Barbara Chandler says she would love it if her daughter Lisa could say, “Mama, I’m hungry.”
But Lisa can’t talk, can't walk, is blind and has to be diapered. For 44 years, she has been a resident of the Lufkin State Supported Living Center, one of 13 state homes for people with intellectual and developmental disabilities. Chandler said she and her family cried all 76 miles from their home in Tyler to Lufkin when they dropped off Lisa. But “that was the wisest and best decision” they could make. Now, she fears that Lisa would have her home taken away as legislators consider creating a commission to evaluate the future of state-supported living centers.
“There’s a place for group homes, and I wish my child could fit into that category, but she doesn’t,” Chandler said. “I want her in that safe care facility so when I leave this Earth I know she’s going to be cared for.”
Legislators are continuing to battle families with relatives in state-supported living centers about the facilities’ future. In 2014, a state commission found that Texas could “no longer afford” operating costs for the state-supported living centers. Despite the centers' low enrollment and high operating costs, legislators have expressed reluctance over the years to completely do away with them. In 2015, Texas legislators nearly had the Austin State Supported Living Center closed, but an amendment saved the facility.
Former residents and families of current patients in state-supported living centers waited for hours on Wednesday for the chance to urge Senate Health and Human Services Committee members late in the evening to not close the centers through Senate Bill 602. The bill would create a commission tasked with determining the fate of Texas’ state-supported living centers by 2018.
Sen. Juan “Chuy” Hinojosa, D-McAllen, the bill’s author, said there would always be a need for state-supported living centers but that Texas needs to consider how many there should be and how to get better support services for the facilities, in addition to keeping patient safety in mind. He pointed out the centers have faced reports of abuse, sexual assaults and residents that have escaped. He said if members make a decision based on emotion, they “will actually end up hurting” the residents.
“The problem is not going away, it’s getting worse,” Hinojosa said. “We cannot decide to do nothing. We have to address it.”
SB 602 would create an eight-member commission to recommend which centers should be consolidated, downsized, repurposed or closed. The commission would not be allowed to recommend more than five centers to close. It would have to consider a variety of factors for each center’s future, including operating costs; location; services provided; availability of services in the community; the center’s property value; and input from families and guardians of residents in the center.
The commission would also be required to consider how each state-supported living center is complying with a 2009 federal settlement agreement. Texas lawmakers agreed to a $112 million settlement with the U.S. Department of Justice over abuse and neglect at the facilities.
More than 3,000 people live at the 13 centers. Families say the centers allow their loved ones to be a short driving distance away, have constant care and have a community where they can make friends. They fear moving them out of the facilities into group homes could put them in danger.
Sen. Dawn Buckingham, R-Lakeway, whose district includes the Abilene State Supported Living Center, said it was important for the facility to stay open because of its unique geographic position in the state. She said that she was “deeply concerned” about SB 602’s potential harm to residents and that a transition plan for the state-supported living centers would not be enough to ease families’ fears.
“They need to know that their loved one will be able to have 24/7 care they need to survive,” Buckingham said.
But members also heard from several people living in community group homes. Opponents of the state-supported living centers point out that the state has more than 100,000 people on waiting lists for community care and will probably never get in. They said community group homes would be less costly and would give residents more freedom.
James Meadours, a member of Texas Advocates, a group focused on self advocacy for people living with disabilities, said he is No. 14,646 on the waiting list for community-based programs. He said he prefers living in the community because he can choose his own doctors and is learning to cook. He told legislators he had previously invited Senate Finance Committee members to come for dinner.
“I also want you guys to come over to my apartment and eat my meals,” Meadours said.
Dennis Borel, executive director for the Coalition of Texans with Disabilities, said during the hearing that SB 602 provides lots of protections so that residents would not be forced to move into the community against their will. He said Texas closing down a facility is not as hard as opponents of the bill make it out to be.
“There are people that will tell you that this is about taking money from institutions and moving to the community, that is, in fact, the reverse of what is true,” Borel said.
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Disclosure: Dennis Borel has been a financial supporter of The Texas Tribune. A complete list of Tribune donors and sponsors can be viewed here.
Correction: A previous version of this story incorrectly characterized the waiting list James Meadours is on. He is on a waiting list for community-based programs.