Parents and advocates have reached an impasse over whether state institutions for the mentally retarded should close. Yet, while families try to do the best for their loved ones, Texas has abandoned its responsibility to care for its neediest citizens.
| Editor’s Note: This is the first in a two-part series about the social and fiscal dilemmas in caring for people with mental retardation. To protect the privacy of the people and their caregivers, last names have been omitted. |
No one knew Rix was mentally retarded until, at age 6, he didn’t seem to recognize written words and wasn’t ready to attend school. Doctors diagnosed him as severely autistic and profoundly retarded, so Rix enrolled in special-education classes at the Austin Opportunity School, where by age 12, Alta recalls, “he got so hyper, he kept throwing his lunch box through the ceiling tiles, out the window. He really needed a different kind of home.”
So, for 44 years, Rix’s home was a series of institutions, including San Antonio State School, where he lived from 1978 until last November.
Although Rix couldn’t read or write, he occasionally showed flashes of insight and could recite stories that his mother or brother had read to him. “We never knew what to expect of him,” Alta says. “In some ways, he was very sharp and had all this in his mind.”
Mental retardation affects an estimated 2 million to 7.5 million people in the U.S., and its causes are seemingly random: A high fever. A birth injury. A bad fall. Epilepsy, lead poisoning, wayward chromosomes.
Historically, society has penalized the mentally retarded for their misfortune. Until the Civil Rights movement empowered many marginalized groups, people with mental retardation were commonly dumped into the streets to beg, banished to institutions where they were often caged, or sold on courthouse squares to “foster-care families,” usually bidders looking for farmhands.
The self-advocacy movement has led the charge in integrating people with mental retardation into their communities. Yet, there is dissent within the movement’s ranks. In Texas, the fate of thousands of mentally retarded citizens hinges on the resolution of a long-standing, bitter dispute among parents, advocates, and policymakers over two intractable and basic questions: Where should people with mental retardation live? And who should have the right to choose that place?
On one side of the divide are those who want to shutter the state’s 11 institutions, also known as state schools, and relocate their 5,000 residents into community-based programs such as group homes, foster care, or assisted living. They argue that institutions, by their nature, are dehumanizing and drain state and federal funds that would otherwise go toward community programs.
On the other side are those who demand that state schools remain open as an option, especially for the profoundly retarded, those with mental retardation and mental illness, or the physically fragile. They contend institutions are no longer draconian warehouses, but loving places, and best suit the needs of their family members, many of whom cannot speak for themselves.
Neither faction can count on Texas policymakers to lead them to a solution. Texas has the dubious distinction as being one of the nation’s stingiest states in funding for mental-retardation services, creating fierce competition between state schools and community-based services for scarce dollars.
“In Texas, there has never been a value placed on people who aren’t productive,” says Liz, whose son, Scott, lives in foster care. “People who are weak and vulnerable aren’t valued.”
The 500-foot driveway to the San Antonio State School is lined with graceful Italian cypress trees that seem to wave at you when you drive by. As the former Texas Chest Hospital, the facility was the state’s largest tuberculosis ward, but now is home to about 300 mentally retarded people who live in nine long buildings with such names as Yellow Rose, Daisy, and Sycamore.
|Kenny works at the state school Developmental Center, where he earns money assembling parts for sprinkler systems. “I love working here,” he says, adding his dream is to be a truck driver or a professional wrestler, like his hero, the Undertaker. (Photo by Mark Greenberg)|
Inside, day rooms are decorated in maroon or blue; landscapes and nature paintings dot the walls. Residents sleep two or three to a bedroom, and many have stereos and small televisions. You can tell which residents’ families are involved in their lives: Photographs and mementos decorate bookshelves and closet doors. Those whose families have forgotten them have only what the staff brings in to brighten their side of the room.
To the uninitiated, a state school feels noisy and chaotic. The halls echo with joyful shouting and indecipherable moans. Some residents are buoyant and sociable; when Wayne Jones, the associate psychologist, walks into the day room, several residents rush to hug him.
