Texas family loses custody of daughter with Down syndrome because they refused to put her on psychotropic meds

From The Texas Tribune:

Frank and Chila Covington (pictured) could hardly be mistaken for cruel. They cared for their disabled daughter at home in an era when many parents turned to institutions — showering Ceci, who has Down syndrome, with love, affection and opportunity. After her brother and cousins went off to college, they enabled Ceci to "graduate" in her own way: They found her a group home with two other young women.

But when the Covingtons argued with a group home provider who insisted that Ceci needed psychotropic medication, they lost their daughter entirely. After the provider accused the Covingtons of “cruelty,” a Tarrant County judge called a secret hearing and removed the parents’ guardianship, barring them from seeing the child they’d spent four decades raising.

“Ex parte,” or emergency, removal hearings have been legal in Texas guardianship cases for nearly two decades. They're designed to rescue incapacitated people in immediate danger. But in some courts around the state, advocates say, they’re being used to remedy even routine disagreements, effectively denying parents, adult children or other guardians the chance to defend themselves before their loved ones are seized.

Probate judges and court-appointed attorneys contend that they must protect those who can’t protect themselves, and that some cases demand drastic and immediate action. They say guardians who are removed can appeal and get reinstated if they’ve been wronged. “The Legislature has said we’re out here to protect the individual, not to protect the guardian,” says Travis County Probate Judge Guy Herman, the presiding probate judge in Texas. “What you have going on here is people who have done something wrong coming down to the Legislature, going to the newspaper, instead of trying their case in a court of law. In essence, they’re trying to intimidate judges.”

Removed guardians and elder law experts say they’ve been forced to seek outside help because they don’t stand a chance in the courtroom. They say the probate system’s close-knit web of judges, court-appointed attorneys and nonprofit guardianship companies is impenetrable and stacked against families with no legal experience and few financial resources.

“The law was set up for kids you find lying in their feces, or beaten — not for kids who have been loved and cared for their entire lives,” says Frank Covington, a 65-year-old engineering consultant who has had to take on extra hours to pay the mounting legal fees in his fight to get his daughter back. “But it’s being abused by the court.”

State Sen. Jane Nelson, R-Flower Mound, says she heard “troubling” testimony about a lack of transparency in the guardianship process at a recent legislative hearing, including one mother who “was not notified of her own son’s death.” She says she’s looking into changing the law on ex parte hearings when lawmakers reconvene in Austin in January — a move that would face staunch opposition from probate judges and some disability rights advocates who fought for tougher abuse prevention tools in the mid-1990s.

When Ceci was born on Valentine’s Day 1971, the doctor warned the Covingtons that they might want to give her up to adoption or an institution. But the couple treated her Down syndrome as a "gift from God." Chila Covington had a master’s degree in occupational therapy and had committed her career to working with children with disabilities.

For the next 35 years, they showered Ceci with love and treated her like any other member of their massive extended family: She went to high school, played with her younger brother, took piano and swim lessons and became a fixture at family weddings and reunions. Her parents committed their lives to her development, using Montessori educational techniques, videotaping her progress and eventually helping her find work at a local department store.

Once children with disabilities become adults, they often need legal guardians to manage their decisions, and Ceci was no exception. In 2001, the Covingtons sought and received guardianship of their daughter, an easy step they never dreamed they’d have to fight to maintain. Around that same time, they started to worry what Ceci’s life would look like when they were no longer around — and began investigating group homes. “I wanted her to be self-sustaining for when we’re gone,” Frank Covington says.

It took years for the Covingtons to find a group home that they considered suitable, where Ceci would live with two young women she knew. Her mother was so nervous she spent the first three nights there with Ceci, helping her settle in.

The first year at the Champion Services group home in Grapevine, Ceci thrived. The trouble started in 2007, the Covingtons say, when staffing changed. Ceci started having persistent headaches, and her mother took her from family physician to neurologist to sleep specialist. She was diagnosed with severe sinus problems, then sleep apnea. Her headaches and restless sleep led to crankiness and tantrums.

Ceci's care providers believed psychotropic drugs would solve the problems, the Covingtons say, and put Ceci on them without asking her parents' permission. When they found out, they were livid, insisting they rule out all of Ceci’s medical problems before pumping her with antidepressants that could have side effects. (Champion Services, which still cares for Ceci, did not respond to an interview request.)

