IN THIS ISSUE:

• House and Senate Schedule Hearings on Lubbock State School
• Advocates to Legislators: “Rainy Days” are Now for Community Services
• Baby Emilio Gets Short Reprieve

 

HOUSE AND SENATE HOLD HEARINGS

ON LUBBOCK STATE SCHOOL

Committees in both the House and Senate are taking a closer look at all state schools in light of the recent Department of Justice (DOJ) report on conditions at the Lubbock State School. Although the DOJ report was issued in December, it was late March before it generated widespread interest. Several major news outlets reported that Sen. Eliot Shapleigh, D-El Paso, asked Lt. Gov. David Dewhurst to hold hearings on the report.

(Note: See the Texas Action Update for Feb. 12 for more information about the report and DPC’s position statement on state schools.)

DADS Commissioner Addie Horn was the only speaker invited to a hastily-called March 29 meeting of the Senate Health and Human Services Committee. Chairperson Jane Nelson, R-Lewisville, said the committee wanted assurance the state school situation was not like the Texas Youth Commission, which is in the throes of a major sex-abuse scandal. After Horn’s testimony, which included a timeline of contacts she says DADS staff made with legislators from the beginning of the DOJ investigation, members concluded the situations are not similar because there does not appear to be a cover up.

Horn’s testimony began on a grim note as she reported the January death of a Mexia State School resident. Department of Family and Protective Services’ findings issued March 29, indicate the cause of death was related to improper use of restraints. Three school workers were immediately terminated, Horn reported, and the case has been turned over to law enforcement.

Horn proceeded to outline a series of “improvements” made since a verbal exit interview with DOJ’s officials after their monitoring visit to the Lubbock State School. They include replacing the school superintendent and other key staff and improving staff training, among other things. She said DADS is working with Columbus Medical Services, an “expert” consultant that helps states respond to DOJ findings. A report issued by the consultant that outlines the action plan has not been released publicly, she said, because it will likely be used to negotiate a settlement with DOJ. She attributed many of the 194 deaths at all state schools since June 2005 to fragile medical conditions, shortened life expectancy due to disability and noted that 115 of the individuals had Do Not Resuscitate (DNR) orders on file.

Horn said DADS is stepping up efforts to inform Lubbock State School residents about choices of living in the community. And, responding to questioning, she said the agency plans to institute improvements made in Lubbock to other state schools soon.

Listen to an archive recording of the full hearing!

The House Human Services Committee has scheduled its own meeting on the state schools for April 5. DPC is writing Patrick Rose, D-Austin, the committee chairperson, to request that he invite a representative of Advocacy, Inc. to report on findings of that agency’s recent monitoring visits to four state schools.

 

 

ADVOCATES TO LEGISLATORS:

FOR COMMUNITY SERVICES “RAINY DAYS” ARE NOW!

It wasn’t raining in Austin on March 28, but several DPC member organizations and other advocates raised their umbrellas at the State Capitol to send a message to legislators about funding the waiting lists for Medicaid waiver services. At a rally and news conference, representatives from the Disability Policy Consortium, ADAPT of Texas, AARP, Texas Advocates, Coalition of Texans with Disabilities and the Texas Parent Advocacy Coalition (TXPAC) urged members of the House Appropriations and Senate Finance committees to tap into the state’s “Rainy Day Fund” to reduce the waiting lists by 20 percent over the next two years.

As reported in the last Texas Action Update, neither budget committee has earmarked funds to reduce the number of people on the waiting lists, though both have included funds to account for population growth. That does nothing to address the 100,000+ people who are currently on the waiting lists, many of whom have been waiting for services in the community for years.

Senator Judith Zaffirini, D-Laredo, offered some hope that the Senate Finance Committee intends to add funding to reduce the waiting lists. She anticipates as much as $100 million being added to the Department of Aging and Disability Services (DADS) budget under SB1, the Senate’s appropriation bill. The rest that’s needed (approximately $155 million) she hopes will be included on the “wish list” legislators will consider toward the end of the session.

 

 

BABY EMILLIO GETS SHORT REPRIEVE

The Disability Policy Consortium has developed a position statement in support of allowing families—not hospitals—to make end of life decisions. Several DPC member organizations and other advocates are working with legislators to pass a law to require doctors to treat terminally ill patients until another facility can be found to accept them. HB 1094 and SB 439 have been assigned to committees in the House and Senate and are collecting co-sponsors. At this writing, they are not yet scheduled for hearing.

While the bills make their way through the legislative process, a real-life drama illustrates their significance. The family and lawyers for 16 month old Emilio Gonzalez have until April 10 to locate a hospital that will care for him through the end of his life. The April date is a compromise reached by Austin’s Children’s Hospital and Emilio’s family. Initially, the hospital had planned to remove Emilio’s life support on March 23.

The baby has Leigh's Disease, a rare disorder that causes the central nervous system to collapse and motor skills to degenerate. While there is no hope for his recovery, Emilio’s mother wants him to die on his own terms—not a hospital’s timetable. Texas law, however, allows hospitals to end life support 10 days after doctors decide to withdraw treatment. As the initial date approached, Emilio’s family and supporters had been unable to find alternate care for him. The extension gives more time.

The baby has Leigh's Disease, a rare disorder that causes the central nervous system to collapse and motor skills to degenerate. While there is no hope for his recovery, Emilio’s mother wants him to die on his own terms—not a hospital’s timetable. Texas law, however, allows hospitals to end life support 10 days after doctors decide to withdraw treatment. As the initial date approached, Emilio’s family and supporters had been unable to find alternate care for him. The extension gives more time.

 

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