Others residents are withdrawn: They stand motionless and stare, rock themselves on the couch, watch TV. Prone to seizures, many wear plastic helmets and face guards to protect them if they fall.
At the SASS home for residents who need round-the-clock care for illnesses such as cancer, muscular dystrophy, or cerebral palsy, the mood is quieter, primarily because few residents can speak. The day room is filled with people on IVs, feeding tubes, or ventilators. Smooth jazz plays quietly in the background. A staff member massages a woman’s arm. The home smells faintly of urine.
He saw her for the first time in the dining hall, informally known as the canteen. “I said, ‘Look at that female that just walked in.” She had short hair and wore a blue shirt and white pants. “I kept on looking at her, and I winked at her.”
They courted, attending dances and movies together. During breaks throughout the day, they sat on either side of a fence that divides the yards and held hands. FULL STORY
While state-school proponents emphasize that parents, guardians, and even the mentally retarded themselves should choose where to live, the plight of medically fragile and aging people with mental retardation drives much of the argument for keeping institutions open.
Medical advances have increased the lifespan of the mentally retarded, who, as they age, demand additional, expensive services. According to David Braddock in his book Disability at the Dawn of the 21st Century, the average age at death is 66, up from 19 in the 1930s. The journal Mental Retardation cites a 1996 survey of state institutions showing that more than half their populations were older than 40; nearly 8 percent were older than 63. And while the number of profoundly retarded residents living in institutions has decreased, they still comprise more than two-thirds of the institutional population.
Members of the Parent Association for the Retarded of Texas support the right for people to live in the community, but caution that few non-institutional settings can adequately care for their frail loved ones.
Betty, an active PART member, has a 53-year-old sister, Barbara, who transferred to SASS from a similar facility in Mississippi, one of the few states that funds mental-retardation services more poorly than Texas.
“They say it’s going against a person’s right to go into an institution,” says Betty. “I disagree wholeheartedly.”
From 6 months to 6 years old, Barbara suffered grand mal seizures so severe that they irreversibly damaged her brain. Barbara, who functions at the level of a 15-to-18-month old, entered a Mississippi state school shortly after her eighth birthday. “She was and still is self-destructive, mainly by banging her head. And she’s very strong, too. We couldn’t control her,” Betty recalls.
In Mississippi, Barbara was toilet-trained and taught to feed herself. Yet, when she accidentally swallowed a coin, she had to undergo a tracheotomy, a procedure in which doctors cut a hole in her windpipe and inserted a tube that is attached to a ventilator to help her breathe. In Mississippi, doctors told Barbara’s family that she would always need the trach tube and wanted to move her into a hospital. Instead, the family, which had since moved to Texas, opted for SASS. After Barbara moved to SASS in 1995, doctors were able to remove the tube and clean the scar tissue from her throat. She can breathe and eat normally again.
“She’s just blossomed since she’s been here,” Betty says. “She says some words now. In Mississippi I think they had her on more medication. Here they don’t.”
With work at the Developmental Center, music, swimming, dances, movie nights, shopping trips, and other activities, even residents who aren’t seriously ill can live comfortably and happily in state schools, many parents and guardians say. They cite the care their loved ones receive from on-site home managers, job trainers, direct-care staff, nurses, and psychologists, while doctors make daily rounds and are on call.
“I think it’s great if people can go into the community and be happy,” Betty says. “Just don’t try to tell me what’s best for my sister.”
Get up. Get clothes. Take shower.
A sign in a bedroom at a group home in the Harmony Hills neighborhood on the Northeast Side reminds the young man who lives there of his morning routine. The man had been living with his parents when he moved to the six-bedroom house with five other residents, all of whom have mental retardation. Except for red fire alarms on the walls, the house looks like most suburban homes, with a bright kitchen, couches, and a covered deck that overlooks a shady backyard. Each person has his or her own room, and everyone in the home rotates chores: washing dishes, sweeping floors, doing laundry.
A house manager, one of three that work in shifts, completes paperwork on the dining-room table, but otherwise the group home is empty because everyone is at work.
