Walt Wingo is a 55-year-old severely retarded man who has lived in state institutions in Texas since he was four years old. He's flown on airplanes, dined at country clubs, seen countless rodeos and circuses, walked on the beach, celebrated holidays with his mother and visited his father in Dallas in the spring one last time before his dad died. His mother describes Walt as "verbal and very alert, like an enthusiastic five-year-old."
Since 1977, he's lived at the Richmond State Supported Living Center in Fort Bend County, where he's surrounded by friends and cushioned by daily activities. The parameters of his world, though, have diminished in recent years, despite the efforts of his very determined 75-year-old mother, Louise Abt Clay. Thanks to what Clay says was a botched spinal surgery in Galveston in 2008, her son became a quadriplegic and began losing his sight. He spent three months in a long-term acute-care hospital in Sugar Land where, his mother says, a doctor asked her if she wanted to turn her son over to hospice care.
She didn't think her son was ready to die and moved him back to Richmond State Hospital. First he stayed in the infirmary, regaining the 40 pounds he'd lost, and eventually moved out to a cottage on the grounds. He is turned every two hours at night to avoid bed sores and so far, she says, there's been no breakdown of his skin. He spends most of his time in a wheelchair. He still paints birdhouses with the help of an aide guiding his hand; he retained minimal movement in one arm.
Used to be, he'd spend alternative weekends with his mother, but that's gone now because of all his added medical needs. He could require emergency attention at any time. He still comes home for a few hours each week and they go on shopping trips three times a week -- he really likes Walmart -- in a special van Clay bought for her son and his specially equipped chair.
The Richmond residential campus is one of 13 state-supported living centers that the Texas Sunset Advisory Commission took a hard look at in a report released this August. The commission, a group of state legislators chaired by Sen. Jane Nelson, recommended closing the state school in Austin by August 31, 2017, and said that five others should be closed by 2022, without saying specifically which ones. That'll be left up to another committee. Although the final decision is left to the Legislature, eviction notices were sent to 77 residents of the Austin center in November, and it plans to close seven cottages. Residents and their families are already receiving counseling on what their next moves could be.
With dwindling enrollments, the state schools house about 3,650 patients, which according to the commission doesn't justify their continued existence. Caring for these patients takes 13,900 employees and a total budget of $661.9 million a year.
Once the decision is made to downsize or close a school, residents will be offered community services or placements at the surviving state institutions, which might or might not be within easy driving distance for frequent visits by families. If the legislature votes to close a state school, there is no appeal.
While proponents of community-based programs have heralded the sunset report as akin to Texas finally moving out of the dark ages, the outcry in Austin from relatives has been deafening. Stephen Wallace and Dr. Forrest Novy have each filed lawsuits against the state to block the forced move of their relatives. People who have written letters or appeared before the commission to argue against this proposal -- one that surfaces every few years -- say it's nothing but greed that's driving the state. They reject the notion that the profoundly disabled will do well living in group homes with no medical personnel on staff and trotted out to day-hab programs to keep them going.
"It has to do with money, and it has to do with people trying to make a profit," Clay says. "If it's done right, the care for these people can never be profitable.
"My son is quadriplegic and blind to boot," says Clay. "There is a huge difference between someone who can hold a simple job in the real world and someone like Walt and many of the other people in the SSLCs. Walt would not benefit in any way to be in a group home. He would miss the daily activities and all the people he knows. We didn't realize he was blind for a while because he recognizes everyone's voice and talks to them."
The Department of Aging and Disability Services is in charge of overseeing long-term care facilities in the state: the residential living centers as well as community programs, home health agencies and nursing homes. And it's doing a lousy job of it, according to the Sunset Advisory Commission.
"DADS takes few enforcement actions even when confronted with serious and repeat offenses," the August report states, while giving the agency a slight pass by noting that state statutes keep penalty caps low and fines disappear if providers correct their violations.
