Beggars Can't Be Choosers
On October 27, a bunch of middle-aged and old people packed the conference room at the Mental Health and Mental Retardation Authority to beg.
It was about all they had left in their arsenal. They appealed to decency, to humanity, to old promises they said were made to them by the state of Texas that now are being discarded on the scrap pile of economic efficiencies.
Texas, which once again finds itself short on cash, believes it can free up money by closing some of its 11 state schools and ten state hospitals housing the mentally retarded and mentally ill. High on the targeted-for-oblivion list is the nearby Richmond State School and its $38 million annual operating budget.
And so now, these people whose children are in their forties, fifties and older, whose sons or daughters have lived 20, 30 or more years in a state institution, are faced with the possibility of trying to find a new home for them.
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A private consulting firm has weighed numbers and is along for the ride on a brief state tour conducted by the new Texas Health and Human Services Commission. Findings will be handed over to the state by year's end. The Texas legislature will take up the matter in January.
Ninety-four-year-old Mary Rosenfield was at the meeting, accompanied by her daughters Ilene Robinson and Rita Sue Rosenfield, who lives at Richmond. From her wheelchair, Mary Rosenfield struggled to explain why even though she loves her daughter, she can't bring her home.
Rita Sue is profoundly retarded. She can be self-abusive, biting herself when upset; and she has a sleep disorder that means she can be up and about at any time of the night. Loud noises upset her; crowds scare her, causing her to drop to her knees in terror. She needs 24-hour-a-day care.
The 57-year-old has lived at the Richmond State School since 1970, two years after the place opened. Her mother was a volunteer who helped raised money to establish the school, which was funded primarily by the George Foundation. In fact, Rosenfield was honored just the other week, named to the Texas Women's Hall of Fame by Governor Rick Perry for her work in the mental health field. So what she says should carry some weight.
But it's not certain that anyone was listening -- at least not anyone with the consulting firm hired to research the "feasibility of closure or consolidation." Public Consulting Group, after all, has been paid $180,000 to find ways to cut costs in the Texas mental health system. And it's going to say no, keep everything open? That's not how it got contracts across the country promising "revenue maximization services."
As several speakers pointed out, the proceedings weren't being recorded. Rather than being a part of the official record, this meeting appeared to be nothing more than an item marked off on a to-do list.
The plan is to, in effect, rate the bottom line of the various state schools and close the least efficient. Patients would then be moved to other institutions farther from their families or told to join community-based programs.
Whether these people would thrive in less-structured community-based programs is one troubling question. Actually, it's one that may never be answered, interrupted by another reality:
Right now in Harris County there are already 3,536 people on the Home Community Services waiting list and 3,714 waiting for any type of mental retardation treatment, according to the Mental Health and Mental Retardation Authority of Harris County.
Dumping a few hundred more into the community-based system poses the question:
"If there are more than 3,500 people on the waiting list and they're not already on it, where does that person go?" asks MHMRA executive director Steven Schnee.
Children aren't brought to places like Richmond State School anymore, which is just as well. Built in another time to house as many as 1,500 residents, Richmond, like other mental institutions throughout the country, has lost population in recent years as more comprehensive community-based programs have opened. Now it has 525 people, but -- as many of its supporters point out -- the "easy ones" already have been moved out into the community.
The people left are, for the most part, those who have been in institutional care since they were young and who have severe mental, behavioral and emotional problems.
Several are wards of the state, with no family to speak of. Others have parents who have "aged out," which means they either can't care for their children anymore or they have died.
Schnee believes there are still people in the state schools who could be moved into the community and prosper there, given the right treatment. And he says the legislature has every right to look at the effectiveness of any state-funded system, as it is doing, thanks to Rider 55 of the General Appropriations Act.
There are also arguments, he acknowledges, that sometimes people living in institutions don't learn to take care of themselves. But even people who've lived long years in institutions can acquire skills to become more self-sufficient in a good community-based program, he says.
What needs to be balanced, he says, are the needs of the insured with the most cost-productive way of meeting those needs. And the recognition that not everyone is the same and that some people have more significantly intensive problems.
Betsy Schwartz, executive director of the Mental Health Association of Houston, a patient advocacy group, was at the public hearing to speak on state hospitals, such as Rusk State Hospital in East Texas.
