Megan Byers started showing signs of mental illness at age 2 with violent temper tantrums. At age 3, she was kicked out of her daycare for frequent explosive outbursts. At age 4, she became abusive to her parents and brothers, and her parents sought professional help for her. By age 10, after seven hospitalizations and several suicide attempts, Megan finally was diagnosed with bipolar disorder.
By then, the Nebraska’s family’s mental health insurance benefits had run out.
“Because we had maxed out, especially the in-patient psychiatric care, when she got into a crisis, the only ‘treatment option’ we had left when she got into a psychiatric crisis was to call the police, whereby they would handcuff her and oftentimes manhandle her pretty badly and drive her to the emergency room,” recalled Leslie Byers, Megan’s mother.
At the emergency room, Megan would be given a shot of the powerful sedative Thorazine to sedate her, leaving her lethargic and groggy the next day.
These episodes were not rare. They happened three to four times a week.
The family knew Megan needed treatment beyond their ability to provide. So they made the heartbreaking decision to relinquish Megan’s custody to the state so she would be given the help she needed. Nebraska’s custody relinquishment process allows parents to temporarily transfer custody of their child to the state when the child has special needs that cannot be met by the parents through no fault of their own.
“We had no other choice, other than the possibility of her ending up in jail or succeeding in a suicide attempt,” says Leslie Byers, of Omaha.
The Byers family knew that the state would become Megan’s legal guardian, and a caseworker would make decisions about her care. But they retained visitations rights and still thought that they would be consulted while Megan received treatment in a residential facility.
They soon found out that nobody viewed them as Megan’s caregivers. “Every interaction with the courts, every interaction with the professionals, when we would speak out on behalf of our child and maybe offer a different idea, the pat response was, ‘You’re not her legal guardian.”
During Megan’s 27 months of treatment, her parents never knew about treatment options or medications until after they were prescribed for Megan. They often didn’t know what medications Megan was taking, which was problematic when they had her out on home visits. But the worst was when the mother couldn’t talk to her daughter.
“I, being the mother, had a need and a desire to talk to my daughter every day. I wanted her every day to hear from me that I loved her, and I wanted to say goodnight to her every night. I remember calling in during the times that the facility had said you could call and was told, ‘Well, she has an early bed because she got in trouble at school.’ And I said, ‘Can I have five minutes?’ And I was told, ‘No.’”
Now in her early 20s, Megan echoed her mother’s sentiments that the care was impersonal and thus less effective.
“They never really got to know me. I was older at the time and they kind of looked at everything as a textbook. They threw medications at me, and the medications made me gain a lot of weight, over 100 pounds in a year.”
Now, Leslie Byers is executive director of the Nebraska Family Support Network, which works to help other families navigate the complex bureaucracies in an attempt to get their children help. She also published a book about her experiences called “Heather’s Rage” in an effort to tell her story but protect Megan’s privacy.
Megan and Leslie Byers have ideas about how the system needs to be changed. First and foremost, they believe children with severe mental illness should be able to get help from the state with voluntary placement arrangements, rather than by relinquishing custody.
“Can you imagine what would happen, what kind of outcry would occur if you had a child with cancer, and in order to get access to services, you had to make them a ward of the state? Why is there no outcry for the parents, such as myself, who had to relinquish custody to get access to care?” says Leslie Byers.
Next, they want a strong bill of rights for families whose children are in the system. This would include input into the child’s treatment as well as a strong grievance process in cases of disagreement between families and treatment providers.
And lastly, they want people to understand their situation. “My parents weren’t bad parents. They weren’t trying to avoid their parenting responsibilities. They were just trying to get me help,” says Megan.
Assistant editors: Beverly Jenkins, 18; Victoria Kreyden, 14.
Y-Press Copyright 2009