Ready, Willing and Disabled
Giving up her daughter to the state was the hardest thing Ellen Laurence has ever done.
Four years ago, Laurence and her husband decided they could no longer cope with Annie, now eighteen. Born autistic, Annie suffers periodic seizures and often becomes highly aggressive. As a young teenager, she had been expelled from school after injuring three teachers in just one week, and simply trying to control her was becoming a full-time job for the Laurences.
Annie's parents desperately wanted her to remain part of the family, but the older she got, the more disruptive she became.
"Our values and reality did a head-on crash," says Laurence. "We were a family held hostage by our child."
After being turned down by 43 different agencies, the Laurences learned that the state-operated Wheat Ridge Regional Center was willing to accept Annie into one of its group homes. When Laurence had toured what was then called the Ridge Home almost thirty years before as part of a class project, she'd been horrified by the impersonal treatment of people with developmental disabilities (today the preferred term for those once described as mentally retarded). But now she was pleasantly surprised to find that the state cares for Ridge residents in group homes that house just six to eight residents. The homes each have full-time staffers who become like family. Medical services are provided by doctors who work for the regional center, and each resident receives comprehensive care that includes everything from specially fitted wheelchairs to physical therapy.
Annie has thrived since she moved into the home.
"Annie was in diapers when she was admitted," says Laurence. "Now she's completely toilet-trained. She came home at Christmas without diapers and was able to share Christmas Eve services with the family. That's something I'd wanted to do for eighteen years. She's made big strides there."
The state employees who care for the residents in Annie's group home are deeply committed to those with disabilities, Laurence says. "The people who are involved with Annie in just one day have over seventy years' experience," she points out. "This is their career; it's what they've done for years."
But they may not be doing it much longer. Under a proposal the state unveiled last fall, clients such as Annie would be moved to privately operated group homes. Already, developmentally disabled people with less severe problems than Annie's are cared for in such private facilities, where few employees stay more than a couple of months because of the low pay -- sometimes no more than $7 an hour -- and meager benefits. Now state officials are pushing an expanded privatization plan as a cost-saving measure, even though it would save just $1.5 million over five years.
And at what cost?
Parents of the developmentally disabled now in the state system say the proposed plan would be a disaster for their children, who could suffer from neglect, if not outright abuse. Almost unanimously, they praise the care their children have received at the state centers for the disabled in Wheat Ridge, Grand Junction and Pueblo, and they describe the private homes as little more than glorified warehouses.
"If I was convinced the services in the private sector were the same as the state's and just as stable, I would have no problem with Annie being moved," says Ellen Laurence. "But I don't feel that's the case. There's huge staff turnover, and they don't have the same qualifications. In some cases, they receive as little as eight hours of training. At Wheat Ridge, everyone gets at least fourteen weeks of training."
The proposal to move hundreds of developmentally disabled residents into private group homes and lay off 524 state employees is being pushed by Marva Livingston Hammons, the director of the Colorado Department of Human Services appointed to the post by Governor Bill Owens last year.
Hammons, who declined to be interviewed for this story, reportedly was startled by the angry reception her privatization proposal has received so far. After dozens of parents showed up at a December meeting of the legislature's Joint Budget Committee to protest the plan, several legislators said they, too, were skeptical of the proposal.
Hammons has promised to present legislators with a revised plan by the end of this month.
Although Hammons got an early start in Denver's human services system, she earned a controversial reputation when she moved on to more powerful jobs in Michigan and New York City. She's an enthusiastic proponent of privatizing government services and has spearheaded welfare-reform efforts in her previous positions. She has also endorsed budget cuts that some critics say played a role in the murder of a six-year-old New York City girl, as well as the death of a Michigan social worker.
Fearing what similar cuts could do in Colorado, parents of developmentally disabled children say they're haunted by stories of what happened to the mentally ill who once filled state asylums. Many of these residents were discharged into the community in the 1970s, taking with them promises that they would be cared for at outpatient facilities. Instead, hundreds of them wound up homeless, wandering the streets and living in shelters or filling up jails.
"This movement parallels what was done with the mentally ill," says Laurence. "We created a new segment of the homeless population. Is that what we're going to do with this population?"
She believes that the private sector -- with its emphasis on cost-cutting and profit-making -- is exactly the wrong place to protect the state's most helpless residents. "We know how vulnerable our daughter is to abuse and exploitation," Laurence says. "She has more protection from the state than she would in the private sector. People like Annie need the support and services the state can offer."
Getting humane care for the developmentally disabled in Colorado has been a long struggle.