Roy and Kitty Hernandez’ company, R&K Specialty Homes, owns this and 15 more group facilities and oversees seven foster-care families. They hail from San Antonio, but learned to run community-based care in Alaska, which has since closed its only state school.
|Amy, shown with her mother Elizabeth, is a fan of Elvis Presley and George Harrison. A 27-year resident of the state school, she’s also been selected Fiesta Queen at the facility’s annual celebration. (Photo by Mark Greenberg)|
“We saw that people with the right supports could go as far as they wanted to,” says Kitty Hernandez. “All people have the same right to be mainstreamed into society.”
The Hernandez’ challenge is to reassure parents and guardians that their loved ones will be cared for in a small home. An outside case manager and nurse oversee or dispense medication, house managers arrange transportation to the doctor, and Medicaid pays for special medical equipment.
In San Antonio, the first resident of R&K’s first group home, Steve, had lived in large institutions, including Mission Road Development Center and the Austin State School, for 25 years before moving into the community. “He was never happy there `the state school`,” his father, Bernard, says. “Through the years we believed Steve was being cared for, but we still had the parental feeling that something was missing.”
Bernard and his wife rejected several recommendations by the Austin State School staff to transfer Steve into a group setting before relenting, and in 1987 he moved into an R&K home. Although he has suffered a small stroke and has sleep apnea, he works, shops, goes to church, takes vacations, and lives life similar to many 50-somethings. His parents live less than two blocks away.
“Steve gradually changed from a person who had just existed to a young man who now lives life,” Bernard says. “My wife worries about the lost time `in the institutions`, but it’s what we had available at the time.”
While the Hernandezes say that institutions can’t provide the individual attention available in small facilities, they acknowledge that not every person can acclimate to community living.
“There is something about an institution that is so warped,” says Hernandez. “I can’t see putting anyone in an institution, but for those with dual diagnosis `mental retardation and illness`, not too many providers want to or can care for them. We’ve had to return people to the state school because of behavior disorders. To close the state school is not a good move.”
Yet, success stories such as Steve’s bolster the defense of institution opponents, such as Association of Retarded Citizens Executive Director Steve Eidelman, who say the elderly and fragile can and do live in the community. “Most of the people in institutions have somebody just like them living with their mom and dad or in a group home.”
When people think of institutions, they envision residents confined in straitjackets, doped up on medication, or left unattended to languish in wheelchairs.
The Current reviewed the last five years’ of annual inspection records for the state school and the previous two years for Bexar County’s more than 80 private institutions and group homes. That review revealed that society’s most vulnerable citizens can be at-risk not only in large institutions, but in small group homes or day programs.
Since 2000, the state’s annual inspections have cited SASS for minor infractions holes in blankets, broken slats on window blinds and major incidents, including unexplained injuries, sexual misconduct between residents, and medication errors. All citations, according to the reports, were corrected, and SASS is fully accredited.
Five years ago, SASS Superintendent Ric Savage transferred from the Abilene State School, where he had been assistant superintendent. When he arrived, the state had sanctioned SASS after a resident died, not as a result of, but indirectly due to restraint.
SASS had to immediately revamp its restraint policies, including limiting the reasons for restraining a resident and the time he or she could be restrained. SASS also consults more nurses, psychologists, and doctors before restraints are used. Mittens may be used to prevent people from hurting themselves, and staff are trained to defuse conflicts. A staff member may hold residents to prevent them from moving if they are in danger of hurting themselves or others. Mechanical restraints can be used if approved by a doctor and the resident’s personal team of psychologists, social workers, and other professionals.
|Scott lives with his foster family on the South Side. “He’s a child in a man’s body. He’s come a long way,” says his foster mother, Rosalinda. “He’s part of the family.” (courtesy photo)|
SASS’ Human Rights Committee reviews all restraint incidents and monitors the use of psychotropic medication. Charlotte Barnes, who since 1959 has worked in state schools and community settings as a music and drama therapist, serves on the committee. “I’ve never seen misconduct by the staff. They do the best they can,” she says. “I’m not a police officer, but I want an answer.”