From there, trust eroded on both sides. The Covingtons say Ceci's providers continued to push for psychotropic drugs and a psychiatric evaluation. The Covingtons were convinced the group home wanted a psychiatrist’s diagnosis so they would get more money for treating her. Finally, the Covingtons say, the staff at the group home threatened them — telling them they were going to report the Covingtons to Adult Protective Services for abuse and ask a judge to remove them as guardians if they continued to resist psychiatric care. The Covingtons were resolute; they’d been complaining to the state for months and figured the threats would give them more ammunition against the group home.

“We trusted the courts,” Frank Covington says. “We thought they’d see what had gone wrong.”

The Covingtons never got their day in court. On July 13, 2009, they were notified that there had been an ex parte hearing in a Tarrant County courtroom and that, as a result, they were no longer Ceci’s guardians. For nearly two months, the Covingtons were kept away from her — unable to even speak to her on the phone. They frantically studied Texas’ complex probate code and called attorney after attorney trying to find someone to help them. They begged Ceci’s “advocates” — the attorney and guardian the judge had appointed to protect her — to let them see their daughter for one hour a week, and to bring her home for Thanksgiving and Christmas. On these visits, the Covingtons say, Ceci was often so drugged she could hardly stay awake.

Every conversation, every call to the court, added to the Covingtons’ legal bills, which have now surpassed $55,000.
The Covingtons aren’t the only ones fighting this battle. Across North Texas — and Tarrant and Denton counties in particular — families who have lost guardianship rights under similar circumstances have mobilized, reaching out to the media and demanding action from lawmakers. Debby Valdez, a San Antonio mom who runs an organization called GRADE (Guardianship Reform Advocates for the Disabled and Elderly), says the common thread among these cases is that families advocated aggressively for their relatives, and care providers used guardianship removal proceedings to retaliate.

“The bottom line is that constitutional rights are being trampled,” says Valdez, who has an autistic child and fears her own family could face such a nightmare someday. “This decision is made that the guardians suddenly aren’t suitable — they don’t qualify. And families aren’t getting the opportunity to defend themselves.”

Lin Morrisett, associate judge in Tarrant County Probate Court No. 2, says the theory that judges are holding ex parte hearings “willy-nilly” is preposterous. In the last 30 years in his particular court, there have probably been 10 ex parte guardian removals, Morrisett says, including a case in which a guardian starved a ward.

What the families are alleging “is so far removed from reality,” Morrisett says. “It only gets done in cases where people need to be stopped from taking actions that are incredibly dangerous.”

And sometimes, not even then. Garth Corbett, senior attorney with the disability rights watchdog group Advocacy Inc., says ex parte hearings are rare, and that parents almost never lose guardianship unless there’s clear abuse and neglect. It’s much more common for judges to defer to the parent or relative guardian, he says, even when they don’t act in the best interests of the ward. The most common example? Parents who want their disabled children to stay in institutions, Corbett says, when health care and behavioral specialists think they’d be much better off in the community.

“It’s always supposed to be in the best interest of the ward, but the legal guardian can trump almost anything,” says Corbett, who serves on the state board that certifies professional guardians. “Courts are very reluctant to go against the guardian’s wishes.”

Travis County’s Herman says the fact that families say it’s too easy to remove them as guardians, and disability rights advocates say it’s too hard, means it’s probably just right. For years, judges had virtually no recourse to quickly remove abusive guardians, he says, until lawmakers responded in 1993 by writing ex parte hearings into guardianship law. “If the Legislature wants to do away with ex parte hearings, that’s their business,” Herman says. “But it could end up causing economic harm to people, could end up causing physical harm.”

The Covingtons will finally get a hearing on their guardianship removal case next month, more than a year after they first lost custody of Ceci. In a twist, the judge who first removed Ceci from her parents recused himself from the case in July, following several families’ accusations against him at a legislative hearing in Austin.

In the meantime, Frank and Chila take Benadryl to sleep. They cry constantly. They listen to the Rosary in Italian and Latin, praying for a miracle. They compulsively organize and reorganize the thousands of documents they’ve collected to make their case: that their four decades of experience caring for Ceci trumps anyone else’s.

“We don’t go anywhere. We don’t do anything. I have to work as much as I can to try to pay these bills,” Frank Covington says. “We are doing nothing but spending our whole lives with this nightmare.”