Monday, February 23, 2009

Texas lawmakers begin process to close instiutions for people with developmental disabilities

From the Dallas Morning News:

AUSTIN – The battle over how to care for profoundly disabled Texans begins in the Legislature Feb. 23 as lawmakers file a measure to drastically downsize the state school system and expand community living options.

The bill by Rep. Patrick Rose and Sen. Rodney Ellis – the first serious effort to shutter some state schools in more than a decade – calls for closings to begin two years from now and for thousands of people in Texas institutions to be relocated to community group homes or independent living.

"We need for people with disabilities to have a choice about how they receive care. And when there's a seven- or eight-year waiting list for care in the community, that's not a choice," said Rose, D-Dripping Springs, who chairs the House Human Services Committee. "Today, we over-institutionalize. We need to rebalance our system in favor of community-based care."

But the measure faces strong opposition from a vocal contingent of state school parents and lawmakers with large schools in their districts, all of whom say the closings would be disastrous for the residents.

"You'd be trading a tough situation for a far worse situation," said Charles Ferguson of Dallas, who says his profoundly disabled daughter, Rachel, has thrived at the Denton State School for 45 years. He argued that the community care that would replace state schools "is poorly monitored, poorly managed. It's not safe for the people who need the most attention."

Bill supporters acknowledge that the issue is packed with emotion because so many families are affected, and they expect contentious public hearings on the legislation. The hearings are almost certain to include impassioned testimony from state school parents from across Texas.

There's little question Texas' system of caring for its most vulnerable residents needs improving. A 2008 U.S. Justice Department report found pervasive abuse, neglect and other civil-rights violations in all 12 of the state schools. For the last two years, The Dallas Morning News has revealed mistreatment and poor living conditions for Texans with disabilities across all types of care facilities: the state schools, large private institutions and community group homes.

The Rose and Ellis bill calls for the Health and Human Services Commission to design a system overhaul by late 2010. The bill would require that nearly half of Texans living in state or private institutions be moved to community care and that the quality and quantity of such services be improved.

It's a companion bill to emergency legislation Gov. Rick Perry ordered to make state schools safer, a measure co-sponsored by Rose and Sen. Jane Nelson, R-Flower Mound. This one, though, is far more controversial.

The state would have to develop more community-based health care providers, fund more local day-care programs, and hire more employees to work with clients in their homes. No one eligible for state services would have to wait more than two years for community care.

Rose and Ellis aren't sure what their bill would cost the state, but they expect much of the new community care expense to be recouped by shrinking the state schools. About 3,000 of the 6,400 Texans living in public or private institutional settings would be shifted into group homes or independent living.

A steering committee made up of institutional and community stakeholders would determine which state schools would be closed and when. No one younger than 22 would be placed in a state school. And private institutions would be given incentives to transfer their residents into community care.

"We can serve more people for the same amount of money in the most integrated setting," said Dennis Borel, executive director of the Coalition of Texans with Disabilities. "To assume that a large congregate setting is somehow safer than a small group home located in the community flies in the face of any reasoning."

But longtime state school supporters say cutting the institutional capacity in half would send the disability system into chaos.

Existing community resources are inadequate for people with serious conditions and medical complications, they argue, which could lead to deaths. And because many of the patients require around-the-clock nursing or feeding tubes no matter where they are, there would be no cost savings, state-school backers say. Two thirds of people living in state schools require the highest levels of care, compared with a third of those in community care.

While abuse and neglect at state schools often make headlines, they say, at least those violations are being reported. They say they fear that no one really knows what happens in the state's thousands of community group homes because there are fewer witnesses and less public scrutiny. A recent report from the U.S. Government Accountability Office gave Texas poor marks for its system of reviewing deaths in community care settings.

"State schools do have problems, but they're problems we know and can fix, not problems we don't," said Ferguson, founder of Texans Supporting State Schools. "It would be irresponsible to close any of them without a serious evaluation of the [community care] system."