Before the establishment of the state home for "mental defectives" -- later known as the Ridge Home -- in 1910, families with such children were on their own. There was a severe social stigma attached to mental retardation, and stories of exploitation and abuse were common. Horrified by tales of disabled people being kept in closets or treated as virtual slaves, social reformers pushed for the establishment of institutions such as Ridge: They believed the best way to prevent abuse was to have a large facility where the care would be open to public inspection.
Up until the federal Medicaid program was introduced in the 1960s, funding for Ridge and other such facilities came almost entirely from the state. There was often a huge waiting list for space, and newspapers carried sad stories of parents begging for help with children they couldn't control.
"A mother has appealed fruitlessly to the state authorities to take her 13-year-old boy who is mentally defective and a menace to his brothers and sisters as well as to other children in the neighborhood," proclaimed a 1945 article in the Rocky Mountain News. "The boy is big and strong and is continually injuring his smaller brothers and sisters. The mother, too, is afraid of the boy, as are the neighbors."
That same article estimated that 3,000 disabled children were going without care in Colorado. At the time, Ridge had a population of 325, the state home in Grand Junction cared for 425 people, and another 300 "mental defectives" were being kept in the state hospital for the insane in Pueblo because there was nowhere else to place them.
A 1948 Denver Post article headlined "Mental misfits find haven in state home" reflected prejudices common at the time. "Four miles west of Denver there is a colony of the feeble in mind -- all imbecilic off-shoots of society -- who live in a fairyland world of simple ignorance at a cost of hundreds of thousands of dollars every day to Colorado taxpayers," wrote reporter Thor Severson.
This was the Ridge Home, which Severson had toured: "A 16-month-old boy, his face twisted with scars, is rocking forward and backward in endless monotony, his legs tucked animal-like beneath him and his sightless eyes staring vacantly. A hag of a woman, her hair a dusty gray, grinds her toothless gums and stares absently, her face a mask and wrinkled with an age no man could calculate. A teen-aged boy in overalls, his crooked teeth coated with ugly film, sits in a slump in the corner of a room, giggling in a high and shrill laugh at some queer whim of humor his moronic mind created."
The reporter went on to assure his readers that attitudes toward the retarded were far more humane in 1948 than they had been previously. "Society has executed an about face in its attitude toward the helplessly imbecilic as the years have mellowed the heart of man," he wrote. "Today, society builds institutions of brick and stone to house its outcasts. Centuries ago they were tied hand and foot and cast into the sea or were left to die of hunger, or were stoned mercilessly."
But while the opening of state facilities for the developmentally disabled marked a huge advance in their care, over the years the institutions that once seemed a welcome haven were increasingly criticized. In 1985 the federal Department of Justice issued a report accusing the Ridge Home of violating the civil rights of its residents.
Ridge was severely understaffed, the report charged, and some of its residents' muscles had withered due to lack of activity. The government also alleged that some patients had been over-medicated while others had unexplained injuries. The feds threatened to cut off funding if conditions didn't improve.
This report prompted soul-searching and studies by state officials and family members alike. Ultimately, they determined that the developmentally disabled would do better in a more intimate and family-like environment than was available at Ridge. The state decided to close much of the massive facility and move its residents into small group homes run by state employees under the umbrella of the Wheat Ridge Regional Center. By 1992, most of Ridge was abandoned.
Almost universally, the change has been regarded as a positive one. Former Ridge residents thrived in the group homes, acquiring new skills and becoming more social. Some smiled and laughed for the first time anyone could remember.
Under Colorado's current system of caring for the developmentally disabled, people first enter the system through county-based groups known as Community Centered Boards (CCBs). Each client is assessed for his level of disability, which determines where he'll be placed. Only about 10 percent of the 4,000 people in the system actually wind up in state-run homes, and they're usually those with the most complex medical needs.
"There are four levels of need a person could be assessed at," says David Colagrosso, director of the Wheat Ridge Regional Center. "The CCB's job is to determine what services you're asking for and try to meet those needs. If a person is in the system with high needs and they're not able to provide services to that person, they'll approach the regional centers."
The nearly two dozen group homes run by the Wheat Ridge Regional Center are located on quiet residential streets in Wheat Ridge, Arvada and other western suburbs; they look like typical suburban houses on the outside. But inside, each is outfitted to accommodate wheelchairs and has such specially designed features as bathrooms with an automatic lift over the bathtub to lower a disabled person into the water.
