Feature Life at the bottom

Nationally, Texas ranks among the lowest in funding for mental-retardation services. What does that mean for the future of state schools and community programs?

Editor's Note: This is the second in a two-part series about the social and fiscal dilemmas of caring for people with mental retardation. In Part One, parents, advocates, and caregivers discussed their arguments for and against closing state schools, an issue that has been widely debated in mental-retardation circles and the Texas legislature. Families talked about their children and siblings - Amy, Rix, Steve, Scott, and Barbara - and their experiences in state schools, group homes, and foster care. To protect the privacy of the people and their caregivers, last names have been omitted. To read Part One, follow this link: "A great divide."

For decades, the mentally retarded in Texas had three strikes against them. They languished for years on waiting lists to receive services. Their care hinged on the goodwill of underpaid, overworked, and often unskilled staff. And until a Supreme Court ruling outlawed capital punishment for mentally retarded offenders, Texas executed them.

Thanks to the judicial system, mentally retarded Texans are back to strike two.

In the debate among parents, advocates, and policymakers over whether to close state schools for the mentally retarded in favor of community-based services, as is the national trend, the conversation inevitably turns to money. Here is something everyone can agree on: Texas doesn't adequately fund mental-retardation services. An inequitable tax system, misguided legislative priorities, and bureaucratic inefficiencies contribute to a human-services system that cannot keep pace with the demand.

According to the Texas Department of Aging and Disability Services, the legislature appropriated $783 million through 2007 for the 11 state schools, plus Mexia State School, which includes specialized wings for adults and children with severe behavioral problems and those who have been committed by the courts, and the Rio Grande State Center, which cares for the mentally retarded and mentally ill. Yet that is not enough money to upgrade outdated computer equipment, significantly boost staff wages, or eliminate extensive waiting lists for community services.

Although Cory can't use his upper body, the SASS staff adapted a jig board at the Developmental Center so he can work with his feet putting sprinkler connectors in bags. He can't speak, so to help him communicate he has an electronic talking board on his wheelchair and his home and workplace have pictures on the walls. By pointing to the pictures with his foot, he "says" many phrases, including "I want to go outside," "My name is Cory," and "I love you." (Photos by Mark Greenberg)

To save money, in 2003 the legislature considered closing or consolidating state schools. "It was feasible," says Jennifer Harris of the state's Health and Human Services Commission. "Is it advisable? It was a bit cautionary." In March, a consultant's report found that, because of the outstanding bonds on state-school properties, the state wouldn't be in the black for at least 10 years. Moreover, the report concluded, the stress of closures on state-school residents and their families didn't justify the savings. The fate of elderly and medically fragile people with mental retardation lies at the core of the argument for keeping state schools open. Even if siblings assume legal responsibility for their mentally retarded brothers and sisters after their parents die, parents still worry about how their children will be cared for.

"It's our little secret that we hope our children die before we do," says Elizabeth, a widow, whose daughter Amy is medically fragile and has lived at San Antonio State School for 27 years. Elizabeth's daughter, Susan, will be responsible for Amy after their mother's death. "Parents feel out of control. What will happen to my daughter when I'm gone? It's valid and it needs to be said."

Alta's son, Rix, had lived at SASS since it opened in 1978. Although completely blind from retina disease and an accident, he still enjoyed his life at SASS, including attending church services with his mother. "He seemed very good-natured and accepting of it," she says.

Last fall, Rix suddenly developed a blood clot that traveled from his leg to his lung. He died of a pulmonary embolism, as his father had in 1986. While Alta grieved the loss of her first son, she also felt relieved. "I've thought several times that I don't have to worry about Rix anymore," she says. "And I don't think I have to apologize for that."

Whether it's spending on state schools or community services, Texas ranks among the bottom nationally in funding and services. According to David Braddock's book, Disability at the Dawn of the 21st Century, the statistics for 2000 are embarrassing: 41st in spending on supported employment, 47th in funding for supported living and personal assistance, 40th in spending for community long-term-care services, and dead last of all states in number of community placements per 100,000 people. (See box, page 13.)

"There's no doubt we rank low nationwide for mental-retardation services," says State Representative Vicki Truitt, a Republican from Tarrant County. She sits on the House Appropriations Committee and the Public Health Committee, for which she serves as chairperson of budget and oversight. "There are a lot of competing interests."

Matt, shown here dancing at the San Antonio State School's annual Fiesta celebration, has lived at the facility for more than 10 years.

