When the only hope is to outlive a child

By JACQUIELYNN FLOYD Special to The Eagle

Apr 16, 2018

To most of us, it’s unthinkable that a loving parent might wish — might pray — to outlive a cherished son or daughter.

It’s horrifying to imagine a parent making sure of it by murdering that child.

No motive has been made clear, and none may ever be, to explain why a former Lucas City Council member strangled his disabled adult daughter last week before taking his own life.

But the tragedy fits a pattern familiar to aging parents who have devoted their lives to caring for a profoundly disabled child — and who view the future with growing fear.

“They all say the same thing: They hope their child will die before them,” said Laura Warren, executive director of Texas Parent to Parent, a nonprofit that advocates for families with disabled kids of all ages. “That’s just not realistic.”

On April 8, 58-year-old Donald Zriny strangled his 26-year-old daughter, Amanda, and then hanged himself in the family’s semi-rural Collin County home.

Acquaintances say Zriny, who served on the Lucas City Council — Lucas is just northeast of Plano — from 2005 to 2012, was the main caretaker for Amanda, who was born with severe disabilities. She was unable to walk, speak, read or write, and was entirely dependent on her parents, according to court records.

Zriny’s wife, Amanda’s mother, discovered the bodies and frantically called police. She has since declined to comment; a woman who answered the phone at the family residence hung up when I called.

What could you say about such a nightmare? That no one possibly can understand? That fear and despair can push a decent and loving person over a cliff?

“It probably happens more than you think,” said Parent to Parent’s Warren, herself the mother of an adult son with disabilities.

Decades after the routine practice of permanent institutionalization for developmentally and intellectually disabled children first was challenged and then largely phased out, we still do a piecemeal job providing services to kids with disabilities.

But some parents are distraught to find that those piecemeal services get much more scarce when those children “age out” of the state mandate to provide educational services — usually at 18 or 21, Warren said.

“It’s like falling into a black hole,” Warren said. “(Your child) leaves high school, you’re in a world that doesn’t make sense. The services and the help are gone.”

The group Warren heads works to make connections between families of disabled children, decreasing the isolation they too often experience.

There are other services available, but they can be scarce and hard to find. And the waiting lists can last for years.

“Texas has to be one of the worst states for public funding for this,” Warren said. Surprise.

But there are tragedies borne of private desperation elsewhere, too. One prominent case involved a Chicago-area woman named Bonnie Liltz who killed her severely disabled 28-year-old daughter, Courtney, in 2015.

Frightened that her own recurring cancer would leave her unable to care for her daughter, Liltz killed Courtney with a lethal overdose of medication through her feeding tube. The two had lived alone for years in a small apartment, where they slept on twin beds in the same room so Liltz could always be at her daughter’s side.

A judge sentenced Liltz to four years in prison, even though prosecutors themselves recommended probation. Last year, while free pending an appeal, Liltz took her own life.

“(F)ar too many families with a member with a disability are not prepared for the future, or are frightened by what the future may look like,” wrote Peter Berns, CEO of Arc of the United States, an advocacy group for Americans with intellectual challenges.

 

That fear, that relentless anxiety, is reflected in online message boards for families of disabled adults: “We worry about the future.” “I don’t know what I’m going to do.” “My parents have done nothing to set things up for my brother’s care.”

We all want to believe that in this more enlightened post-institutional era, developmentally and intellectually disabled Americans are contented and accepted members of their own communities.

We want to think that with a quick internet search or a phone call, the support services they and their families need can be accessed easily.

Usually, that is a fantasy. Families describe full-time struggles with government agencies, a chronic lack of respite care, scarce availability of in-care assistance.

“The need for competent help is daunting,” said the Philadelphia Inquirer in a compelling series on this issue published late last year.

In Florida, where a large elderly population means more aging caretakers, families are desperate: “We hear again and again, ‘I am in my 80s and (the child) is in their 60s,” said Rich LaBelle, a family advocate. They only solution they see, he said, is this: “‘All I can hope is they pass away before I do.’”

Think about it: These are parents who have provided decades of daily care for children who will never be able to live on their own. And the best they can hope for is to outlive those children, to see them die.

If that’s the best hope they have, then shame on us all.

Jacquielynn Floyd writes for The Dallas Morning News.

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