Still, DADS is definitely in deer-in-the-headlights mode since the Sunset Commission questioned its effectiveness and existence. During a talk with its spokeswoman, Melissa Gale, she made it clear that whatever the Legislature wants, that's what DADS really, really wants to do. Supporters of state schools say they feel betrayed and that DADS has just gone belly up, looking out only for itself. That's not entirely fair, since in a just-released draft report, DADS does detail concerns about moving patients far from their families, what medical service will look like outside of a state school and whether community centers can handle the most significantly disabled individuals.
According to the advisory commission, each person in a state school "costs about $113,000 more than serving that person in an equivalent program in the community. Maintaining the centers' dilapidated infrastructure adds even more cost." In 2013, funding for Richmond was more than $53 million for 342 residents and 1,330 employees. Texas, according to the commission, operated more state living institutions than any other state.
As envisioned by the advisory commission, the sale of the Austin center alone "would result in an estimated revenue gain of $25.1 million in 2016" (although others in Austin have challenged that figure as too low). Closing six centers would mean saving state and federal funds that are expected to grow to $97.9 million by 2020. There would be 400 fewer employees. The commission recommends moving some of the money -- to avoid losing federal funds -- to the home- and community-based program.
Incredibly enough, in the very same report, the commission said DADS doesn't know what's going on in these community day-habs. "Despite rising use of these facilities, DADS does not have basic information on how many of its clients attend day habilitation, where the facilities are located or problems at these facilities."
So we're going to send the most vulnerable, most fragile people out to these places? Places where the state itself already admits there's inadequate oversight?
To be sure, Richmond and other historic state schools don't have pristine reputations. A 1974 lawsuit against Austin State School alleging mistreatment resulted in a mass movement of clients to community-based programs. Travis State School and the Fort Worth State School were closed in the mid-1990s, and in 1995 and 1996, a number of allegations, including the use of cattle prods on patients, were made about abuse at the Richmond center, most of the cases being reported from two dorms occupied by residents who were unable to talk. The U.S. Justice Department entered into a settlement with the state in 2009 that resulted in independent monitoring reviews twice a year at all the centers.
More recently, a 28-year-old man died in 2010 at the Richmond state school after suffering blunt force trauma to his abdomen, and two members of the staff were indicted by a grand jury.
"There are going to be bad things happening in any care-giving setting, whether it's children or animals. In a situation like Richmond, it's going to turn up; it's going to be discovered sooner," Clay maintains. "They have cameras out there in the day rooms and outside. A lot of stuff has been caught on cameras."
And there are documented problems at day rehab and community-based programs as well, state center advocates point out. A 38-year-old man attacked and killed a 62-year-old woman -- both of them mentally disabled -- at an adult day-hab in Austin this October. Reportedly, he'd been bounced from one facility to another, his mental illness and aggressive behavior not a good match for a day-hab environment.
An investigative report by KXAN in Austin revealed that DADS staff failed to report more than 1,500 cases of abuse and neglect at elder-care facilities to law enforcement, even though the law requires them to do so within 24 hours.
Texas isn't the only state grappling with this. In April, an independent reviewer in Georgia found that the state wasn't doing an adequate job of monitoring developmentally disabled patients who'd been moved from state hospitals to community-based programs. After two people died, Georgia halted the program until better controls could be put in place.
Relatives of state school residents have trotted out some of their most personal moments to argue against the coming closures. Their stories -- a mixture of sadness, hope and desperation -- are their only weapons, but ones a listener wishes they didn't have to use. Rita Sue Rosenfield is profoundly retarded, has lived at Richmond since 1970 and has just turned 68 years old. She's aged a lot in the past few years, her sister Ileene Robinson says, no longer rides horses at the Richmond center and doesn't want to get in the swimming pool anymore. "When they age, they get problems, get crochety just like all of us. Rita screams and yells. Her food has to be cut up in the size of a sugar cube. You don't get to do stuff like that in a group home," Robinson says.