At one home in Arvada, eight severely disabled people live in a setting that is remarkable for its normalcy. Many of the residents have physical deformities and some can hardly move, and to an inexperienced observer they might seem oblivious to their environment. But people who take the time to get familiar with these residents can recognize when they're happy or sad, understand what upsets them and even know which television programs each enjoys. And even though none of the residents can talk, the staffers who care for them know which one likes country music and which one prefers jazz.
One recent afternoon at the Arvada house, a staffer is at work in the kitchen, preparing a meal of tuna casserole, broccoli and mashed potatoes. Mimi, a small poodle who lives at the house, is rubbing herself against the leg of a man in a wheelchair. In the living room, where pictures of several of the residents and their families line a wall, a thirty-year-old woman named Miriam curls up on a slant board, staring at the visitors to her home. Miriam is tiny and delicate, and her eyes open wide when someone talks to her.
"If Miriam needs something, she smacks her lips," says Wendy Sime, an occupational therapist who works at the regional center.
Miriam's bedroom, which she shares with another resident, looks like the room of a preteen. Her bedspread has frilly ruffles, and a doll and teddy bear sit atop lacy pillows at the head of the bed. At its foot is a quilt with Miriam's name in large white letters. On the dresser, next to a bouquet of paper flowers, a plaster angel watches over her. Miriam loves music, and she has a stereo in her room. When they need to calm her, staffers know they can place a small radio next to Miriam's ear and she'll listen happily for hours.
A picture of Miriam and her mother embracing sits next to the bed. Miriam's mother is Heidi Boerstler, a law professor at the University of Colorado. She's emerged as a leader of the parents of group-home residents.
"The whole system of care is so terrific," says Boerstler. "These residents are cared about and loved. Miriam is happy there. The person who runs Miriam's home has been in the system for thirty years. For the staff, this is not just a job. They even go out there on their day off."
Like many other parents, Boerstler worries about what would happen if their children were taken from this place, where they've been doing so well, and put in privately operated homes instead.
"One of the things that's so frightening for parents is that their children could be sent into a place where there's no system of treatment," says Boerstler. "The providers at Wheat Ridge know them and care for them. As they get older, these people's needs become more intense."
Many of these residents of state-run homes have complex medical problems. Annie Laurence suffers from an internal infection and has a catheter that delivers medicine directly into her heart. Staffers in her home have worked with her long enough to understand her problems, and they have 24-hour access to the regional center's medical staff. In a private home, the staff would be dependent on outside doctors who often have little experience working with the developmentally disabled -- much like the private-home staffers.
"Annie receives therapy from trained therapists on the [regional center] staff," says Ellen Laurence. "Private therapists wouldn't see someone like Annie."
These parents are concerned that private homes won't make the effort to understand their developmentally disabled children, few of whom can speak. "My son has no verbal skills, but he can cry," says Barbara Bomba, whose son has lived in a state facility since 1967. "I know when he's unhappy."
Bomba speaks highly of the state-run home where her son now lives. "He goes bowling, they go to parties and the Special Olympics," she says. "He loves his home. If he knew he might have to move, he'd cry."
In fact, the state tried to move Bomba's son to a private group home in 1991. She spent weeks researching the place where he was to be sent, and was so appalled by what she found that she fought the placement.
"These private homes are the worst things that could happen to these people," says Bomba. "I asked them, 'Do they ever go to the movies? Do they have a hamburger on the patio?' Hardly ever."
Bomba says she was as alarmed by the staffers she saw as she was by the physical surroundings.
"There was a man there who looked like a taxicab driver. He was large and burly and not very clean," she recalls. "These are not very pleasant jobs, and people just come and go."
But even while they're there, Bomba suggests, a private home's staffers have little commitment to the home's residents. "There's abuse that just doesn't get reported," she says. "These clients are very vulnerable to evil. They're the weakest of the weak."
Teisha Hohn, now an audiology assistant with the Wheat Ridge Regional Center, took a position working with the developmentally disabled at a private home last year. She worked there for $7.75 an hour and received virtually no training. "They were very short-staffed, and I had to stay there alone with four clients," she says. "I never saw a physical therapist come out there. We never got in-services for diet or speech."
After she'd been there four months, Hohn says, the facility was shut down. "It was really hard on one of the ladies," she adds. "She had this book she got the staff to sign when they left, and there were so many signatures in there. She cried and said, 'I'm not going to see you again.'"
It's not just difficult on residents when staffers leave, according to Hohn. "It was really hard on the parents," she says. "They feel the frustration of the staffing turnover. There's only so many places they can go."