Truitt suggests Texas' tax system is to blame for chronic underfunding of education and health care: too many sales-tax exemptions and too few businesses paying franchise taxes. "There are a whole lot of people paying no taxes," she says, "and we're not adequately accommodating the growth of Texas."

The $783 million appropriation still falls short of what is necessary to care for the state's most vulnerable citizens. For example, according to DADS documents, funding won't pay for extra caseworkers to handle additional people needing long-term care in the community. In the past decade, the average number of clients per caseworker has increased from 169 to 445.

DADS has also been asked to increase residents' monthly personal-needs allowances from $45 to $60. This alone will produce a $13 million shortfall.

And the Promoting Independence Initiative, a proposed pilot study to analyze the costs and benefits of moving 146 people from private and public institutions into home-based care, was cut by nearly $1 million. As a result, only 95 people will be in the study.

These larger budget woes are felt locally. Nearly two-thirds of the San Antonio State School's budget comes from federal funds allocated by the U.S. Department of Health and Human Services, including Medicaid, which is consistently at risk of being slashed. The rest of SASS' budget comes from state revenues, which SASS officials say never cover the budget. This year's funding shortfall was 4 percent of the $23 million operating budget; to make ends meet, SASS cut back on travel and office expenses and dipped into the workman's compensation fund, which was running at a surplus.

Matt's dream

Dressed in a gray T-shirt, baseball cap, and cotton pants, Matt looks like anyone you might see at church, the grocery store, or on a riverbank, relaxing with a fishing line in the water.

The previous day he had returned from a week-long trip home to Cleveland, Texas, where he celebrated his 44th birthday by going fishing with his family. "We caught two ice chests full of fish," he tells me, spreading his hands about a foot apart, like many fisherman do when they're telling stories of their big catch.

Matt lived at Abilene State School, a nursing facility, and several group homes before moving to San Antonio State School almost 11 years ago. He left the nursing home because of the expense, but enjoyed his life in group homes. In a workshop, he earned money packaging plastic silverware for airports and sorting nuts and bolts.

At SASS, his life is full. He spends time with his friends and works at the Developmental Center assembling sprinkler components. He uses the money to buy gifts for his fiancée and a new rod and reel and tackle box for himself. FULL STORY

During the last session, the legislature approved $241 million from the state's general fund for a $100-per-month raise for unionized state-school employees. Yet many direct-care staff still earn less than $25,000 a year. And the benefits that attract workers to these state jobs have been reduced. New hires used to qualify immediately for health insurance - a major selling point - but now have to wait three months.

Low wages, delayed benefits, and the nature of the job - residents with severe behavioral problems can spit, kick, or hit direct-care staff - has resulted in a 47-percent turnover rate at SASS. "We spend a lot of time interviewing and training and mentoring them, and then they leave and we have to start all over," says SASS Superintendent Ric Savage.

The starting hourly wage for some workers in private group homes is worse: $6.71. For those wages, by the time group homes ferret out criminals and those without a high-school diploma or GED, the employee pool is shallow. "There's not been a cost-of-living raise in five years," says Kitty Hernandez of R&K Specialty Homes. "And it takes a lot of work and staffing to teach them how to care for people."

Yet, the most notable impact of the funding shortages is the waiting list for services. DADS calls it an "interest list," but however you sugarcoat it, 24,000 mentally retarded Texans are in limbo, 10 percent of that number in Bexar County. Rix, Amy, and Barbara - who were admitted to SASS - and Scott, who went into foster care, had to wait an average of two years to get a slot of their choosing. During that time, they received no services. They were luckier than others, however, who had been on the waiting list as long as 12 years. This spring, the legislature started whittling away at the waiting list, appropriating $79.5 million to reduce the list by more than one-third by the end of fiscal year 2006-07. In two years, 14,000 mentally retarded people could still be on the list.

Several bills also were introduced that would have privatized state schools and hospitals. Entities wanting to buy state schools would have to show they could save 10 percent of the current operating budgets; that provision was later amended on the floor to 25 percent. The bills failed. There were no bidders for state hospitals, and only two for state schools, Truitt says, "and they didn't meet the quality standards."

State Representative John Davis, a Republican from Houston who serves on the House Appropriations and Human Services committees, sponsored one of the bills, saying a private system could provide "flexibility and creativity" with strong government oversight. Yet mental-retardation advocates on both sides of the state-school issue say existing private and state facilities aren't monitored enough - in most cases, once a year. Several large private corporations, including Educare, already own hundreds of group homes and institutions in Texas, and advocates wonder about the ethics of earning hefty profits from society's most vulnerable citizens. To save money, the companies would have to cut wages or care, or both.