"If the intent is to save money, then they shouldn't close any state schools or hospitals," she says. If, however, the money would return to Harris County to help with the housing and support-services needs of the mentally retarded and mentally ill here, then she would support that.
What she doesn't want to see is the money taken from an already seriously underfunded mental health system (Texas is in the bottom set of states in terms of mental health and mental retardation funding) and put into building more roads or prisons.
Of course, the people who would be affected by the closure of Richmond aren't just the residents and their families. With 1,300 employees, Richmond State School is the eighth-largest employer in Fort Bend County, and many of its employees lack college degrees.
The legislature did acknowledge that when it set some criteria for assessment. The institutions will be judged on their proximity to other facilities, administrative costs, facility conditions, ease of client transfer and marketability of the property -- as well as the availability of job opportunities in the area for displaced employees.
Showing bipartisan support, state Representatives Dora Olivo, a Rosenberg Democrat, and Sugar Land Republican Charles Howard spoke against the closure.
"When we passed Rider 55, there was no intent that Richmond State School would ever be closed," Howard said. "There are lots of ways to cut money without cutting citizens who need care. Nothing is more important than the clients themselves. Richmond needs some repair. But it does a lot with what it has."
Olivo agreed. "One of the things I'm about is meaningful choice. We're taking that away. It's slowly eroding."
And several people criticized the study itself, saying it didn't factor into the equation the needs of the patients. One man took issue with Harris County being included in the employment pool statistics, saying it diluted the true impact that closure would have on the surrounding community. Nearly all of the employees come from Fort Bend County or Wharton, several people said.
As to the marketability of the property, both Howard and Herb Apple of the Greater Fort Bend Economic Council questioned whether the 241-acre site and buildings could be marketed or if the property would revert to the George Foundation. According to Richmond State School officials, that question is now being researched in the land records of more than 30 years ago.
Olivo didn't think much of the "marketability" criterion. "Marketability when we're talking about people who can't take care of themselves? That's not a good word to use."
Apple, who described himself as "an expert on marketability," said no one should expect any windfall with the sale of theschool. "That land is poorly positioned."
Not everyone at the meeting was against closing some of the schools. Judy Kantorczyk, executive director of The Arc of Greater Houston, asked the group to "look honestly at any consolidation so we can concentrate on direct care services." The Arc advocates the end of institutional settings for all patients in the mental health system, a position that is not altogether unbiased for the nonprofit, since it makes its money from the patients who enroll in its community-based services and it advocates on behalf of private providers.
David Truran of Advocacy Inc. of East Texas, a nonprofit advocacy group for the disabled, said his organization is on record calling for the closure of long-term facilities. At the same time, he said, "We do not want to see the money go into potholes and roads. It's not a bait and switch." With care and planning, he said, Texas could move people without negative impact. Studies have shown that "all individuals, regardless of age, show positive gains after moving to a community setting."
And Melanie Oldham, who has spent 22 years as a physical therapist and has a child with mental illness and another with mental retardation and mental illness, said there was less risk of neglect in a community-based system where the parent can be right there to see what's going on.
But far and away most parents took their turns offering up bittersweet anecdotes about their children's problems, the hard and sometimes heartbreaking choices they had to make and the solutions that Richmond and other state schools have provided.
The mother of a 40-year-old blind, mentally retarded child who went to Austin State School at age seven said: "He couldn't do anything for himself except play with a string."
One parent of a 59-year-old said he was glad his son, who has a lot of medical problems, was right by Polly Ryon Memorial Hospital. Another father said, "We had 18 years of misery in our home for our son. Misery for him more than us. He's been at Brenham [State School] and he's got a life."
Louise Abt talked of her son Walt Wingo, who has "huge problems" and has been institutionalized since he was four years old, coming to Richmond when he was 18. With all this talk of returning the institutionalized to the community, Abt said that people should understand that for Walt, Richmond is the community. "Walt is deeply attached to the good people who work there."
Gladys Conner warned of what she said were high mortality rates experienced in other parts of the country when institutionalized people were dropped back in the community and many of them ended up homeless.
Dr. Harold Gottlieb said doctors in the community are often not equipped to deal with the special needs of the profoundly retarded. "An HMO's ten to 12 minutes is not enough time. They need physical and occupational therapy and one place where all their needs are taken care of."
