Recently the Texas Sunset Advisory Commission released a report that was highly critical of the Texas state-supported living centers. The system of institutions has a proven track record of providing substandard care and the report says they cost too much money to maintain.
It’s Sunday afternoon at Clay Boatwright’s home in Plano. He has a 17 year old daughter – she’s in her room - and two twin 14 year old girls – Mia is out by the pool with her mother and Page is upstairs watching a DVD of Frozen. It’s a typical Sunday afternoon – but the twins are not typical. Boatwright explained that they have severe intellectual disabilities and autism.
“A lot of people don’t know what that means – what does severe mean? Even though they are 14 they are non-verbal," Boatwright said. "They still need a lot of help going to the bathroom, bathing, things of that nature. And they are prone to some really – I use the word 'apocalyptic' level meltdowns and you never know when that’s going to occur."
For Clay and his wife Carol, there are lots of surprises caring for the twins. For example, during our interview Mia walked into the living room without wearing clothes.
“Sorry….actually it’s funny that it happened because I was literally about to say if you see somebody naked running through the house don’t worry about it.
“Sorry about that…welcome to my home," Clay said, laughing. "You take your own risks.”
DAVIES: “It’s okay it’s radio.”
Over the years, Boatwright said he has experienced more than his share of autistic naked surprises and household disintegration – one of which lead to a moment of clarity for him.
“Not long after Page and Mia were diagnosed we were having a really rough day here at home," Boatwright said. "It was a Friday night, Page and Mia were having massive meltdowns. My wife was extremely upset. Our oldest daughter was crying because everyone else was upset. And I was actually back in our bedroom and I was trying to lay down and go to sleep but with everyone screaming and upset it was hard to do that. And I’m laying there and I’m thinking… I basically got mad at God. I said, 'God why did you do this to Page and Mia? And just to be blunt, why did you do this to me? And my family?' That’s what I was thinking about when I fell asleep that night. The next morning, Saturday morning I work up and it was like waking up on a mountaintop and like a breath of fresh air – just like totally rejuvenated and the very first thought that entered my head was to help people like Page and Mia which I interpreted as people with severe disabilities and I tell you that story because I have no doubt in my mind that while I was asleep the Holy Spirit literally answered my question. I asked God, why did you do this? The Holy Spirit told me it was to get engaged and start helping people like Page and Mia’s level of development."
Boatwright got involved and eventually joined the board of the Arc of Texas, which advocates for persons with intellectual and developmental disabilities and was appointed by President Barack Obama to The President’s Committee for People with Intellectual Disabilities. During his involvement, Boatwright has gotten to know the complex system of care options available in Texas as well as anyone. And he’s still not clear on what the future holds for Page and Mia when they become adults.
“They’ll probably live in either a community home type scenario or something that we need in Texas options which are – provide more services and the ability to serve people more than you can do in a four person community home but are not so large that they look like a state institution,” Boatwright said.
A state institution means one of the 13 state-supported living centers in Texas. The SSLCs are massive state run facilities that provide 24-7 residential care for those with intellectual and developmental disabilities. Many of the residents also have other medical conditions that require specialized total care. The large scale institution model has fallen out of favor with many but Boatwright said it, as an option, is never far from mind.
“When I think about the state supported living centers – the first thing I think about is the people who live there. And I think about their families 40 years ago who had no other options – they had no choice – there was no IDEA (Individuals with Disabilities Education Act) for the school systems to take children who are developed like my children," Boatwright said. "The only option out there was the state-supported living centers. And when you only have one option open to you, you take it. And I absolutely understand and respect and sympathize with those families 40 years ago because if we were living then with my children then I would absolutely guarantee you my children would be living in a state-supported living center today,” he said.
But the future of the SSLCs is uncertain if not bleak. Recently the Texas Sunset Commission issued a damning report about the centers, calling for six of the centers to be closed. Texas has seen the numbers of residents at the 13 centers decline over the years from more than 13,000 to 3,650 today. But Texas has not closed a center since the 1990’s.
“Sunset took a really hard look at it. They calculated the issue. They found that we really needed to make some bold steps as a state and we agree with them,” said Joe Tate, policy specialist for Community Now, a nonprofit that advocates for the disabled and encourages community living.
Tate said the residents in the centers would be better off living in the community in smaller group homes - it would save the state money -- but more funding is still needed in other areas.
"As the state-supported centers begin to downsize – if we don’t redirect that money into bolstering the community then we are even going to be further behind than we already are in caring for people,” said Tate.
The Sunset Commission also took into account the problems with the substandard quality of care and neglect at the SSLCs.
In 2009 Texas was sued by the Department of Justice for the scandalous conditions at the centers and the state quickly settled agreeing to a baseline standard of care. In the agreement, DOJ inspections would grade the centers and for the next five years – not one living center passed the inspections. No one was found to be in more than 40 percent compliance.
But even with these documented problems and cases of abuse the biggest supporters of the Living Centers are the families who have loved ones living there.
Susan Payne is the president of the Parent’s Association of the Retarded in Texas.
“My sister has lived at a state-supported living center for 42 years," Payne said. "She has lived at Corpus, Ft. Worth and now she lives at Denton. I’ve never seen any abuse. I’ve seen loving care. Our family members firmly believe that the lives of their loved ones depend on these services."
Payne said she’s never seen an instance of abuse at the centers and she is opposed to closing them down. And the way the DOJ grading system works gives the false impression that the conditions are much worse than they actually are.
“As a matter of fact the way that the Department of Justice settlement agreement works is there’s no middle ground," Payne said. "There in each category you are 100 percent in compliance or non-compliant. So there have been great strides in all of the areas for the state supported living centers to become compliant."
Payne said the living centers have been graded too harshly and many of the residents would not be better off if the centers were closed and they were put in community homes.
But Haley Turner, an advocate supervisor for Disability Rights Texas, maintains the living centers are substandard failures – even if the families can’t see that.
“We put a ton of money into these facilities and it appears years later that it may not be fixable that there might be institutional things happening that can never be fixed," Turner said. "No matter how hard people try, no matter how much money people dump into them, they just can’t be fixed."
Turner said Texas could be finally ready to make big changes in the way it treats the intellectually and developmentally disabled persons in the state. But there are still lots of questions about what form those changes will take.
“I think there’s a lot of uncertainty," Turner said. "I think that everyone has read the Sunset report but we don’t know what’s going to happen. You know their recommendations – we don’t know. I think we don’t know what’s going to happen with the DOJ. So you have all these things swirling I don’t think any of us have an answer about what the future looks like."
According to the Sunset Commission: Maintaining this large system of state-run facilities is costly, involving more than 13,900 employees and a budget of $662 million a year. If the Legislature follows the Sunset recommendations Texas could save $98 million by 2020 by closing the six facilities.
But in the end it will be up to the Legislature to make those decisions.
In a statement, state Sen. Carlos Uresti, D-San Antonio said:
"The Sunset staff report recommendation is a step in the right direction, but I believe it is premature to single out any specific location, or number of living centers to close. To do what's best for some of our most vulnerable Texans, the 84th Legislature will have to study this issue with the help of experts and advocates to ensure those Texans are properly cared for, no matter where they reside."