Steve lived in public and private institutions until moving into a San Antonio group home less than two blocks from his parents' house. He worked at Sea World and now earns money in the cafeteria at the San Antonio Zoo. He won medals in several sports at the Special Olympics, attends church, and takes vacations to Disneyland. "Steve gradually changed from a person who had just existed to a young man who now lives life," his father, Bernard, says.

"In Pennsylvania, we kept them out of the state," says Steve Eidelman, executive director of the Association of Retarded Citizens. "We set a limit on their earnings. They couldn't make a profit, so they didn't come. Are the people doing this inherently bad? No. But 60-70 percent of costs are wages and benefits. To save, you're not going to train them as well or pay them as much. To have a profit incentive isn't good."

It's been nearly 160 years since the first institution for people with mental retardation opened in the wing of a state school for the blind. Over the next century, families who could not, or would not, care for their mentally retarded children sent them to these facilities, which were initially thought to protect the vulnerable from the dangers of society, but in the early 20th century functioned to hide them from public view. "The feeble-minded are a parasitic predatory class," proclaimed Walter Fernald, superintendent of the Massachusetts School for Idiotic Children (later the Fernald State School) in 1912. "They cause unutterable sorrow at home and are a menace and a danger to a community."

In 1967, the number of people in private and public institutions peaked at nearly a quarter of a million people. Among them were San Antonio residents Amy, Rix, and Steve who, in their late 'teens and early '20s, were living in Texas state schools. Yet in the past 35 years, social, legal, and political forces have moved national policy toward deinstitutionalization. By 1997, only 57,000 people in the U.S. lived in institutions, including more than 5,000 in Texas. (See box, page 13.)

Today, state-school opponents cite eight states that have closed their public facilities for the mentally retarded and rely solely on community-based services: Alaska, the District of Columbia, Hawaii, New Hampshire, New Mexico, Rhode Island, Vermont, and West Virginia.

love and happiness

When Brenda, then a physical-therapist technician at the San Antonio State School, began caring for Armando in a rehabilitation program, she didn't know that someday she would be his foster mother and legal guardian. But in May, Armando, who had lived in state schools, including San Antonio's, since he was 4, moved in with Brenda. "I met him and even other people said he had an attachment to me," she recalls. "A bond is there."

She shows me pictures of Armando dressed as Count Dracula at a SASS Halloween party, as a teen sitting in a kiddie pool, and relaxing in his recliner with a toy.

Although he is one of seven children, "all he's known is institutions; he's never known family," says Brenda, who resigned from SASS in 1998 and now works for a private home-health-care company.

As a 1-year-old, Armando suffered a bout of meningitis that left him profoundly retarded and with uncontrollable epilepsy. He can suffer as many as 100 seizures a day and functions at the level of a 12-to-18-month old. He doesn't speak, but he's quite expressive, using different sounds, laughs, and facial expressions to communicate. "He doesn't know anything is wrong with him. This is normal to him." FULL STORY

Seguin native Rod Moline is the director of Alaska's Department of Senior and Disability Services. In 1997, fiscal concerns prompted Alaska to close its only state school, Harborview, which had 45 residents. While Alaska's general fund paid for state-school residents, when Harborview closed, the funding stream changed and the federal government covered 50 percent of the cost for home-based waiver programs.

"A lot of families don't want to hear about finances," he says, "but the legislature says, What does it cost?"

Moline says Alaska used the savings to remove people from the waiting list for community-based programs and to provide services to the previously unserved.

However, the last people to leave Harborview were the sickest and costliest residents. In the community, they need more services, such as apartments with 24-hour care. "There will always be persons for whom some kind of institutional care will be necessary," Moline says, adding that some semi-independent living arrangements have segregated residents who are accustomed to being with other people from their community.

"There can be a forced emotional isolation that takes away from the quality of life," Moline says. "We continue to struggle with it. But overall, the closure has been a fiscal and philosophical success."

In New Mexico, a 1992 class-action suit forced the state to close its two large institutions, Fort Stanton and Los Lunas, which together housed 377 residents. The court ruled that it is a civil-rights violation to require people to live in state institutions in order to receive services.

Cathy Stevenson, deputy director of long-term services at New Mexico Department of Health, says as a result of the closures more mentally retarded people are receiving community services, including supported employment and assisted living, and federal funding has eased the state's financial burden. The state also has limited group homes to four or fewer residents and doesn't license homes with more than six beds.

