It’s a choice no parent should have to make: Cope inadequately with a son or daughter’s ever-worsening mental illness or surrender the child to the state in hopes of assuring the care the child needs.

“A parent should never have to give up custody to get services, but it happens. Believe me, it happens,” said Jane Adams, director at Keys for Networking, a Topeka-based advocacy program for mentally ill children and their parents.

It happened to Leslie and Shane Sharp, a Lawrence couple whose 14-year-old son, Jeremiah, has been in and out of psychiatric care since he was 6 years old.

In February, social workers notified the Sharps that Jeremiah was about to be sent home from an Overland Park psychiatric hospital. But the Sharps said there was no way they could handle Jeremiah’s erratic behavior while caring for their three other children, ages 6, 3 and 17 months.

“We love Jeremiah with all our hearts, but he lives in another world,” Sharp said. “He can’t handle more than one thought at a time. The last time he was here, he dropped the baby because he forgot he was holding her.”

Difficult diagnosis

Because Jeremiah’s illness is so severe, he is eligible for a program administered by Kansas Department of Social and Rehabilitation Services designed to keep children out of state-run hospitals by providing comparable services in the community.

Sharp, a stay-at-home mom, said Jeremiah’s diagnosis had been hard to nail down.

“The latest one is ‘pervasive developmental disorder.’ It’s sort of an umbrella term for autism,” she said. “But I don’t believe it because Jeremiah was never delayed developmentally. He was walking at 10-and-a-half months.”

Jeremiah Sharp, 14, right, paces in the kitchen as his family eats dinner at their Lawrence home. His mother, Leslie Sharp, center, and father gave up custody of Jeremiah in order to give him the mental health services he needs. Leslie fed her family, from left, Joshua, 6, Abby, 17 months, Caleb, 3, and Jeremiah on Wednesday during a state-approved visit at her Lawrence home.

He’s also been diagnosed “schizoaffective disorder,” she said.

“He’s very manic,” she said. “He has these rapid mood swings. He can be laughing and giggling and in just a few seconds be mad and sad and inconsolable.

“And he obsesses on things. If he gets it in his head that he wants a cookie, he’ll ask for a cookie. And if I say ‘No, it’s almost dinnertime,’ he’ll say, ‘But, Mom, I’m hungry.’ He won’t let go. He’ll say it 50 times if he has to — I’m not exaggerating. It’ll go on like that for hours.”

Surrendered custody

The Sharps wanted Jeremiah to remain hospitalized or in a group home and spend weekends and holidays with them. But SRS workers said no.

The only way that could happen, they said, would be if the Sharps gave up custody of Jeremiah.

Sharp said SRS workers gave her less than a day to choose between Jeremiah’s returning home and giving up custody.

“This was at 10 o’clock in the morning,” she said. “They said they needed an answer by the end of the day — and, of course, I’m sitting there bawling. I can’t believe I’m being told to pick which one of my children I love the most.”

Sharp said the workers assured her that if Jeremiah returned home, she and her family would receive all the services they needed. As parents, they would control what happened to Jeremiah.

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If the Sharps chose not to take him back, they said Jeremiah still would receive whatever services he needed to return home, but the Sharps would not be in control.

The Sharps, worried about caring for their other children and confident that Jeremiah would remain in the hospital setting they were convinced he most needed, chose the second option.

“We decided to give up custody,” Sharp said, “because they said they would help Jeremiah and that when he got better he would be able to come back home.”

Now, she said, they regret their decision. And it is not easily undone.

“They put him in foster care — he’s in a foster home in east Lawrence,” she said. “His foster parent is a wonderful woman. I love her, but she has five other children. She can’t provide the structure he needs any more than we can.

“Jeremiah is not getting better; he’s worse. I feel like they lied to us. Now, we have no say in happens, and to see my son, I have to go through all kinds of red tape. I’m treated like I’ve done something wrong, but I I’ve done nothing wrong.”

Difficulties acknowledged

Confidentiality restrictions prohibit SRS officials from commenting on Sharp’s case or even acknowledging whether Jeremiah is in foster care.

But Roberta Sue McKenna, assistant director for legal services at SRS, said the department could not put itself in the position of letting parents decide when their unruly children belong in state-funded group homes or psychiatric units.

And parents who give up custody, she said, are expected to remain involved in their children’s lives.

“We want them at the table,” she said.

Jeremiah, in fact, visits his family twice a week. Each visit lasts about two hours.

McKenna said it was not unusual for parents in the Sharps’ situation to disagree with the recommendations of the assessment team assigned to their child.

“It’s not a science,” she said. “There are going to be differences in opinion and in experiences; there’s an effort made to work through these differences.”

McKenna said SRS was committed to making available whatever services were needed to help children like Jeremiah return home.

Treatment of parents

SRS does not provide these services. Instead, it pays its regional foster-care contractor, KVC Behavioral Health of Olathe, and Bert Nash Community Mental Health Center to provide them.

That doesn’t always happen, Sharp said.

“Bert Nash has been a big help,” Sharp said. “Their services have been good, but it’s not like you get everything you need to make it work. You only get a certain number of hours. There’s a contract that tells how much you get.”

And KVC Behavioral Health, she said, hasn’t helped at all. “They’re a joke,” she said.

Worse, Sharp said she got a form letter Thursday from SRS, letting her know that because Jeremiah was in foster care, she and Shane, a technician at Laird Noller Automotive, were expected to pay the state child support.

“They’ve had him two months, and they say we owe $834,” Sharp said.

Because Jeremiah is in foster care, his visits home must be supervised by at least one nonrelative adult.

“It’s totally stupid,” said Katherine Overfield, a family friend who’s helped oversee the visits. “No one has ever accused Leslie or Shane of abusing their kids, but they’re treated like they’re bad parents and they’re not.”

‘Horrific choices’

It’s unclear how many Kansas families have given up custody of their mentally ill children in hopes of gaining access to better treatment or services.

“That’s not a number we track,” said Mike Deines, public information officer at SRS.

But earlier this year, Gov. Kathleen Sebelius proposed reducing the state’s foster care budget because about 600 children were deemed in the system for unruly behavior, truancy, substance abuse, unsafe housing or a parent’s incarceration. Legislators later rejected the proposal.

SRS records show that almost 900 children are in foster care because of their parents or caretakers’ “inability to cope.”

Karen Ford Manza, executive director at National Alliance for the Mentally Ill-Kansas, suspects many of these children are mentally ill.

Manza spent part of this year’s legislative session lobbying for a bill that would allow parents like the Sharps to maintain custody of their mentally ill children. The bill did not pass.

“This issue is out there,” Manza said. “Legislators are starting to hear about the truly horrific choices that parents are being told to make.”