Several infractions can be attributed to staff shortages and a lack of training. In one case, a Licensed Vocational Nurse hadn’t been trained on how to insert a gastric tube. In another, a resident temporarily escaped because there were only three staff on duty instead of six.
In the most serious incident recorded in the reports, lack of training for nursing and direct-care staff generally low-paid employees who care for residents contributed to a man’s death. In March 2002, a man, who the report described as “non-verbal and could only respond by grunting” died of cardiac arrest after inhaling his own vomit. For two-and-a-half days prior, he had periodically vomited, suffered from severe constipation, and according to the inspection notes, appeared to be in pain. Yet, during several shift changes, nurses failed to tell one another of the severity of the man’s condition. Although his vital signs worsened in the final four hours of his life, an LVN didn’t alert the on-duty registered nurse or a doctor. In the middle of the night, a direct-care staff member monitoring his roommates every 15 minutes noticed he’d thrown up in his bed. Although nurses performed CPR and called 911, the man died.
Savage emphasizes that many health factors contributed to the man’s demise, noting that more than half of SASS residents have severe medical conditions, putting them at-risk for sudden death.
Intractable epilepsy has caused Scott’s mental retardation and psychosis.
Since 2003, Scott, 34, has lived with his foster family, Rosalinda and her parents. On weekends, he stays with his parents at their home on the Northwest Side. FULL STORY
Sometimes accidents happen. Several years ago, in a dayroom at SASS, Rix, who had a degenerative retina disease that blinded him in one eye, stepped in front of someone who pushed him out of the way. Rix fell and split open his good eye on the edge of a chair, completely blinding him. “I don’t know if that could have been prevented,” Alta says. “I never had complaints about Rix’s care. We kept our eyes on him. It was the best place for Rix.”
Yet, the state has also cited large, private institutions and small group homes for similar incidents, including expired medication errors, physical abuse, and a general lack of interaction with residents.
In early August, a man overseeing two mentally retarded women in the Unicorn day program was charged with raping them in a downtown church. He had passed a criminal background check.
In 2003, at a Council Oaks facility, a staff member allegedly abused clients by pulling them by the ears and kicking and hitting them. Another staff member resigned after testing positive for marijuana; others were terminated for neglect and failure to report abuse.
Also that year, at Wickahoney Homes, a staff member allegedly used a kitchen scrubber to bathe a resident and shaved his underarm. Another allegedly called residents weenies and slammed cabinets. “I’m afraid of him; he might hurt me,” one resident told an inspector. Several staff were fired or resigned. “It looks likes a system breakdown that staff aren’t reporting what is going on in the home,” the report concluded.
Council Oaks didn’t return calls to the Current; at Wickahoney, no one answered the phone, or the line was consistently busy.
Whether the cause is poorly paid, untrained institutional staff or group-home owners, people with mental retardation are vulnerable to the whims of their caregivers.
“There are not enough outside eyes,” says Liz, who says her son was abused in a group home. “You are vulnerable anywhere when you’re disabled.” In a foster home, Liz says, she and her son can build a trusting relationship with his foster parent. “Rosalinda loves him. He’s eons safer.”
Last November, hundreds of people crammed into a small, dim auditorium on the South Side for one of nine statewide public hearings about the future of state schools. (State hospitals were also on the chopping block.)
The hearings were required as part of Rider 55, which was attached to a bill passed in 2003 by the Texas legislature. It requiring the state Health and Human Services Commission to hire a consultant to study the feasibility of closing or consolidating the facilities. In all, 3,000 people attended the hearings, and in San Antonio the tension between opponents and proponents of the closures was palpable, occasionally erupting into disagreements in the hallway. The formal testimony was equally passionate. For three hours, parents, siblings, advocates, interest groups, and consumers (Medicaid’s clinical term for the mentally retarded who receive services) presented their cases to the Public Consulting Group.