When the state closed the institutions, the public outcry was vehement. "Many people were very opposed to closing them," says Stevenson, who at the time had a 4-year-old developmentally disabled daughter. "They thought the medically fragile couldn't be served. Aging parents were very fearful of what happens to their kids, and many people thought they got good services at state schools."

Stevenson says that while "the vast majority of residents' lives have improved," New Mexico also grapples with caring for the medically fragile or those with severe behavioral problems. "They need a lot of funding and residential care. We have a handful whose behavior is at the criminal end of the spectrum. We don't have a place that suits their needs."

While states that closed their institutions consider the move financially necessary and socially beneficial, it should be noted that none of the eight states had a large state-school system. West Virginia closed its four schools, which housed 390 residents; most states had one or two schools. And, in Washington, D.C., city health officials launched a probe into many group homes after the Washington Post uncovered rampant abuse in them.

In Texas, such an undertaking would require providing community services for 5,000 people. State Representative Truitt says that after Texas closed the Fort Worth and Travis State Schools as a result of a class action suit, she saw former residents of those facilities living in the streets. "I'm a firm believer in community-based services," she says, "but I don't think we should do away with state institutions. After the court case, not everybody fell into a safe place."

After receiving a routine immunization at age 2 1/2, Rix developed a high fever and doctors later determined he was mentally retarded and autistic. A resident of the San Antonio State School, Rix went blind as an adult, but he remained active. Here, he is feeding a deer near Fort Sam Houston. (courtesy photo)

But Liz, a state-school opponent who found foster care for her 34-year-old son, Scott, says that adequate community-based services must be established before institutions are closed. "I'm not talking about dumping people," she emphasizes, "but the medically fragile should be given a chance to reach their potential. It's not an excuse."

State-school opponents also say that the way mental-retardation services are funded needs to be overhauled. Public and private institutions and some group homes are classified as Intermediate Care Facilities for Mental Retardation; they receive federal and state funds based on how many beds are filled. Under ICF/MR funding, when people leave a home or institution for foster care, the money doesn't follow them, but rather stays with the home or institution, which can fill the vacancy with someone else.

A second major funding source is known as Home-Based Care Service Waivers, or HCS. These waivers pay for services necessary to help people live independently or semi-independently in the community, including day programs, health aides, respite care, physical therapy, adaptive equipment, transportation, home modifications, and case management. In this case, the money always follows the individual, from a foster-care family to an HCS group home to a private apartment.

Opponents of state schools and large institutions argue that when faced with budget deficits for mental-retardation services, it's fiscally prudent to serve people on HCS waivers; the average annual cost for a state-school resident can be as high as $100,000; for an HCS waiver it averages about $38,000.

Parents such as Liz, whose son Scott uses an HCS waiver to receive foster care, say the waivers not only are cheaper, but also allow parents and guardians more quality control over services. "If I don't like a provider, Scott can leave and still be funded," she says. "They're hired by me."

State-school opponents say that long waiting lists, sluggish discharge plans, and lack of information about community resources make it difficult for the mentally retarded to leave institutions. Sherry Hartsfield of Advocacy, Inc. in San Antonio alleges that SASS' discharge teams - comprised of doctors, psychologists, social workers, parents, guardians, and occasionally the mentally retarded person - drag their feet on transfers. A majority of the discharge team has to agree the resident is ready for the community; Advocacy often appeals the decisions. "I haven't won one yet," Hartsfield says.

Savage disagrees, citing statistics that show 20 state-school residents have been placed in the community since August 2003; two returned to SASS.

"We have some clients that don't make it and come back," he says, "but it's never a done deal that you'll always live here."

Texas' state-school population
1967 10,399 1,509 11,908
1977 12,132 461 12,593
1987 7,915 0 7,915
2000 5,338 0 5,338
*Prior to 1987, some people with mental retardation and mental illness were housed in institutions for the mentally ill.

Source: Mental Retardation, December 1998; University of Colorado, 2002.

Number of persons in Bexar County with mental retardation
Total 40,229
Mild 34,335
Moderate 4,421
Severe/profound 1,472
Source: Department of Aging and Disability Services

Number of individuals served by residential setting
Facilities with 1-6 residents 7,313
7-15 residents 550
16 + residents
(includes state schools)

How Texas treatment of the mentally ill ranks among 50 states and Washington, D.C.
Total spent for all MR services 42
Community placements 51
Number of people in homes with 1-6 residents 48
Public spending for community long-term services 40
Source: Disability at the Dawn of the 21st Century by David Braddock. Data is for 2000.


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