Reports of abuse, a federal investigation and the shrinking state budget could be just what disability advocates need to achieve a longtime goal: fewer state institutions and more community-based living services for developmentally disabled Texans who can’t care for themselves.
Since 2009, the 13 state-supported living centers, formerly known as state schools, have endured a barrage of abuse scandals (such as the so-called Corpus Christi "fight club"), subsequent intervention by the U.S. Department of Justice and legislative attempts to overhaul the system. Despite reforms and a settlement with the Justice Department, lawmakers facing a $21 billion budget shortfall in the next biennium will be forced to consider closing some of the institutions. Disability advocates say that could be a good thing. “Times of chaos sometimes present opportunities that aren’t there in good times. And this is a time of chaos, unquestionably,” says Dennis Borel, the executive director of the Coalition of Texans with Disabilities.
Jeff Garrison-Tate, the former president of the nonprofit advocacy group Community Now, says the large living centers are run more like factories than homes. “But the cargo here are people’s lives,” he says. Efforts to improve the institutions haven't helped. He wants the state to shut down several of the facilities and instead finance community-based services, which include home health, hospice and day programs for the developmentally disabled. Right now, Garrison-Tate says, some 80,000 people are on a waiting list for such services.
Borel and Garrison-Tate both say they know that the centers, which are big employers in the cities and towns in which they're located, can’t be closed overnight. A long-term plan would have to be developed to mitigate the economic impact of closures. Shutting down a center in Mexia, with a population of 6,500, would be more consequential than, say, shutting down one in Austin.
Committees in the House and Senate have held hearings on the progress of institutional reforms during the last few months and will submit a report in December detailing recommendations for the next legislative session, which begins in January. State Rep. Patrick Rose, D-Dripping Springs, chairman of the House Human Services Committee, declined to comment through a spokeswoman until the report is finalized. State Sen. Jane Nelson, R-Flower Mound, chair of the Senate Human Service Committee, was traveling and unavailable for comment.
"She is taken care of"
Borel says that convincing parents the state centers should close might be harder than persuading lawmakers. “There have been protectors of these state schools,” he says. “Some of those protectors have been elderly parents who may have put their 50-year-old child in 40 years ago and see it as the only safe place.”
Ruth Esgar says she couldn’t imagine a better place than the Denton State Supported Living Center for her 46-year-old daughter, Marianna. “She has special relationships with everyone,” Esgar says. “And she is taken care of.” Marianna can’t personally speak to her experience there because she has Angelman syndrome, a neuro-genetic disorder that stunts mental development and can impede the ability to speak. But Esgar says the facility gives meaning to her daughter’s life: She can work, dance, eat and enjoy living in a way she couldn’t anywhere else.
Still, Esgar says she does have one concern: the staff. Not the quality, but the quantity. While Esgar believes her daughter receives good care, she has seen staffers come and go because of the heavy responsibilities and low compensation. “If you’ve ever taken care of people around the clock, it can be like taking care of children. People get burned out quickly,” Esgar says.
During the summer, following months of research at the 13 facilities around the state, the auditors hired by the Department of Aging and Disability Services, or DADS, reported that many of the persistent care problems are caused by poor communication and coordination between offices. The lack of staff and constant turnover stretches the current staff thin, the agency found, making it difficult to provide adequate care.
Though medical staff has indeed been difficult to find, recruitment efforts have helped boost the numbers. Back on Aug. 31, 2009, nearly one-third of physician and psychiatrist positions at the centers were vacant, as were one-quarter of registered nurse positions. Now, nearly 85 percent of all nurse positions are filled, according to DADS, and nearly 80 percent of physician, psychiatrist and specialized therapist jobs are filled.
Getting people hired is just part of the challenge. The turnover rate at the 13 facilities varies from about 17 percent in Richmond to 48 percent in Austin, says DADS spokeswoman Cecilia Fedorov. Denton, the center with the largest developmentally disabled population, has a turnover rate of 39 percent.
“Historically, the highest amount of turnover comes in the first six months,” Fedorov says. To combat the problem, DADS is looking to give members of the staff a more effective way to voice their workplace concerns and propose improvements.
At a Sept. 8 Senate hearing, DADS Commissioner Chris Traylor said he believes the agency is making progress implementing reforms that the Legislature and the Justice Department demanded. DADS is aware of staffing trouble and has been working to resolve it, Traylor told senators.
Ironically, while the agency is trying to recruit and retain staff, the population at the centers has been steadily decreasing. As of Aug. 31 of this year, 4,207 people were living in the 13 institutions across the state, down more than 20 percent from 2000.
The agency’s budget is shrinking, too. Like every other entity funded by the state, DADS had to reduce its current budget by 5 percent earlier this year, and it is complying with a request for another 10 percent reduction for the 2011-2012 budget.
While Borel sees the confluence of problems and budget constraints as a perfect storm of sorts, Garrison-Tate is less confident that legislators next year will take the necessary drastic measures and close some of the troubled facilities. “We thought we had our best shot last time with the [Justice Department],” he says. “If it’s not in the heart of people or the will of people to change it, we need to look at our pocketbook.”
Editor's note: This story has been updated to clarify that auditors hired by the Department of Aging and Disability Services reported the problems with state schools. A spokeswoman for the department, Cecilia Fedorov, says the opinions of the auditors are independent of the agency. Garrison-Tate is the former president of the nonprofit. And the number of people on the community services waiting list is 80,000.