A mother's quest for state resources

October 20, 2011

By Aurora Aguilar

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(WBEZ/Aurora Aguilar)
Julian's mother found help through a little-known and hard to obtain solution.

Parents have few options once mentally ill children become unmanageable at home. And there are even fewer choices if families can’t afford intensive therapy. Treatments like the boarding schools called residential care centers can be expensive; but there’s a little known pot of money that can help.

An Individual Care Grant is set aside for mentally ill kids with severe psychosis. The process to obtain this grant from the state of Illinois is involved and time consuming, but the services it pays for can curb violence and aggression. As part of our series Out of the Shadows, WBEZ’s Aurora Aguilar profiled how the ICG helped one family.

Thirteen-year-old Julian is home after a year at an institution for troubled kids. He did well there, except for the food, which he described as, "Horrible…uncooked pasta and overcooked fries!" So since he’s been home, his mom Gloria has been preparing his favorite foods: tostones, arroz con pollo, grilled fish and veggies.

"Shrimp, hot dogs, moycellas which is pig intestine with rice," Julian added to the list. Normal fare for this Puerto Rican household. And for this home, so is using dull-edged plastic utensils. There are no sharp items in this kitchen; Gloria hides her cooking knives. Julian’s favorite foods are behind lock and key. That’s because Julian, who was diagnosed with bipolar disorder, tends to overeat when he’s manic--and the episodes are ugly.

"You know, I’ve, I’ve had moments when I’ve been really scared for my life. I’ve been very concerned," Gloria explained.

At 5 feet, 2 inches tall, Julian is shorter than Gloria; but he seems larger. He’s quiet and shy until he doesn’t get his way. Then, his dark eyebrows furrow and his voice booms. He yells and hits Gloria, who’s a single mother and often the only adult around. When she tries to call for help, the violence escalates.

"The way it comes out, he says I don’t want you to call anyone, I don’t want you to call for help, even if I’m telling him I think we need help. I think he’s embarrassed and angry at himself for not being able to control himself. His bedroom doesn’t have a lock and mine does and so I go into my bedroom and I lock myself there and I’m able to make my phone calls," Gloria said.

Gloria wouldn't go any further when she described what happens when Julian rages. She lowered her eyes, began to cry and silently shook her head.

But, Julian can be loving as well. One night, after Gloria tucked her son into bed, Julian ran back out into the living room, nestled into his mother’s neck and gave her a kiss. 

"Are you ready? Are you ready? Where’s gatita? I love you," she told him.

Not quite the Julian who prompted Gloria to install a buzzer that signals when her son’s bedroom door opens.

"The relationship got strained because of all of the incidents which happened very often. It’s hard to talk about it. But I tend to think. My sister pointed it out, you are reacting like a woman who’s in an abusive relationship. Hardest part is that abuser is son," Gloria remembered.

Julian’s erratic behavior meant that Gloria often had to leave her job as a media executive to pick him up from school. Police paid a few visits to Gloria and Julian’s home on the North Side of Chicago. And once, offered unsolicited advice.

"This lady, a female police officer, who's come here, like three times, the second or third time she told me very casually, 'Ma’am have you thought about giving him up?' And I looked at her like, what? 'Yeah, did you know you can give him up to the state?' And I'm like, I'm not ready to do that," Gloria remembered.

Though Gloria wasn’t ready to give up custody of Julian, she had to give up aspects of her own life. She lost her job; she became a full-time advocate for her son. She tirelessly researched medical guides and law books for tips on protecting people afflicted with mental illness.

Being informed helped Gloria and Julian get some of the resources he needed at school. But it didn’t stop his aggression. Two years ago, Julian was hospitalized nine times in 12 months after he lost control. It was a hospital social worker who told Gloria about a little known resource.

The Illinois Mental Health Collaborative for Access and Choice sent her a hefty packet. Individual Care Grants or ICGs are administered by the State of Illinois’ Department of Human Services Office of Mental Health. The grant application is about a hundred pages thick. It often takes parents months to gather medical records and organize documents. Gloria used an entire kitchen counter in their tiny apartment to sort out the paperwork.