And now, if Marva Hammons's proposal is adopted by the state, those parents may have fewer options.
Marva Hammons has worked in social services for decades. She was head of the Denver Department of Social Services before going to work for New York mayor Rudolph Giuliani in 1994. And while she was generally respected in Colorado, she became a lightning rod for criticism when she held the top human services jobs in New York City and, later, Michigan.
In New York, Hammons went along with Giuliani's decision to cut the number of social workers dealing with child-abuse investigations. But in 1995, six-year-old Elisa Izquierdo was tortured to death by her mother after seven complaints to caseworkers went unheeded; social workers said they were so overburdened that they didn't have time to investigate all the complaints they received. At the time, New York had left 200 child-welfare caseworker positions unfilled. When Hammons told the press she hadn't been given the money to fill the jobs, she was widely criticized for failing to stand up to Giuliani and insisting that funding the positions was a necessity.
In 1997 Hammons left New York to take the top social services job in Michigan. She worked for Governor John Engler -- like Giuliani, a Republican who has become known for slashing welfare rolls and cutting back on social services. In 1998, a young social worker named Lisa Putman went to see a Michigan mother whose children had been removed from her home. Putman was attacked by the mother and the mother's sister and strangled to death. Putnam's family blamed the state for reducing social services staffing to the point that Lisa had to venture alone to a household she knew might be dangerous.
In 1999, Hammons was hired by another Republican governor: Bill Owens. The privatization of government services has become a popular platform for Republicans, and Hammons was charged with coming up with a proposal for Colorado's human services department.
Owens has said he wants to find more money in the state budget to fund education. He's been pressuring state agencies like Hammons's to cut their budgets so he can shift $19 million into his educational-reform program. Colorado's human services budget is also being squeezed by the state's fast-growing prison system, which is demanding an ever-larger share of the state budget; the severe constraints on state spending imposed by the TABOR amendment are also affecting funding for the developmentally disabled. Colorado already spends less serving this population than many other states -- one survey ranked the state 44th out of 50 in the amount that goes to the disabled -- but budgetary pressures in coming years may make it even more difficult to provide high-quality services.
"All of the departments have been asked to look for cuts," says state representative Maryanne Keller of Wheat Ridge. "I have no objection to the additional dollars for education, but I do object to where the cuts are coming from."
The state has also proposed cutting mental-health funding, Keller notes, while there have been no suggestions to slash highway construction, one of the governor's priorities.
In December, Hammons released a plan that called for reducing the number of people cared for in state-run homes from the current 435 to just 200, with the rest moving to privately run facilities. Under this proposal, private group homes would receive a higher rate of reimbursement for high-needs clients than for clients with lesser needs, which would allow the homes to provide higher-quality service than they currently offer.
Most of the care provided for the developmentally disabled in both state and private homes is subsidized by Medicaid. The state gets $300 to $350 per day for each resident in its state-run group homes. Since Medicaid is funded with a combination of federal and state monies, Hammons suggests that her proposal could save about $30 a day per resident by moving people into private homes.
But those savings have a price: A survey conducted two years ago by a statewide association that represents the disabled found that the average salaries at privately run group homes were significantly lower than those at state-run homes. Nurses in private homes made an average of $15 per hour, while the state paid its nurses $19. The technicians who provided daily, hands-on care -- doing everything from changing diapers to helping people bathe -- earned as little as $6 in the private homes, while rating an entry-level pay of $10 in the state system.
Such low pay goes a long way toward explaining the turnover in private-home staffing. According to a report presented last year to the Colorado Legislature, the private homes have an annual turnover rate of 67 percent. And the suggestion in Hammons's initial privatization proposal that the pay level be increased by just half a percent -- in accordance with Owens's budget-cutting mandate -- did nothing to calm legislators' concerns. In a full-employment economy, one legislator said, it's unrealistic for the state to offer such an insignificant wage increase.
Indeed, a report prepared late last year by the staff of the Joint Budget Committee described the low wages at private homes as a crisis in the making. "The gap between public and private sector salaries in the developmentally disabled field has become so extreme that [private group homes] are unable to recruit and retain well-trained, experienced staff for this highly vulnerable population," the report determined. "Unless there is an infusion of dollars into the community to stabilize the system, a health and safety crisis may be at hand."
Parents worry that even if the reimbursement rates are increased, the service won't improve accordingly -- and their children will suffer. "This is just another way to get rid of people who can't fight back," says Boerstler. "How often do people come out to give praise to a state program? The parents are saying this is a good system and they should leave it the way it is."
