Health

Saturday, Dec 22 2012 10:00 PM

LOIS HENRY: Two cases show barriers to mental health care

BY LOIS HENRY Californian columnist lhenry@bakersfield.com

It's great that everyone wants to talk about mental illness now, in the wake of the Newtown massacre.

The mantra is to get mental illness out in the open, remove the stigma and deal with it for what it is, a health issue. The state of California is even launching a social media ad campaign urging families to seek services early.

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Lois Henry hosts Californian Radio every Wednesday on KERN 1180 AM from 9 to 10 a.m. You can get your two cents in by calling 842-KERN.

That's all good and I applaud those efforts.

But it is not nearly enough. We need large, bold, practical changes.

That includes making insurance cover mental illness as a real health issue and not in the dribs and drabs it currently does. And it includes making sure people really can access the services that agencies claim are available, rather than creating insurmountable barriers because of the costs.

Some of that would need to be done at the federal level.

But there's work that can and must be done locally with help from state officials. Our board of supervisors must do a top to bottom review of what services are available locally and how they are, and aren't, made available to families.

I'm hoping someone on the new board steps up to the challenge and listens to families dealing with mental illness.

The stories aren't pretty. But these families have a lot of boots-on-the-ground wisdom to share. They must be heard.

And, no, I doubt very seriously they would agree with Senate President Pro Tem Darrel Steinberg's assessment of California's mental health services as a model for the country. Steinberg this week sent a letter urging Vice President Joe Biden to consider California's experience as Biden seeks ways to increase mental health resources and reduce violence on a national scale.

Biden, and Steinberg for that matter, ought to do a lot more research before declaring "mission accomplished" in California's world of mental health.

I spoke extensively with two families that both have adopted 12-year-old boys who are severely mentally ill. Both boys are angry, suicidal and, at times, homicidal.

Both families can tell you chapter and verse exactly how few options kids like that have in Kern County.

***

Abbey and her husband raised four of their own children before deciding to adopt Zeke through a public agency. (I'm changing the names to protect the children's identities and also because both families feared retribution by the very agencies they are asking for help.)

His early months were harsh and by the time they got their boy at 6 months, he was skinny, hollow eyed and never smiled. By the time he was 4 years old, they knew something was terribly wrong with his unnatural, angry, screaming tantrums.

Because Zeke was adopted through a public agency, he supposedly had access to more services than most. Abbey got him into counseling. She and her husband took parent training and they even had in-home therapy services through the Department of Mental Health.

"They always act like it's the parents' fault. But this kid is mentally ill. No one wants to admit that and it's frustrating because we love our son. He didn't ask to be born like this," Abbey said. "He needs help."

Nothing worked. Zeke threatened his parents, his siblings, the animals. He hit them and destroyed furniture. He burned a toad with chlorine tablets from the pool and skewered another, Abbey said.

He tried to burn the house down and once threw an extension cord over the pool fence while a baby sitter and his sister were in the water. The cord landed a few inches shy of the edge.

Family members had to sleep with their doors locked and a monitor on Zeke's door.

She finally heard about "wrap around services" through Mental Health, but said she had to fight for that even though Zeke should have automatically qualified. Wrap around services put workers in your home on a regular basis, providing a child partner and parent partner, stepping in if police have to be called or hospitalization is necessary.

"Some people don't like it because it can be so intrusive," Abbey said. "But we didn't care. We needed help and we had nothing to hide."

Eventually, Abbey realized Zeke needed a 24/7 facility where he could get structure, therapy and constant monitoring. But even with all the contact he'd had with the Department of Mental Health, they would not recommend an out-of-home placement.

"They have a standing policy against out-of-home placements," Abbey told me.

That's not exactly true, said Mental Health Director Jim Waterman.

Group home environments aren't always the best option, he said, and so, in practice, the department will do everything possible to provide services that keep the child at home.

No, Abbey said. It's the money. They don't want to get stuck with the cost, which can be more than $100,000 a year for one child.

Abbey had homeschooled all her children but put Zeke in Norris School District in September 2011 in hopes of getting him into the Kern County Superintendent of Schools' intensive and more restrictive program for emotionally and mentally disturbed children, called Aurora.

A child has to be recommended by their home district through a process known as an IEP, individual education program.

Every disabled child must have an IEP in order to get extra services.

Zeke had no learning disabilities, however, and was able to maintain a good demeanor in front of teachers. He didn't qualify.

Finally, she and her husband sought help from the Department of Human Services and had him removed from the home. It wasn't without consequences.

They had to agree to an allegation of child abuse for the department to take him. (That's another law that needs to be fixed.) It was a long, hellish process, but Zeke is now in an out-of-county facility and seems to be doing OK.

"But we had to take the fall for it," Abbey said. And, yes, it's part of their record now, meaning neither can ever work with children.

The placement is only for 18 months and Abbey said the family has no idea what they'll do after that.

