Lawyers: Thousands of Mentally Disabled Texans Are Wrongly Living in Nursing Homes
Zak Morgan with Barker's son, who is now in his early twenties.
Courtesy of Sharon Barker
Zak Morgan only remembers a couple activities available at the nursing home where he was sent for five years: bingo and bowling—the kind with the fake plastic pins and a kickball. Sometimes he watched TV. Often he stayed in the cafeteria, where he would socialize with just about everybody.
The other residents were all 30 to 60 years older than Morgan, suffering from chronic illness or simply old age, living out their last years in the comfort of dull routine and an attentive nursing staff. Morgan, however, had not even made it over the hill — he was a 38-year-old intellectually disabled man with cerebral palsy, with a radiant smile, always dressed in a polo shirt and suspenders.
He had a high school diploma and a wish to one day work in an office, putting his vocational training to use answering telephones despite his speech impediment. For 17 years he lived in a small group home where he learned those skills, and lived with five other intellectually disabled men who were like a small family. On the weekends, Morgan visited with his another family who all but adopted him — a supervisor named Mildred Bolden at the institutional state school where he lived for most of his childhood, fell in love with Morgan when he was five and started taking him home with her.
Morgan was abandoned as a baby, placed in the warehouse-like state school out of necessity. To give him the childhood he otherwise would have never had, Bolden threw him birthday parties and bought him Christmas gifts like he was one of her own.
But Morgan’s radiance began to fade when he was placed in the nursing home. It happened after Morgan went to the hospital for a case of cellulite on his lower legs — nothing serious, no visible sores, his legal guardian and adopted sister, Sharon Barker remembers. But instead of being sent back to the group home, Morgan, as a ward of the state, was curiously sent by Texas to a Katy nursing home, where he would receive no vocational training, no rehabilitation services, nothing but pills and check-ups from the attentive nursing staff tasked with keeping him alive.
And they barely did that, Barker says. Within a few months, the mental regression and physical deterioration was already strikingly apparent. Morgan developed a foot sore so severe the nursing staff recommended his foot be amputated, before Barker stepped in and demanded he receive treatment instead. He was placed in a wheelchair and, still, eight years later, has not regained the strength to walk. Morgan became obese and diabetic and insulin-dependent. The staff put him in diapers.
"I cried the first time he told me he was going to a nursing home, because as a nurse, I knew what it was like," Barker said. "Zak was always happy, but I cried, my mom cried — it was devastating. We thought, What do we do now? We didn't know."
To this day, Barker doesn’t know why Morgan was sent to the nursing home where she almost lost him. Unable to remove him from the home — even after she became his legal guardian — she eventually contacted Disability Rights Texas for legal advice, and at first, attorneys thought the case was an isolated tragedy.
Soon, though, they would find that Morgan’s situation was anything but unique — and that, for some reason, as attorneys claim, Texas had been warehousing thousands of intellectually disabled, middle-aged adults for years in nursing homes where none of them belonged.
Morgan after winning King of the Valentine's Day celebration at his nursing home.
Courtesy of Sharon Barker
Disability Rights Texas, along with the private law firm Sidley Austin and a group in Massachusetts, sued the state in 2010, and before long, they would pinpoint exactly how Texas was failing its disabled population.
After a period of litigation, both parties agreed to work toward a settlement, and an independent reviewer was hired to investigate the holes in Texas's system for roughly three years. “We didn't know the entire scope of the problem,” said Robert Velevis, working on the case pro bono with Sidley Austin. “But we had reason to believe that the issue wasn't isolated just to our clients, but was a systemic problem throughout the state."
When the independent reviewer finished his investigation, Velevis said, attorneys finally understood why they were seeing so many young, capable adults trapped among deteriorating elderly people: The state was failing, in several ways, to thoroughly screen its intellectually disabled population before arbitrarily placing people in nursing homes. Velevis said that by law, if a disabled person can live in the community, the state must do everything in its power to make sure the person receives proper services in small, intimate settings. The screening — intended to help health officials determine what kind of abilities a person has or what services the person may need — is the first step.
“The expert reviewer found a number of problems — and that's probably underselling it,” Velevis said. “The whole system was flawed, and there were people who were both not getting screened at all to determine whether they had disabilities, or if they were screened, they weren't provided the appropriate support and options to be moved into the community.”
Zak Morgan was part of the latter group, said Sean Jackson, his attorney with Disability Rights Texas: Morgan was never screened before he was placed in the nursing home, as though the state was indifferent to whether he had anything left to experience.
"He was trapped," Barker said. "He just stayed in the cafeteria, doing the same activities with the same 70- and 80-year-olds."
Velevis said the state attempted to dismiss the case by simply helping Morgan and the 15 other plaintiffs get out of nursing facilities and find small homes again — though attorneys weren't going to let Texas off the hook so easily, fearing after the expert's findings that thousands of people could be stuck in these nursing homes too. So in May of this year, the attorneys sought — and won — class-action status for those thousands of others, bringing the case back into litigation. (Spokespeople for the Texas Health and Human Services Commission and the Texas Department of Aging and Disability Services did not return a request for comment by press time.)
Among the plaintiffs is Andrea Padron, a woman with brain damage, who died in one of these nursing homes at the age of 29 after spending 23 hours a day in bed, never appropriately screened, Velevis said. Another is 40-year-old Leonard Barefield, who spent more than 30 years working in slave-like conditions at an Iowa turkey processing plant before it was shut down and he was sent to Texas — only to be placed against his will in a nursing home, as chronicled by AP.
Jackson said he likes to call Morgan the “Rosa Parks for intellectually disabled people in nursing homes,” which makes Morgan light up.
“When Sharon Barker called us, that was the start of it all,” Jackson said. “Without Zak, none of this would've happened.”
Morgan, center, with his family. Mildren Boulden, who brought him into the family after meeting him at the state school where she worked, is next to him
Courtesy of Sharon Barker
At the end of the interview, Morgan wheels himself back to the classroom where he spends his afternoons at his day-habilitation center in southwest Houston. Today, he and the small group of others are reading stories aloud, then answering questions about what they learned or liked about them. Here, the staff does more than make sure their health is not failing: Morgan and his friends go on field trips, on boat rides, to Miller Outdoor Theatre. They learn math, reading and writing to keep their skills sharp. They are given free transportation back to their homes at the end of the day — one where Morgan now has his own bedroom.
In a small room at the facility, Barker opens an old photo album she put together, full of memories of Morgan blowing out candles at 1970s childhood birthday parties; Morgan hugging Barker's grandmother, whom he liked to call “Big Momma"; Morgan winning King of the Valentine's Day celebration at the nursing home, with a queen three times his age smiling by his side.
Barker fought for five years to get him back into community living, horrified at one point to find out that the waiting list was ten years long. Jackson says the wait has grown to 13 years since then. Without this lawsuit, and without Morgan, he is unsure the thousands of others would have had a chance to make it out.