Earlier this year, a man died at Austin’s state-supported living center, one of the state’s 13 institutions for people with developmental disabilities. An investigation ensued, and it soon became clear that the man died as a result of neglect.
He had lived at the center for 50 years, had been hospitalized twice in the months before his death because of gastrointestinal problems, and he was supposed to be monitored closely by staff. While eating dinner the evening of Feb. 13, he began to moan in distress. His stomach was “extremely distended,” according to the investigation report.
Instead of medical attention, the man was simply taken to another room, placed in a chair and left alone. Surveillance footage revealed that the man soon began kicking out his legs forcefully, and then stopped moving. About 10 minutes later, an employee noticed he had turned blue. Despite attempts to resuscitate him, he was pronounced dead an hour later.
That’s just one example. The centers, formerly known as state schools, have been avoiding accountability for years. Since 2009, when the U.S. Department of Justice ordered the state to improve conditions at all 13 locations, federal investigators have threatened to cut funding to the centers more than 50 times, most recently in May of this year.
Reform has been excruciatingly slow. After six rounds of DOJ reviews since 2009, only one center has achieved more than 30 percent compliance across 161 categories the federal and state governments agreed are in need of improvement — things like reducing incidents of abuse/neglect/exploitation, disturbingly categorized in official reviews as “ANE data trends.” The deadline for full compliance with the DOJ terms was 2012; to date, none of the facilities have achieved even 33 percent compliance.
Substandard care has become so commonplace at centers that the 2013 state budget actually accounts for cases of “anticipated” abuse/neglect/exploitation — more than 700 for this year alone. Some have argued that problems persist because of lack of funding for staff, and yet state expenditures on at the centers have risen, along with staff levels, even though the number of residents has been declining steadily for decades. The state last closed centers in the mid-1990s, reasoning that the remaining 13 institutions provided adequate capacity. The current population has declined by 42 percent since the mid-'90s, yet the state continues to operate the same 13 facilities.
The population is shrinking, in part, because institutionalization is becoming increasingly outdated as a viable, humane form of medical care. Families are seeking out community services and supports in their own homes, in privately run group homes or through other arrangements to care for their loved ones with developmental disabilities.
Meanwhile, the centers have become increasingly costly for state taxpayers. New rates effective this month come to more than $257,000 per resident per year. By comparison, the average annual cost per resident in privately run group homes came in at less than $54,000 in the 2014-15 state budget.
These 13 state facilities, some nearly a century old, are derelict and inefficient. Maintenance costs alone are estimated to exceed $95 million in 2014, up from $76 million in 2010. The time has come to consolidate the population in fewer facilities and close the centers that have no chance of ever reaching minimally acceptable standards.
Past proposals have gotten nowhere. Family members, who may have institutionalized their loved ones decades ago, do not want the centers closed, no matter how poor the care. State legislators with centers in their districts are concerned about the loss of jobs, especially in smaller communities.
But the status quo cannot continue. Community-based solutions will improve accountability, and community is what Texans want; 25,000 people eligible for placement in the centers currently are served in cost-effective community programs. Another 129,000, eligible for immediate placement in a center, choose to stay on community waiting lists that stretch more than 10 years into the future.
Although abuse and neglect sometimes occurs in private group homes, those facilities get shut down in the face of such violations. State centers, no matter how bad, are rarely closed. Responsible reform would increase accountability, provide community placement for all who want it, guarantee institutional care when families prefer that option and provide appropriate assistance for displaced workers.
Warnings and threats have gotten us nowhere. State-operated institutions cannot be relied on to police themselves or enact needed reforms and inaction has come at the expense of Texans with developmental disabilities. Other states have managed to shut down failing institutions and successfully move residents into community-based settings, and Texas should join their ranks.
Arlene Wohlgemuth is the executive director of the Texas Public Policy Foundation and director of its Center for Health Care Policy. Dennis Borel is the executive director of the Coalition of Texans With Disabilities.