Disability Rights Advocates Call for More Community Care

As questions mount over how Medicaid reform could affect state institutions, disability rights advocates on Tuesday told a Senate committee that the state should expand access to community-based care services like home nursing and therapy.

And they raised concerns about a new Electronic Visit Verification program being implemented by the Department of Aging and Disability Services — one designed to ensure state and federal dollars are being properly spent on in-home care.

Advocates from groups like ADAPT of Texas and Disability Rights Texas — which have raised concerns about the quality of care in Texas' 13 large, state-run institutions for the disabled — said Medicaid waivers for community-based care should be better funded and available to more Texans. Currently, there are more than 120,000 people on waiting lists for such in-home and individualized care, said state Sen. Judith Zaffirini, D-Laredo.

They argue community-based care is cheaper, and should be relied upon more heavily, particularly when the state is facing a budget crunch. 

Last fall, DADS was tasked to cut $31 million from its budget. Though the agency pledged not to cut critical services, elements of community-based care like speech therapy and physical therapy took hits. DADS also rolled back Medicaid waivers for some who already used them to get community-based care.

Chris Traylor, the DADS commissioner who will soon be the second in command of the Health and Human Services Commission, said the funding pinch will only grow. Life expectancies in Texas have gone up for people with disabilities, a trend that has also dramatically increased the cost to serve them, he said. In 2001, 11 percent of the state was on state-supported disability service, a number now up to 18 percent, he said.

The federal health reform bill that the U.S. Supreme Court upheld this summer calls for the expansion of Medicaid, largely on the federal government's dime. Gov. Rick Perry has vowed that Texas will reject that federal funding and opt out of that provision. Disability advocates argued on Tuesday that that was the wrong approach. 

“We should be proud of Medicaid,” said Stephanie Thomas, an organizer from disability rights group ADAPT of Texas. “We should not vilify it. Expanding it will cover people who do very important work.”

At Tuesday's hearing, advocates also testified that DADS’ implementation of a computer-based program to track in-home services that the state provides has been troubled. 

Logging service through EVV is difficult and “very time-consuming,” said Debby Salinas Valdez, who has a child with multiple disabilities. Furthermore, she added, not every family has a computer, making it difficult to request service through EVV. 

Caretakers are also discouraged by electronic verification because it creates a detailed data profile of someone’s medical history, raising privacy concerns, said Linda Litzinger, whose daughter is disabled.

“This is really an invasion of our civil rights,” she said.