissom) had a personal ambulance so they would rush them to the hospital and run so that if they died it wouldn’t show up on their stats,” she said. “He had a burn down the side of his face and shoulder. Turned out he was lying in his own vomit for some days.”
That’s when Duncan and a group of parents realized it was time to do something.
The parents started meeting at Duncan’s house every Wednesday night and adopted the name Homeward Bound.
“This little group of parents, I don’t think we could have done it with one less person. Everyone brought their own talents and energy, and we all just found our niche in what we would do,” said Judy Berry, a member of the group.
Her son Doug was nonverbal, but he could sign. However, at Hissom he was discouraged from signing, which added to his depression and frustrations, Berry said.
“It was terrible when we couldn’t meet our kids’ needs, and it was terrible layered upon terrible when we saw all the other people at Hissom that needed so much and in many cases didn’t have the family support that our kids had,” Berry said.
Members of Homeward Bound began to gather information and look around the country at what was happening in other states.
There had already been lawsuits in Pennsylvania, New York and Nebraska, and the group looked especially to Nebraska for guidance, as it had already begun the move to community-based services.
“We had been told that wasn’t possible. We went to see it for ourselves, and sure enough it was real,” Duncan said. “It was emotionally traumatizing driving back. We cried the whole way home because we couldn’t get our kids out and didn’t know what we were going to do.”
About that time, Duncan’s legwork paid off.
She was contacted by the Public Interest Law Center of Philadelphia, which was interested in representing the group in a lawsuit against the state.
The law center partnered with local attorney Louis Bullock and on May 2, 1985, a lawsuit was filed alleging negligence and abuse, injury, unnecessary physical and chemical restraint, and lack of adequate medical care, clothing, food and rehabilitative services.
Before the suit, Bullock had just a small bit of familiarity with Hissom, which was by reputation, a “flagship institution.”
“Once we got into the case, I was really shocked by the reality behind that reputation,” Bullock said.
“We didn’t ask them to close the place. We asked them to fix it so our kids weren’t being tortured,” Duncan said.
The people of Homeward Bound and the ensuing lawsuit were not embraced by all those with family members and loved ones at the institution.
At least 30 families joined in opposition to the suit.
“They were afraid, and I totally get that,” Berry said. “There was one man in his late 70s who had a son in his 40s who cried and said, ‘I can’t take care of him. I’m scared.’ I totally got that.”
She said that even the news media were critical of the group at times.
“You could go and pick up your cleaning and have somebody say, ‘I’ve been reading about this in the paper. What do you think you’re doing?’” she said. “The number of people who thought we were wrong, if not crazy, that was pretty rough.
“How’d we keep at it? We loved our kids and helped each other and had some quality help with our attorneys and other supports.”
Not even Bullock, the group’s attorney, was convinced that closing the institution was necessary at first.
“I struggled in the early part of the case with that a great deal,” he said. “But as we worked with the individuals, I came to understand that that was absolutely true.”
The verdict and results
On July 24, 1987, Judge James Ellison found for the plaintiffs and ordered the closure of Hissom. He gave the state four years to transition the residents into community-based care.
“We all just sat there and cried with relief,” Duncan said. “We didn’t ask the court to close Hissom. We asked them to fix it, and the judge did the best he could sending people out there to try and fix it, and they couldn’t. … So he closed it.”
The federal Tenth Circuit Court of Appeals affirmed that decision in 1992.
Bullock said the closure of Hissom was a “remarkable piece of judicial courage.”
“The law and the facts … absolutely required it, but for a judge to take on the responsibility of doing that, I thought that was very courageous,” he said. “As we went through it, he proved to be a truly remarkable and wise man.”
But, as Bullock will say, the ruling was the easy part.
Ellison’s closure of the center forced the state to create a community-based model of service to replace the institutionalized care patients had been receiving. The last resident left the facility in 1994.
“Here, within a few years we had to simultaneously build that program, develop that expertise and take on the responsibility of hundreds of people’s lives. That was a daunting and very sobering task to take on,” Bullock said.
The community-based system is one where people with disabilities live on their own in the community with various levels of assistance and work.
Berry’s son Doug was 19 when he transitioned out of Hissom, and until his death in 2003 at 32, he thrived in his community setting, she said.
Doug would go to her house on weekends for dinner, and they would go on family outings.
“Everything was better. It was so normalizing for us,” Berry said. “It meant we could be a family. … It was the sun coming up. It was just miraculous.”
Community care today
Hissom was the first of the state’s three institutions to close. The second, located in Enid, closed in November of last year. The last one, located in Pauls Valley, has six residents and is expected to close later this year.
In their place are more than 100 community service providers, both nonprofit and for-profit, offering housing and employment programs.
JoAnne Goin, director of Development Disabilities Services for the state of Oklahoma, said the lawsuit paved the way for a system that “is considered to be one of the leading systems in the nation.”
“I’ve worked in seven other states closing facilities, etc., and Oklahoma has, I would say, the very best training for staff to work in community homes,” said Judi Myers CEO of Gatesway, a nonprofit service provider. “Oklahoma didn’t just close the facilities and have the providers play a game that they wanted to play. There was specific training we had to do in the closure that we still have to do now.”
Duncan said the overwhelming majority of patients who were at Hissom have thrived in the community.
“People have lives today,” Duncan said.
Deminkyn Martin has been working at the same job for close to 20 years.
“He makes enough money that he pays his share of the rent and utilities and food,” Duncan said. “He bowls on Mondays. He takes music lessons. He’s learning to swim.”
Her daughter Bridget Becker works at New Leaf making jewelry.
At New Leaf, a nonprofit service provider offering residential and employment services to individuals with disabilities, nearly half of the residential clients are former Hissom residents, said Jordan Didier, agency spokeswoman.
“From the lawsuit we’ve learned a lot of things that prove that individuals with developmental disabilities want the same things that you and I want. They want to work independently, live independently; they want to be able to go to the movies with their friends,” Didier said. “Every single one of them wakes up every day and makes a conscious decision that they will not be what everyone thinks they should be.
“And every day, they prove it by living independently in the community and working to earn a wage just like people without disabilities.”
More than 5,000 people throughout the state are receiving community-based care paid for by state waivers.
However, there are more than 7,000 families on a waiting list to receive the same services.
“The good news is providers have the opportunity to get people off the waiting list if the state provides the money for us to transition them out of the family home into the community,” Myers said.