If Richmond shuts down, Robinson says, she'll try to move her sister to Brenham's state school. "I can't take care of her. Last night she got up at 1 o'clock in the morning, and she didn't go back to sleep. You can't even take a shower. A baby at least you can put in a crib. This is an adult. I'm 70 now, and I can't keep up with her."
"She says, 'Hi, how you doing?' to everybody," Robinson said. "How's she going to do out in the community?"
Judy Straughan is the mother of Lisa Tanner, 43, who lives at the Austin center. She doesn't know what to do if they are forced out. "She has severe cerebral palsy from a birth -injury. She is medically fragile with many issues; she is also on tube feeding. She could not survive in a group home."
Forrest Novy is the brother of Wayne Novy, a 63-year-old with autism, profound deafness, osteoporosis, mental retardation and pica, a disorder that causes him to eat non-edible materials. "There's others like him that the community just isn't prepared for," Novy says. "They don't have the infrastructure."
But legislators want the state to get out of the business of direct care, Novy says. "We need to outsource. It's cheaper," he says, repeating their arguments. "It's cheaper, there's no doubt, but it's also at a great cost."
Novy and several others pointed out there's an unfair comparison going on in the savings discussion. As state Rep. Myra Crownover (Lake Dallas) wrote to Nelson and the sunset advisory group, "At SSLCs there are medical doctors, dentists and physical and occupational therapists on campus." Group homes don't have this. "This results in a 'lower' cost of care in group homes but only if we ignore the fact that the state of Texas is still paying for the care provided for these residents through Medicaid."
Novy says he understands and supports the movement away from institutional care. "People should be able to take advantage of this if they can. But the preference and choices for someone like my brother are very, very different than someone who wants to live in a neighborhood, who wants to be in his own room and close the door." His brother wants to be around other people, to have someone take his hand when he needs to go to the bathroom, he says
"He doesn't talk. He doesn't communicate. If he falls and is hurt, no one would know it other than a bruise on his body.
Any move is going to have consequences, even if it's to another state school, Novy says. Wayne had been living at the Denton school but when their parents died, his brother moved him to Austin, where he lives now. "There was a period of about four months when he was very, very agitated. He did a lot of self-abuse, hitting himself, hitting his head."
Four-year-old little boys don't get sent to places like Richmond anymore. In fact, there's a reluctance to send anyone new there. In all of 2013, there were only 13 new state school admissions. At the same time, there were only 14 community placements. According to the DADS draft report, in fiscal year 2014, the average length of stay at all Texas state schools was 23.8 years with shorter stays for emergency assessments.
Relatives -- most of whom are older or at least middle-aged -- have some tough choices to make. Clay talks about opening up her own group home, not especially realistic at her age, 75. Robinson talks about Brenham, but in the next breath says, "Say you move to Bren-ham and then they're on the chopping block?" Like Forrest Novy, they all know that any move brings pain.
DADS spokeswoman Melissa Gale says that Austin has been downsizing since 2012 because of staffing problems -- apparently there's so much competition there for medical jobs that professionals choose to go elsewhere. She insists that no one will be thrown out even if the state decides to shut down their facility. "If we cannot find the services they need, we will not transition the residents because in the end, their health and safety is what is important."
A review team from DADS will recommend where a patient should move to, and if a guardian disagrees, he'd better act fast. Any appeal in county court, Gales says, "must be filed by the 31st day after the hearing of-ficer's decision; other-wise, the hearing -officer's decision is final."
Clay, for one, doesn't see all the bright promises becoming real. "Putting all the necessary supports in the community for those with intellectual disability is NOT GOING TO HAPPEN, just as it didn't happen for the mentally ill. So jail or death will be the most likely outcome for these people -- which is going back to the 15th century," she wrote Ken Levine, director of the Sunset Advisory Commission in June.
"I have to live forever -- at least as long as Walt does," she says. Yes, there are high--functioning people who can do fine in a group home, she says. Sadly, she doesn't see how her son would be one of them. She really hopes she doesn't have to find out.
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