***

What happened to Abbey's family stopped Jenny and her husband, Tim, in their tracks. They had considered the same route of asking Human Services for help with their son, Will. Tim is a teacher, though and can't have a child abuse charge on his record.

With that option closed off, and few others remaining, they are trying to work with Rosedale Union School District, where Will attends middle school, to get him into Aurora, which they hope will lead to an out-of-home placement.

"He terrifies both of us," Jenny said matter of factly. "He's dangerous. Since he was quite young he's been telling us he's going to kill us all."

He routinely tells them he hates them, that he wants to hurt them, that he wants to kill himself, or bash in the heads of school mates.

He's chased his siblings with a knife and tried to hit his mom over the head with a steel rake. His outbursts at home are so frequent, the family has an "evacuation" plan so Will's siblings, all younger, are kept out of harm's way.

They, too, did everything they could.

He's been in therapy since age 8. They've done parent training, behavioral charts, testing, family counseling. He's been hospitalized and on numerous rounds of different medications.

Will doesn't have as many options as Zeke because he was adopted privately, so Jenny is concentrating her efforts on the school district.

By law, schools must provide a free, comparable education to every student regardless of disability. Jenny believes that will only happen in an out-of-home placement, which would have to be paid for by the district.

But the district is dragging its feet, she said.

It is providing a bit of help here and there, a therapist twice a week and 45 minutes of extra special-ed time.

Tom Ewing, director of pupil services at Rosedale Union, didn't know the details of Will's case but said it would be unethical and illegal not to put him in placement if teachers and counselors felt it was necessary.

But such placements are very rare and the district has many other options available to parents.

In fact, to his knowledge, the district has only had one such placement. It was for a child who was transferred to Rosedale already in placement.

Part of the issue is if the school isn't seeing behavior problems, then it's only allowed to intervene on the academic side of the equation, Ewing told me.

Behavior issues could just be parental perception, he said.

In fact, Will doesn't act out at school, Jenny said. Though last year he did tell a teacher he was having "bad thoughts" and wanted to hurt people.

Even so, Jenny has reported all his threats and behavioral issues and provided documentation of his hospitalizations, police contacts and work ups done by private psychiatrists they've hired over the years.

I read memos to the school district from three of Will's psychiatrists. They all say essentially the same thing about Will's behavior, but one UCLA doctor boiled it down to words that should have set off alarms all over Rosedale:

"This child is a walking time bomb," the doctor wrote in Sept. 2011.

He added that Will's social skills were negligible, he was internally angry and "mind blind," meaning he doesn't have the capacity to understand that his behavior is wrong. That doctor also refused to continue treating Will, saying he was a liability.

I asked Ewing if such a note would trigger notice by the school and he, again, said that could just be one doctor's perception. Actually, it was three doctors, but moving on.

I also wondered how the school could separate Will's mental issues from his school performance considering he's been hospitalized several times just this past semester for up to 10 days at a time. He was pulling straight "Fs" as of Wednesday when Jenny looked them up online.

So many absences would tend to affect a student's grades, I said. Since those absences were a direct result of his mental illness and the school is legally obligated to overcome a student's disabilities in order to provide a comparable education, wouldn't that mean the district has to acknowledge and deal with Will's mental problems? Not just his schoolwork?

Apparently not.

At a meeting on Thursday with Will's teachers and counselors, Jenny and Tim were told that the grades posted online were just "guidelines" not actual grades. One teacher even said she'd decided to give him a C based on one test he had passed.

At that meeting, Will was promised a smidge more services. But Aurora and out-of-home placement are still way off the table.

Being the cynic I am, I had to wonder if my call to the district had any influence on that meeting, which the district also had an attorney attend out of the blue.

Hmmm.

Philosophically, having the district foot the bill for Jenny's child may seem like an unreasonable demand. Why should you or I pay for her kid, after all?

Neither Jenny nor Abbey much liked the idea either.

But as they both pointed out, society is going to pay one way or another. If these kids are ignored now, it's all but certain they will commit a crime, large or small, sometime in the future.

And the justice system isn't cheap. Not to mention the possible harm to innocent victims.

Even at their young ages, Will and Zeke have had police called by their families when they've been totally out of control. Law enforcement can do little, though, until a crime is committed.

In fact, both women have been told their children would get much, much more help if the boyes ended up in Juvenile Hall.

That alone points to the desperate need for our leaders to engage and change the system.

If there were a way to keep the boys home and provide the care they need, both women would jump at the chance, they said. But they simply don't have that option and they're running out of time.

"I love my son and I spend every day trying to help him. But he is frightening," Jenny said.

Opinions expressed in this column are those of Lois Henry, not The Bakersfield Californian. Her column appears Wednesdays and Sundays. Comment at http://www.bakersfield.com, call her at 395-7373 or e-mail lhenry@bakersfield.com

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