"As you can see there’s a lot of information. This is the checklist for all of the documents that you need to submit, the application form, tax returns, copies of social security card, birth certificate and a psychiatric evaluation…" Gloria said as she paged through the stack. "And here is the tricky part, the child must have a severe mental illness which substantially impairs thought perception of reality, emotional process, judgment, behavior or ability to cope with ordinary demands of several live domains. Must include severely impaired reality testing and may include hallucinations, delusions and avoidance and bizarre behavior or a danger to self or others," she continued.

Julie Carbray is a clinical professor of psychiatry at the University of Illinois in Chicago. She’s helped dozens of people appeal, including Gloria.

"There are almost red flags that help you get funding, aggression, psychosis. Families tell me someone has told them about ICG and I think there’s no way they’ll get the funding. Families who have ADHD and use drugs, those types of kids without more serious impairment would never be able to qualify. If you told it to everyone, you would flood the system," Carbray explained.

At present, only six staff members review and process applications for ICGs. In 2012, the Illinois General Assembly appropriated a total of 23 point 3 million dollars for the program. The average grant is $80,000. But only 25 percent of applicants are approved each year. Gloria believes they were finally approved a year after they first applied, in part, because of her convincing letter.

"My child needs help, in the last 8 months, he has not been able to stay out of the hospital, life at home is unbearable. Doctors have exhausted all options. Every doctor recommends residential," Gloria wrote.

Rice Education Center is in Evanston, Illinois; Keith Polan is the center’s director. The school offers intensive educational and residential services for troubled kids. Most residents are wards of the state and the majority of them are black. The kids at Rice are between nine and 12 years old and stay an average of nearly two years.

"There are a third of our kids, I could have predicted that if I look at their case history, I could have predicted I would have known they would have ended up here," Polan said.

During the day, the most troubled kids attend school on campus. In the evening, the children return back to their dorms to do art projects, take part in group recreational activities and family-style dinners. All staff members are trained in special needs and each staffer is responsible for no more than three kids at a time. This type of intense and specialized care is sought after but it’s expensive; and Polan said only four of the 45 kids at Rice are there because of an ICG.

"The families that we meet, who finally end up with the grant, they are resourceful people. Either they have resources or they scratch and claw to get everything that they need. But they know the system...better than me," he explained.

The families interviewed for the Out of the Shadows series recommended places like Rice because they tend to teach kids how to curb their anger, follow rules and respect others. Still, the therapy provided at residential care centers doesn’t guarantee long-term success.

Julian's clinical psychologist at the center said she thought there was a need for more support from government for resources in the community. And that they could do with more support at Rice but where things are really lacking is when children go home; that there's a lack of support from community.

Gloria and the administrators at Rice struggled to place Julian at an appropriate school after he left Rice in July. Ultimately, his local school placed him in a small classroom with other children with special needs. After a few hiccups, he’s doing well, learning and making friends. She’s renewed the ICG and it’s paying for some after school programs. He’s also picked up archery. Gloria has found work, but it’s in a field far from the career that first brought her to this country. They have their ups and downs.

"As parents, we always want to have everything perfect. We have to examine expectations. What is the future going to bring. Try not to have unrealistic expectations," Gloria said.

Julian and his mom are taking it day by day. And Gloria continues to worry about what the future holds for them.

"When he was much younger, my mantra was, I want him to have as normal a childhood as possible. Now I want him to function in society without getting in trouble. If you think about it, it just scares the bejesus out of me, if we don’t get this under control," Gloria said.

To which, Aguilar asked Gloria what scared her.

"I can’t say it because you know, I don’t even want to because I don’t want to hear myself say it," Gloria struggled. "No, I can’t," she decided.

Gloria doesn’t want Julian to end up being part of the juvenile justice system--or worse. Many experts say juvenile detention is now part of the mental health system in Illinois because it houses so many ill inmates. An estimated 60 percent of boys in the Cook County Juvenile Detention Center have at least one diagnosable mental disorder. But according to studies, Julian does have one thing going for him: the tenacity of his mom.

The names in this story  have been changed to protect their privacy.

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