CHILDREN IN PERIL

Region parents struggle to get help for children with mental illness, disabilities

2012-05-05T14:30:00Z 2012-09-17T13:17:32Z Region parents struggle to get help for children with mental illness, disabilitiesBy Marisa Kwiatkowski marisa.kwiatkowski@nwi.com, (219) 662-5333 nwitimes.com

No one can hear Jennifer Smith's screams.

The South Haven resident keeps them buried — locked behind the facade of a woman who has it all together.

Smith's 11-year-old son, Jacob, screams for her.

Jacob was diagnosed with autism at 2 years old. He throws intense tantrums when he doesn't get his way — urinating in his pants, punching his mom, breaking windows, kicking holes in the walls and destroying his bedroom. Jennifer Smith and her husband, Terry, bought Jacob six beds in six months.

There are good days, Jennifer Smith says, but most feel like the combination of a circus and a pressure cooker.

The Smiths want to place Jacob in a facility where he can thrive under the 24-hour supervision of professionals — people who can manage his rages.

But no one will accept him. In-patient hospital facilities have told the family Jacob's autism is too severe. Most group homes won't accept private health insurance, and multiple state agencies have refused to accept applications for residential placement.

The Smiths said Jacob's behavior therapist told them their only option for state aid would be to allow the Indiana Department of Child Services to come in and substantiate a neglect case against them. DCS officials would remove Jacob from the Smiths' home, and the couple's names would be added to Indiana's child abuse registry — though they later could appeal to get their names removed.

Jennifer Smith said the idea of allowing someone to say she neglected her son is a slap in the face.

"It makes me irate because, basically, I can't help my son," she said. "They're telling me I can't help my son as a parent, and they're not going to help me, either. I feel like I've been painted in a corner with no options available."

The director of the Indiana Department of Child Services says substantiating neglect against parents who are trying to obtain services for their mentally ill or disabled children does happen, but it's a last option after all other efforts fail.

Region parents and mental health officials complain there is a multi-agency failure to provide more intensive services for children with severe mental illnesses or disabilities. They argue state agencies play "hot potato" with children in need by passing them off to other entities.

Indiana child welfare officials told The Times that nearly every state in the country is grappling with the same issue. They say they're doing their best to help children within the constraints of Indiana law.

 

Sharing responsibility

DCS Director James Payne said the problem dates to the 1970s, when the juvenile code was rewritten. The Indiana Legislature didn't spell out in the new code which agency would respond and deliver services.

Payne called it the overhaul's "greatest failure." There have been modifications to the code nearly every year since the 1970s, but none has closed that service loophole, he said.

The result is a tangled network of state agencies sharing responsibility for the Indiana children who need services.

The Bureau of Developmental Disabilities Services, which falls under the Indiana Family and Social Services Administration, provides support and services for adults and children with developmental disabilities, such as autism.

The Division of Mental Health and Addiction, which also falls under the FSSA, works with adults and children who have been diagnosed with a mental health issue or serious emotional disturbance, such as depression, reactive attachment disorder or oppositional defiant disorder.

The Indiana Department of Education also may provide services for children who have "extraordinary needs" affecting their ability to obtain an education. The decision to provide services in those cases does not consider any home or family issues, DOE communications specialist Adam Baker said.

Under some circumstances, Medicaid and DCS also work with families that have children in need of services.

Several mental health officials who work with children with mental illnesses and disabilities say the number of agencies involved makes it too easy for Indiana children to fall through the cracks.

 

'We should be ashamed'

Daniel Carter is a behavior therapist in Merrillville at Innovations in Learning, which provides support for adults and children with disabilities. He said mental health professionals and parents are frustrated by trying to figure out which agency is responsible for placing children in residential facilities.

"It's not working the way it should," Carter said. "Indiana has been ahead of the rest of the country in many areas, but this has been such a mess."

Multiple parents of children with mental illnesses or disabilities who were interviewed by The Times said the Bureau of Developmental Disabilities Services, or BDDS, referred them to the local DCS office, which referred them to the DCS office in Indianapolis — which referred them back to BDDS.

"It's a circle of a bunch of 800 numbers that go nowhere," said Jennifer Smith, who went through the process to get help for her son, Jacob.

Miami County Prosecutor Bruce Embrey, who dealt with child welfare issues when he was a circuit court judge, said Indiana never has had enough mental health services for children.

"If there is any area where we should be terribly ashamed with ourselves in the state of Indiana, it's the way we've dealt with mental health," he said.

Kevin Moore, director of the Division of Mental Health and Addiction, said his agency does the best it can to provide the right services for children with mental illness. He admitted it can be challenging, particularly when a child is diagnosed with a mental illness and a disability. His agency and the BDDS office share responsibility for a child in that situation.

"It's up to us to sit down and work out what's the need, what's the driver here," Moore said.

When other state agencies deny requests to provide the services parents believe their children need, the responsibility can fall to the Indiana Department of Child Services.

 

A fail-safe for treatment?

DCS Director Payne said his agency has become the "fail-safe" for Indiana children in need.

"We're not mental health professionals, but we become all things to all people," he said.

But for DCS to provide services to children with severe mental illnesses or disabilities, Payne said the agency must have legal justification for its involvement in a family's life.

"There has to be a reason for government to take someone's child from them," he said.