This was not the first time the factions had faced off. In the 1985 class-action suit Lelsz v. Kavanagh, the state argued that people with mental retardation have no constitutional right to community services. But Texas Judge Barefoot Sanders ruled in favor of the Lelsz family and all state-school residents, whom advocates named as part of the suit, that Texas must provide community services for the mentally retarded. As part of the settlement, a governor-appointed task force closed Fort Worth and Travis State Schools and relocated several hundred residents of other state schools into community services.
“It was very emotional,” says David Ferleger, who represented the Lelsz family in the case. He no longer practices law, but is an advocate who writes about the rights of the mentally retarded.
PART and Advocacy members attended the trial, which included testimony from state-school residents, including a young man Ferleger discovered tied in restraints at Fort Worth. “People told their own stories and how they were abused,” Ferleger adds. “The positive thing was we had state officials who were willing to enter into a creative settlement and give hundreds of people the right to live in a dignified way in the community.”
Elizabeth, whose daughter, Amy, has lived at SASS for 27 years, attended parts of the Lelsz trial and remembers it differently. “Mr. Ferleger and his ‘expert witnesses’ showed very little respect for parents of state-school residents. There was the strong implication that parents could not possibly know our children’s best interests.
We were made to feel that we were not good parents because we preferred ‘institutionalization’ for our children instead of community placement.”
Elizabeth also testified at the Rider 55 hearing on the behalf of Amy, who was born breech, but developed normally until she was 2 1/2, when she inexplicably became racked by seizures. Amy, who has an IQ of 54, attended special-education classes at public school in the Northeast Independent School District, but by age 10, “she couldn’t keep up with the other kids,” says Elizabeth, “and she was still having seizures, which weren’t controlled by frequent adjustments of her medications.”
Overwhelmed by the amount of care required, Elizabeth placed her daughter at Mission Road Development Center, a private institution. “It was minimal,” Elizabeth recalls, “but we didn’t have anywhere else to go.” After two years on a waiting list, Amy was accepted to the Austin State School in 1966. When the San Antonio State School opened 12 years later, Amy was on the first bus south. Now 55, she is in a wheelchair, still has seizures, and is considered medically fragile. Nonetheless, with her sister, Susan, Amy attended the state school’s annual Fiesta parade wearing beads and flowers. “I haven’t regretted it,” Elizabeth says. “She seems very happy where she is.”
Elizabeth’s predicament is like that of many elderly parents of aging mentally retarded children. “What will happen to my kid when I’m gone?” says Elizabeth, whose husband died 12 years ago. She is also ill, and has been on oxygen since suffering a pulmonary embolism. “People say, I would never put my child in a place like that. Well, they haven’t yet gotten to be 70 years old with a daughter 50.”
Liz testified on Rider 55 on behalf of her son and in support of community-based services. She is a founding member of Every Child, Inc., a non-profit that provides parents with resources on non-institutional choices for their children. In her testimony, she argued that “anyone can live and succeed in the community if they have the proper supports and services. It is imperative for children with disabilities that this state develops a policy that guarantees all children have the right to grow up in families, not in shift-staff settings.”
Scott, the youngest of three children, has suffered from intractable epilepsy since he was a toddler `see story, "Scott: the best of both worlds" in this issue of the Current`. To try to control his seizures, doctors split his corpus callosum, which connects the two hemispheres of the brain.
He lives with a foster-care family during the week and comes home on weekends. “He can get very belligerent and we’re juggling drugs all the time with him,” Liz says. “He is not easy. A lot of foster families turned me down.
“Parents who are fighting this didn’t have choices and services back then,” she adds. “Now the same thing is happening because of long waiting lists for community services. What we’ve found, when done right and planned for, people grow and excel beyond our wildest dreams.”
Last March, after visiting the state schools, hearing testimony, and analyzing financial data, the Public Consulting Group issued its recommendations to the legislature based on several criteria, including marketability of the properties, affect on residents and their families, and proximity to other state schools. Had the consultants recommended closing or consolidating the institutions, SASS would have been near the top of the list. But the consultants advised that all state schools should stay open. For now. •