John Fowler of the Richmond State School Parents Association said his 45-year-old daughter initially was placed in two group homes and it was a disaster because they couldn't handle her. He got her an emergency placement to Richmond, where she immediately was taken off all the medication she'd been on. She's been there about 20 years and has the freedom to walk around campus.
Jeanetta Cooper is the niece of Robert Tracy Jr., a Richmond resident. "When my grandparents put my uncle in, they made a promise they would take care of Robert. No one can come and say, 'We're going to move you now.' "
Richard Wilfong has a 47-year-old schizophrenic daughter who requires supervision 24 hours a day. She stayed home until she was 13, then it was too much for them. She was sent to Brenham State School initially, but then moved out.
"Devon's hands don't work very well. She was put in a group home with a compulsory work program. She couldn't do the work. There was very little supervision. She was allowed to walk out anytime she wanted to. We had to work desperately to make sure she was returned to Brenham State School. She was unable to handle the situation," Wilfong said.
"It is great until they walk out of those community homes and start living under bridges."
Rita Sue is a stooped and tiny figure as she makes her way to the horse arena at Richmond State School, accompanied by longtime school employee Renee Salazar.
It's a big day, a huge day. Rita Sue is going to ride a horse for the first time, carefully surrounded by instructor Jesse Gonzales and his wife, Tammy, who volunteers there, as well as equine therapist Ruth Sebring.
It took three years to work up to this day. Three years of petting the animals in the petting zoo and the cats and then the horses. Arena manager Tracy Semmler sent a riding helmet over to Rita Sue in her dorm so she could get used to wearing it.
Rita Sue is up on the horse and quiet and not biting herself as she goes round and round and round. Her sister Ilene cries and hugs everyone standing nearby. Her mother beams from her wheelchair.
All doesn't go as well as soon as Rita Sue gets off the horse. She spots the crowd of onlookers and tries to get away. She's glad to see her mother and sister but wants nothing to do with anyone else. She bites her hands, covered with gloves, and Salazar moves quickly to stop her, to soothe and calm her. Rita Sue buries her head in Salazar's chest.
"When I first moved to El Campo five years ago to take care of Mom, I had had Rita come for an overnight," Ilene recalls. "I put Rita in her bedroom. All of a sudden around 3:30 in the morning I heard a cabinet slam. There was Rita completely dressed and all the lights were on. I stayed up. She rocked in the rocking chair. At 9:30 I was like a basket case. I was taking care of my mother and my sister. I had planned to take care of [Rita Sue] for two days. I called my husband. He took my sister back."
Moving Rita Sue to another facility would be devastating, Ilene is convinced. Richmond is the only state school with a horse-riding therapy program. So the last three years of accomplishment in that area of Rita Sue's life would be tossed away.
And then there's the proximity issue. "The tragedy of it is that she would probably be moved to Austin or Corpus Christi, and that's a pretty prohibitive trip." She's not sure it's one her 94-year-old mother could make.
"I can't talk to her on the telephone. I can't send her letters because she can't read. The only way you can reach her is to meet with her in person, face to face."
Dayle Bebee Aulds is the founder of Advocacy Inc. at its Austin headquarters. She looks at years of work and sees the recent reorganization of the Texas human services system (effective September 1) as a sea change in how social service needs are going to be met in this state. "You have a new generation of administrators. The people now coming into the human services area, their goal is to save money. Previously these people were social workers who worked their way into administrative positions."
Despite her organization's years of litigation and advocacy to get people released from state schools in Texas and mainstreamed into the community, Aulds says some people, like Rita Sue, are best served staying at places like Richmond State School.
The shortage of dollars has split the mental health community in a far more devastating fashion than any philosophical differences.
As Aulds points out, families who worked for years to get any kind of services for their children in Texas and were successful in getting improvements to the state schools and are happy with that system are fighting with people who worked hard to get more community-based programs. "People get polarized and people get mischaracterized on both sides."
As Herb Apple said: "We've tried to divide and conquer. We've pitted these people at each other's throats for meager dollars."
Schnee acknowledges it as well. "Everybody's scrambling, looking for resources. I think we have to be careful not to forget about the people we're here to serve."
Sobering words that should be remembered, especially when we seem to be on a cost-expedient road to tragedy -- if, of course, you measure your success in human lives, as well as in dollars saved.
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