Payne said that justification comes by substantiating what is referred to as a child in need of services (CHINS 1) against the child's parents. That law states: "The child's physical or mental condition is seriously impaired or seriously endangered as a result of the parent/guardian/custodian being unable, refusing or neglecting to supply the child with necessary food, clothing, shelter, medical care, education or supervision."

The parents' names would be added to the child abuse registry — though they can appeal afterward to get their names taken off. Payne said he isn't sure how long that process takes.

He acknowledged being on the registry could negatively affect some parents' careers, such as teachers or nurses.

Many parents said the possibility of later exoneration isn't enough to convince them to say they neglected their children in order to obtain state aid.

Brownsburg, Ind., resident Cheri Monroe said her own attorney encouraged her to plead guilty to neglect so DCS would pay for services for Monroe's 16-year-old daughter, Mary Gordon. DCS officials had removed Mary from Monroe's custody in February after Monroe refused to take her daughter home from the hospital while she was threatening suicide.

"I'm not giving up my daughter, and I'm not going to say I'm guilty," Monroe said. "The only thing I'm guilty of is trying to get my daughter help. If I keep silent, she will die. My back is to the wall. My choices are gone."

Indiana law provides an alternate route for parents to receive services for their severely mentally ill or disabled children, but officials said it rarely is used because of other negative consequences.

 

False labels 

There is a portion of Indiana law called CHINS 6, which states: "The child substantially endangers his/her own health or the health of another individual."

Payne said he does not like to use CHINS 6 because it creates an adversarial relationship between the parent and child. Under CHINS 6, the child and parents have separate attorneys, and the child's attorney is legally bound to defend the child's interests. The result likely is that the child will be placed in an institution.

When a juvenile court substantiates CHINS 6, that child's parents are not added to the child abuse registry.

The Indiana Supreme Court does not keep statistics broken down by the types of CHINS cases, but officials told The Times that CHINS 6 has been used only a handful of times in recent history.

Payne said he understands why parents would be opposed to CHINS 1, which would result in their names being placed on the abuse registry. But he said it is the best way for parents to get help under current law.

"We worry about labels more than we do what are the results," he said. "This is a balance. I don't like it all the time."

But even if parents agree to admit to neglect, there still is no guarantee their children will receive residential placement.

 

No guarantees

Crown Point resident Jill Lewin-Boykin's plea for help from DCS recently was denied. She said she was willing to admit neglect in order to place her 12-year-old son, Bryan, in a residential facility. Lewin-Boykin said she could not afford the $200 a day it would cost to put him in a residential facility herself.

Bryan has been diagnosed with bipolar disorder, attention deficit hyperactivity disorder and pervasive developmental disorder, she said. He also is diagnosed as mildly mentally handicapped.

Bryan has tried to burn down his mother's house and shoved his 8-year-old sister down the stairs; Lewin-Boykin said she fears for the safety of her family.

But DCS disagreed. Lewin-Boykin said DCS officials told her they would not substantiate neglect against her because they don't believe Bryan needs to be in a residential facility.

Barbara Layton, executive director of the National Alliance on Mental Illness — Porter County, said Lewin-Boykin is just one example of how poorly the system deals with children with mental illness. Layton's organization advocates for roughly 25 region families who have children with mental illness.

"I think the system is very broken," Layton said. "You have to fight like tooth and nails (to get services). If it was cancer or diabetes, you wouldn't have to go through this. You wouldn't have to jump through all these hoops."

DCS uses CANS — an evidence and research assessment tool — to help determine what level of care children need. Officials say they believe children are better off in the least-restrictive, most family-like environments.

To that end, DCS has significantly reduced the number of children it places in residential facilities. From May 2007 to August 2011, the number of children in residential placement facilities dropped 55 percent, data provided by DCS show.

Payne said some children with severe mental illnesses or disabilities might benefit from at-home counseling, therapy or other services rather than 24-hour care in a residential facility. Each child's need is assessed individually, he said.

 

Dollars and sense

Embrey, a Miami County prosecutor and former judge, said parents never should have to claim neglect to get help for their children.

"It is absolutely ridiculous to take a family trying to get help for their child and require them to admit they are guilty of neglect to get child services," he said. "They're absolutely not guilty of neglect. ... They need help, and we're not giving it to them."

Embrey said it all comes down to money. Mental health treatment is expensive, but worth it, he said. Children who don't receive services they need often end up in the criminal justice system, he said.

Embrey said the Indiana Legislature needs to pass a law designating which agency should be responsible for children in these situations — and it shouldn't be DCS.

State Rep. Shelli VanDenburgh, D-Crown Point, said mental health services for children should be provided by the Family and Social Services Administration.

"The fact that it even makes its way to DCS is shameful," she said.

The Legislature has acknowledged the care of mentally ill or disabled children is an issue worth studying. Earlier this year, it approved the creation of a two-year study commission on under-served youth with mental health issues.

In the meantime, South Haven resident Jennifer Smith continues to wait for a way to get her 11-year-old son, Jacob, into residential placement. She believes it's the best option for his safety and her own.

"I'm not trying to shirk off my parental responsibilities on someone else," she said.

"I'm one person trying to do the job of a facility — a team of people — and it's just not working out very well for him. And it's not working out well for me."

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