By Corrie MacLaggan
AT THE GROUP HOME:
Mac Olive had been on a waiting list since 2000 but moved into a Home and Community-based Services program house in Austin after a few months at the state school, his sister Missy Olive said.
When Missy Olive moved her brother Mac to Austin State School, an institution for Texans with mental retardation, it wasn’t because she wanted him to live there. It was a way to avoid a very long waiting list.
Since 2000, Mac Olive, 29, had been on the list for the Home and Community-based Services program (HCS), which helps people live at home or in group homes.
Nearly 40,000 people are waiting for that program. But state school residents who want to leave the institutions can transfer directly into community care.
“While I wanted him to get off the waiting list, the thought of putting him in the state school petrified me,” Missy Olive said. “I had sworn I would never put him in an institution.”
Debate has raged for years over how best to serve Texans with mental retardation. Now, because of scrutiny from the U.S. Department of Justice, which found lapses of care throughout the state school system, the Legislature appears poised to make significant changes.
Lawmakers are considering a broad range of proposals, from creating an ombudsman to monitor state schools, to capping the number of residents to closing some state schools and putting more money into community services.
The issue took on new urgency this week when Gov. Rick Perry declared state schools a legislative emergency.
Some state officials, including Perry, say the current system of care for Texans with mental retardation provides an array of choices, from the 13 state institutions to smaller state-licensed facilities to community-based services.
But the Justice Department cited neglect and chronic staff turnover (the turnover rate among direct-care workers last year was 52 percent statewide — and 74 percent at Austin State School).
And some lawmakers worry about lax oversight of certain community facilities. Meanwhile, some say that the long waiting list for community care amounts to no choice at all. “If you want to be served at a state school, you walk right in the door,” said state Rep. Patrick Rose, D-Dripping Springs. “If individuals with intellectual or developmental disabilities choose to be served in the community, we ought to afford them that option, and we are not doing that today.”
Rose and state Sen. Rodney Ellis, D-Houston, plan to file legislation that would reform the entire system. It would close some state schools — now home to nearly 5,000 Texans — and create a long-term plan for institutions and programs like HCS, which provides minor home modifications, nursing care and supervision to more than 13,000 Texans.
And Sen. Steve Ogden, R-Bryan, the Senate’s lead budget writer, is proposing to limit state school enrollment and invest in community care.
The Texas Department of Aging and Disability Services spent $458 million in state and federal Medicaid dollars on state schools in 2007, and roughly the same amount to serve thousands more people in HCS.
“We have a system today by accident rather than by design,” said Rose, whose proposal would eventually limit waiting-list time to two years. “It is not fair or right what we’re doing, and it costs the state more how we do it.”
Total expenses of caring for someone at a state school are $125,507 per person per year, compared with $63,529 at a group home through HCS, according to the Legislative Budget Board.
Closing some state schools is something Ogden says cannot be done.
“My view is that it’s politically impossible to close a state school, but we can manage the size of the state schools,” Ogden said. “There’s always a constituency out there in support of each individual state school, and they can usually muster enough political firepower to prevent us from closing any state school.”
Nationally, there’s a trend for states to move away from institutionalizing people with mental retardation, but Texas hasn’t kept pace: The Lone Star State has a higher institutionalization rate than the nation as a whole and has more people living in state schools than any other state.
As other states have found, closing institutions is fraught with thorny political issues. Texas’ state schools have been a part of their communities for decades. They provide thousands of state jobs — Mexia State School is Limestone County’s largest employer — and have a core group of residents and families who firmly believe in them.
That includes the family of Michael Young, 54, who has lived at Austin State School since 1992.
Closing it, says his mother, Ellen Young, 88, “scares me to death.” She said she wouldn’t trust a private home to care for him. “He gets good care here,” said his aunt, Austinite Sally Feutz. “He has a second family here.”
Ten states and the District of Columbia have closed all institutions for people with mental retardation.
In Indiana, the most populous of those states, it took nearly a decade to
close the five institutions there to comply with a gubernatorial executive order.
Residents, with their families, decided where they should go, and the majority moved into homes with three people or less, settings often designed specifically for them, according to John Dickerson, executive director of the Arc of Indiana.
“It can be done; it works,” Dickerson said. “But it’s got to be done from an individual person-centered basis and not by just a wholesale movement of people.” He said his state has even succeeded at meeting the needs of people with a very high level of needs in small settings.
For families that prefer state schools, “their fears are very real,” Dickerson said. “They can’t imagine because no one has ever demonstrated and shown to them what can be. It’s like me trying to explain to you what Paris is like if you’ve never been and you don’t trust me.”
In Texas, Perry hasn’t said whether he supports closing any state schools.
“I do think there is a role for state schools, I do think there is a role for community homes, and I’m going to continue to support those options, because I think Texans should have the choice about where their loved ones should be cared for,” the governor said last month.
But Missy Olive, 41, says moving her brother to Austin State School last year “was our only choice.”
“The first time I went to see the state school … I pulled over in my car, and I bawled my eyes out,” she said. “There were guys falling asleep standing up, taking their clothes off in order to get attention. It broke my heart.”
Olive said that her brother was receiving poor care at a state-licensed “intermediate care” facility in Austin — several lawmakers say those facilities need to be more closely monitored — and that she wanted to get him into HCS but that he still had more than 2,000 people ahead of him on the waiting list.
So she put him in the state school in West Austin, where he lived for about six months. There, she said, he rarely went on outings and was kicked in the stomach twice by other residents.
In October 2008, Mac Olive left for HCS. He now lives with one housemate in a South Austin duplex. There is no live-in staff. Instead, employees of the nonprofit Mary Lee Foundation come in shifts. In the mornings, one helps him fix his Raisin Bran and drives him to a day program. In the evenings, another takes him to shop at H E B or eat at McDonald’s, and a staffer stays at the home, awake, overnight.
“It’s fantastic,” Missy Olive said of her brother’s new living situation. Compared with the state school, “it costs the state less for him to live here, where he has a much higher quality of life.”