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The Last Resort

When nothing else works, parents who can't afford mental-health treatment for their children are doing the unthinkable: giving them away.



In the meantime, Joey's parents, Leigh and Brian Menditto, hold their breath and wait for their troubled son to return to the family's two-story home, tucked into a leafy Hanover County subdivision. There he could join his sister, Anna, 19, his brother, Spencer, 13, and the family's spirited retriever named Macy.

Unfortunately, Joey's parents have no control over when he'll be back — and no legal say in the smallest details of his life. Joey is in Virginia's foster-care system.

The system, part of the Virginia Department of Social Services, is designed for children whose parents are abusive or negligent. Joey's parents are neither. So how did Joey become separated from the family that loves him?

The Mendittos make a comfortable living — Brian Menditto manages commercial real estate; Leigh Menditto is a part-time home-care nurse — but they say they just couldn't find a way to pay the exorbitant hospital costs to treat their son's increasingly dire mental health. Their private insurance doesn't cover Joey because his problems are viewed as mental, not medical.

So in January, feeling frustrated and helpless, the Mendittos, to get help for their child, did what few parents could imagine: They gave him up to the state.

When he lived at home, Joey's behavior took a severe toll, physically and emotionally, on the Menditto family. Before he was 2, he slapped at his parents from the crib. As he grew older, he attacked his family and other children without warning.

Joey's sister, Anna, who just finished her freshman year at James Madison University, says that while she was growing up, some of her friends didn't even know she had a second brother. It was just too much to explain.

"People — kids and adults — are afraid of him because he's dangerous, and we're afraid too. But we love him and we're going to be there no matter what," says Leigh Menditto. "And people, you know, I think they mean well, but when you're talking about your child hurting their child, there is no way around that."

Joey's parents worked to get a handle on his behavior. They tried in-home services and placement at private treatment centers during the day. They sought brain scans, homeopathic remedies and advice from experts across the country.

As for drugs, Joey's mom estimates that he's taken more than 20 different medications. None helped him get his behavior under control, she says. Some even made things worse. As a side effect of the drugs he took three years ago, Joey gained about 60 pounds in four months. He grew too large to handle during outbursts. His parents wouldn't risk taking him out of the house.

Everyone involved in Joey's case agreed that his best shot at recovery was to move him into residential treatment at a psychiatric hospital.

The problem was how Joey's parents would pay. Residential programs can cost around $1,000 a day. As for insurance, most private plans cover only a couple of weeks in a residential facility; some cover no time at all. Few families can afford such treatment.

But the Mendittos had learned about a kind of bootleg mental-health-care plan they could pursue. It would be a last resort. But they felt they'd reached it.

Children in foster homes who have mental-health issues like Joey's must be provided treatment services by the state, as mandated by the federal government. The vast majority of money to pay for that treatment comes from one pool of state funds for mental health. Because of the state's obligation to children in foster care, those children get first crack at the state-provided services.

This fact hasn't been lost on desperate parents committed to finding the best help for their children. There's just one catch: Parents would have to relinquish custody of their children and put them into the foster-care system.

Studies show that a large number of families are doing just that.

In 2004, between 23 and 27 percent of children in foster care were admitted voluntarily by parents or guardians — not for placement with another family, but in hopes of obtaining treatment, according to an estimate by the Virginia State Executive Council.

Five years ago the Bazelon Center for Mental Health Law conducted a survey that found the national average of such cases to be in the same range. The federal Government Accountability Office reports that in 2001, parents from the 19 states that responded to a survey had placed a total of 12,700 children into child welfare systems or juvenile justice systems just to get mental-health care.

These are parents who have already gone through the agony of dealing with a child with severe behavioral problems. And as some parents discover, relinquishing custody of their child is a trauma all its own.

"It's still devastating for a parent to say, 'I've got to turn my child over to the state,' even though it's not the parent who's caused that problem," says Dr. Robert Cohen, vice chair of psychiatry at Virginia Commonwealth University.

"Somebody I worked with called it a Sophie's Choice," Cohen says, "because you're damned if you do and damned if you don't."

It's enough to keep some parents from relinquishing custody even as a last resort, which can create dangerous situations when the parent can't get the child necessary treatment, says Trudy Ellis, an activist trying to straighten out the system.

Ellis worked closely with one family who was incensed by the suggestion they give up their son. They opted to keep him at home, even after discovering that he had detailed plans to kill them both and had taken a hammer to the family dog.

"I have to believe we can do better," says Ellis, who narrowly avoided giving up her own son, Matthew, because of a loophole that has since been closed. He too had become violent at a very young age but after spending time at the Virginia Treatment Center for Children is at home doing "phenomenally well," his mother says.