Some members of the legislature tend to agree. A few lawmakers have grown skeptical of the push to privatize services, pointing to problems such as the failure of one of RTD's contractors to provide bus service.
"Often here at the legislature, there is a move to privatize, but we've often seen that we don't really save money, or service deteriorates," says state representative Sue Windels of Arvada. "It's one thing to be left at a bus stop, but this proposal affects people's lives."
Hammons is currently rewriting her proposal for partially privatizing the regional centers, according to a spokeswoman for the Department of Human Services. "The state doesn't have a plan at the moment," explains Liz McDonough, the former spokeswoman for the Department of Corrections who recently moved to Human Services. "We're in the input process now."
McDonough says Hammons will comment on the new plan after it's been submitted to the legislature at the end of the month.
In the meantime, parents of the developmentally disabled, as well as those who work with them, aren't reserving their comments. Privatization has met with mixed success across the country; in some cities, the result has been a horror story. A recent series in the Washington Post revealed a shocking pattern of beatings and rape in Washington, D.C.'s 150 privately operated group homes. The articles detailed appalling cases of residents going without medical treatment and even starving to death because of inept care. The Post found that 116 deaths in the homes had gone uninvestigated over the past seven years, including many deaths that were regarded as suspicious.
Eighty percent of the group homes in D.C. are operated by for-profit ventures. (In Colorado, less than 20 percent of the privately operated group homes are for-profit, althought that percentage has been increasing.) The Post learned that D.C. officials had ignored complaints about the homes for years and even allowed private operators with criminal records to make huge profits off the system. One contractor who collected several million dollars from the city used the residents of his group homes to clean out stables on his Maryland estate, where he raised quarter-million-dollar stallions and housed a collection of Mercedes-Benzes.
Such stories terrify the parents of Colorado's developmentally disabled.
"It's just like the nursing-home industry," says Boerstler. "The only way to save money is to skim on care. These people can't speak and they don't vote. Many of them have no one to fight for them. I can't think of a more vulnerable population."
And some members of that population don't even have parents to fight for them.
Several Wheat Ridge Regional Center staff members have become legal guardians of residents who have no one else to look out for them. Mary Vigil, a nurse, is the guardian of James Castro, a 46-year-old man who has been at the center since he was three years old.
During the first wave of deinstitutionalization in the 1970s, James was sent to a nursing home. Vigil says the home, where James lived for eight years, isolated him from other residents. After the facility was shut down for substandard care, he became homeless and lived on the streets. In 1982 he wound up back at Wheat Ridge.
"Now he lives in a group home with seven other developmentally disabled people, and he's very happy," says Vigil. "There are quite a few people here with no family. The ones without parents would probably be the ones they send out [to the private homes]."
One resident discharged from Wheat Ridge in 1995 was rotated through 39 different placements before he wound up back in Wheat Ridge, Vigil says. "They wouldn't deal with him because he had so many needs."
James has needs, too: He suffers from seizures and must be placed on medication immediately after the onset of an attack. He has to be rolled over every two hours to prevent skin infections. James is also prone to ear infections and has bad teeth, and he panics when strangers touch his face; Vigil thinks he might try to punch a doctor or dentist he wasn't familiar with. He can't feed or bathe himself. And since James can't speak, he can't explain any of this to his providers.
But James still knows what love is.
"When I come into the room, he recognizes my voice and brightens up and smiles," says Vigil. "I have a very good relationship with him. He loves to go to the movies and the Lone Star Steakhouse. He has a blast."
If the state moves ahead on Hammons's proposal, Vigil fears for James's future.
"James is probably one of the ones they're looking at placing in a private home," she says. "I'm just terrified over this."
So are aging parents of the developmentally disabled, who know that one day they won't be around to watch out for their children.
"I feel like we have a very caring staff, both in the group homes and the medical department," says Ruth Ridenour, whose son Ronald has lived in the state's Wheat Ridge center for 33 years. "It takes a special person to work in that environment. They're like a second family to him. I feel very free that there's no abuse. That means a great deal to me."
Her son loves ham radio and stock-car racing, says Ridenour, and he looks forward to the field trips that the home's residents frequently take. For a time, he was even able to work at King Soopers under supervision.
Ronald is 60 years old, and his mother is 81. She worries what will happen to her child after she's gone. If the state won't look after him, who will?
"My husband has been deceased for 25 years, and Ronald doesn't have sisters or brothers," says Ridenour. "I'd like to feel he has some security for the future."
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