Richard and Cathy Ashe's son, Travis, was a healthy baby. But at 3 years old he was riding in a car with his baby sitter when they got into a serious accident. It left the young boy with brain damage that stunted his development and led to severe behavioral problems.

As Travis got older — and bigger — problems escalated. Travis attacked other people, put his fists through walls and bit himself until he bled. His mom quit her job to stay home with him.

In public, the family endured harsh looks and rude comments. His parents recall that when Travis was around 7, they took him on an outing to the mall, where he threw a fit so intense they had to drag him back to the car. The scene was so chaotic that a mall security guard shadowed them back to the parking lot, stopping them to make sure they weren't kidnapping Travis.

Then one afternoon, when he was 14, Travis attacked his mother in the kitchen. Police found her bleeding from the mouth. She also suffered bruised ribs. The Ashes knew their son couldn't stay in the house, so they decided to give up custody to get him the care he needed.

Travis, now 19, lives in a group home.

The Ashes still question their decision, saying the powerlessness they feel at giving up Travis has tempered any benefits of their separation.

"It's a very hard decision to make, especially after you go through 14 or 15 years of what you've been through," Cathy Ashe says, "… and have somebody tell you you can't take care of him anymore."

The Mendittos say they try to deal with their custody relinquishment of Joey by thinking of it as a cold logistical fact, something that happened just on paper. But the implications of the arrangement constantly lurk in their minds.

"It's just gut-wrenching that you don't have ultimate control," Leigh Menditto says. If the county decided to move Joey to a less expensive facility, even if it were much farther away, she says, it would be within its rights to do so.

"You don't ever know what's going happen," Menditto says, "and we wouldn't have a leg to stand on because we don't have custody."

Cathy Ashe knows the feeling, she says: "It makes you think that everything that you've done is wrong and [the state is] going to have to step in and do the right thing. But it's not the right thing."

Those most intimately involved in the foster-care system emphatically assert that it's not meant for kids like Joey and Travis.

As chief judge of the Richmond Juvenile and Domestic Relations Court, Kim O'Donnell says the vast majority of the youth in her courtroom are put into foster care because they are abused or neglected.

But she's heard of parents trading custody for care and is troubled by the practice. "Parents should lose the ability to make decisions for their kids when they've done something wrong," O'Donnell says.

Parents who place their children into the foster-care system voluntarily must go through hoops to get that custody back. The Mendittos, who are in daily contact with Joey's doctors, will have to pass a criminal background check — a requirement that makes sense for abusive family situations, but seems inappropriate in this situation. Then they must obtain a court order to return Joey to their family.

Losing custody can also complicate matters unrelated to the child's medical state. One grandmother, who asked to remain anonymous, took custody of her daughter's three young children after her daughter died of cancer. The father had been abusive and had mostly stayed out of the picture.

Things went fine between the grandmother and her new charges until the granddaughter turned 16. She was diagnosed with diabetes, which her grandmother's insurance covered. But in the following months her behavior deteriorated. She threw tantrums, sneaked out of the house at night and gave herself the wrong amount of insulin. Eventually, she began cutting herself.

With two other children to care for and a full-time job, the grandmother found it impossible to watch the girl 24 hours a day. After trying everything in her power to avoid relinquishing custody, the grandmother says she finally decided it was the only thing she could do to keep her granddaughter safe.

She worried, however, that the required court proceedings would bring her granddaughter's estranged father back into the picture, because he'd have to appear at a hearing to finalize the relinquishment.

That's how the girl met her father for the first time since she was a baby. "She was in tears. He was stunned. I was stunned," the grandmother says. "It was awful, but it got worse."

The grandmother gave up custody. She was involved but had no rights. Yet the father kept parental standing, and the court allowed him to visit his daughter to take her on outings. She was eventually released from the hospital and moved into a group home.

After she turned 18, the girl decided as a legal adult to live with her father. They were rocky months. During that time, she told her grandmother that her father had been hitting her. She's since moved back in with her grandmother.

The whole experience has changed the grandmother, a mental-health professional who had once counseled parents to go through custody relinquishment in order to obtain services. She says she won't advise people to do it anymore.

In Virginia, insurance companies are required to cover certain mental illnesses, but not all of them. Most companies decide against covering the rest because of the cost.

Fifteen years ago, public money for mental health was divvied up among various state agencies. The departments of Juvenile Justice, Education, Mental Health and Social Services each had their own mental-health budget and a different menu of what they could offer a child in need. The arrangement made things difficult for children with problems that were handled by more than one agency.

For example, a child in special education might also have emotional problems. The child might need supervision during the gap of time after school lets out and before the parents come home. Getting such services would be complicated because the Department of Education had to coordinate with the Department of Mental Health.

To streamline things, the Virginia Legislature passed the Comprehensive Services Act in 1992. Under the act, many funds were grouped into one pot, making the money more flexible. The hope was that case workers could offer tailor-made programs to meet the needs of a child, rather than squeeze him or her into a ready-made state program. The case manager could build in services from more than one agency, such as sending the child to a day program or hiring a specially trained tutor until dinner.

The new law was heralded as an innovative funding plan, but when all those revenue streams were pooled together, a major obstacle emerged: Because federal law mandated mental-health services for children in foster care, those children remained first in line for funding. That created a challenge, some observers say, in providing services for children who weren't in the state's care.

Parents quickly found out that they could relinquish custody of their children to move them to the front of the funding line.

Outside of Medicaid, Virginia has made $253 million available in the coming state budget for mental health, says Dr. Brian Meyer, executive director of the Virginia Treatment Center for Children and chairman of the panel responsible for making recommendations to the Legislature about state aid for children's mental health.

He says that "95 percent of those dollars go to kids in foster care" or those children who are in special-education programs and who also require residential services. The arrangement doesn't leave much left for kids outside of foster care.

Delegate Bill Fralin, R-Roanoke, has introduced bills for the past three years that would have helped families like the Ashes and Mendittos get help without relinquishing custody. None has passed. The potential cost to state and local governments — most recently estimated at $3 million for 100 additional children — always gets in the way.

There's no way to determine how many families would take up the state's offer to help with mental-health services if parents no longer went through custody relinquishment. "They can tell you how many people have given up custody," Fralin says. "What they can't tell you is how many people have refused to give up custody — and that number scares them."

The speaker of the House just appointed Fralin to a new legislative committee tasked with reviewing the Comprehensive Services Act. It's expected to report back to the Legislature in 2008.

In the meantime, Fralin is waiting for a response from the Office of the Attorney General on a question he submitted in December. According to state law, the Department of Social Services can take custody of children who have been abused or neglected. It's also authorized to pay for services or treatments that would prevent putting children from safe homes into foster care. Fralin has asked the attorney general whether cases like those of the Ashes and the Mendittos would qualify for funding under the agency's mission of prevention.

As for the Mendittos, things are coming along with Joey. At Cumberland Hospital the staff monitors him closely. He's lost about 40 pounds, and things have mellowed at home some. But even those pluses have come at a great cost, his parents say.

What's complicates matters is that few people understand the situation and such issues of mental health. "It's acceptable to raise money if your kid has cancer," Leigh Menditto says. "It's not acceptable to raise money if your kid hits people."

The observation echoes other families' observations, that mental health is a serious medical problem — it's just not funded like one.

"People keep focusing on the custody relinquishment, but it all happens because there aren't sufficient funds and services available for those kids, so we end up borrowing" from other programs, VCU's Cohen says.

He and other mental health professionals say more money needs to be available for children not in foster care, to prevent such situations where expensive residential treatment is their only option.

The basic problem is that Virginia fails to provide a "continuum of care," says Meyer from the Virginia Treatment Center for Children. It's as if the state has mental-health equivalents of first-aid kits and hospice care, he says, but no clinics or outpatient treatment.

"We have what we would call low-end services: therapy and medication," Meyer says. "We also have high-end services, which are residential services, group homes, acute in-patient care" — but there's nothing in between. Intermediary services for mental health would include such programs as day treatment, a child psychologist on staff at school or specialized after-school and in-home programs.

The children's mental-health community may have missed a big chance for funds this year. When Gov. Mark Warner left office, he asked the Legislature to devote a chunk of the budget surplus to mental health.

In December Warner announced a huge investment, $460 million, but most of that money went to bricks-and-mortar renovations for four adult facilities. Only about 10 percent of the new mental-health money went to children's services, and most of that is going to services for children with mental retardation.

By all accounts, 2006 was a banner year for mental-health funding from the state, and mental-health advocates worry the Legislature will move on to other issues, figuring they've spent enough on the problem for a while.

People who deal with these issues every day fight the perception that children's mental health affects only a few families with severe problems.

Judge O'Donnell says that when it comes to mental-health funding, "the health of our community is at stake. When these kids are not receiving help for the mental health issues they have, the effects of their mental illness just spill out onto everything. It affects their school performance, their behavior at home and in the community. Some end up in the juvenile justice system, and it's because we weren't able to provide the help they needed."

Mary Dunne Stewart is the policy director for Voices for Virginia's Children, a child advocacy group. She says that although she works to raise awareness about children's mental health, she sees it as an issue reaching further than the average special interest. The children who go untreated turn up again in the courtrooms of Judge O'Donnell's colleagues, asking for adult services or even being tried as criminals.

"If we put more funding into the children's mental-health system, if we can diagnose and work with them when they're children and they're younger, then you can avoid criminal justice costs and other more severe costs when they're older," Stewart says. "You pay now or you pay later." S

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