Freelance Writer
The Outsiders
07.08.14 | No Comments

Isolated, detached and misunderstood, kids once marginalized get the help they need. And Worcester is setting the example.

Ricky Simone can relate to Columbine. Not that he would ever do something so drastic, but let’s just say he’s “been there.”

He’s one of the Worcester kids that could have easily gotten lost in the system, a statewide system that critics say is terribly flawed, but one that advocates (and those very critics) maintain is not only better than most, but on the way to being fixed.

From a young age, Simone knew he was depressed. He didn’t know why, but he’d think about hurting himself or other people. He admittedly fails to see the gray areas in life; with him, things are black or white. He’ll be laughing and inside he’ll feel fat and ugly. It’s hard to know why a kid will become this way. It could be environment, or it could be genetics — or a combination.

Simone’s dad left his mother because “she did too much drugs and would come home high all the time.” She was gone from his life when he was about four. Since then, he’s lived at home with his dad and older brother and sister. For a long time, Simone thought he was bipolar, but was eventually diagnosed with post-traumatic stress.

“When they explained it to me,” he says, “I was like, ‘Ohhh.’ It’s when you get panic attacks from something that reminds you of a traumatic past experience. Sometimes if people yell or raise their hands, it’ll become like that for me. Or if they say something, it’ll trigger something for me and I will get suicidal because I cannot really control it. This is a reaction to the beatings from babysitters and kids in school.”

By the time he was nine years old, Simone was made fun of to the point that he says he’d have visions of leaping from the third floor. Kids can be cruel, and Simone, in their eyes, was different — a target.

“I was born with a cleft palate,” says Simone. “My nose is crooked. I had really bad teeth when I was younger. They were crooked. I had braces, which I got made fun of for. Just everything. I was also really small back then. I was very small and skinny, so with kids, I got the worst. After my mom left, things went downhill from there and it just ended at the point where, when I was in the 10th grade, I just snapped. I couldn’t get out of it.”

He gets aggressive sometimes when he’s in panic mode, but has little recollection when it happens.

“That’s why I have had to be put on medications and restrained and put into programs and hospitals,” he says. “Sometimes I know why I am panicking. One time, I threw a hacky sack to my brother and he was going to throw it back and said ‘Let me hit you where I want to hit you,’ and that just made me react and I started crying. People yelling constantly will make me go into one of those panic states. Teachers yell, too — even the ones who are supposed to deal with issues yell at me. One slammed on the desk and I had to actually leave the school. If I stayed in the school, I was going to cut my wrists open. I go through suicidal feelings. They don’t go away. It’s something you need to work on and work with and try to overcome when they occur. It’s not something that is just going to go away. It’s not like a cold.”

It isn’t like a cold, no, but those affected by a child’s mental illness are trying to squash not only the stigma that surrounds it, but also push for programs, laws and initiatives that treat the illness as if it were like diabetes.

The kids who are struggling

Though the children were chatty and upbeat at the Children’s Friend offices (where they meet for various groups), it isn’t indicative of how they are outside of these walls. But here, they find solace.

At school, a lot of these kids didn’t really talk — and still don’t — not to other students, not to teachers and not to their parents. Or they acted out in bizarre ways. Some of them landed in hospitals, juvenile court or foster care. That was both the result, and a contribution to their condition.

Chris White, who’s 16, has been going there since he was 13, and today is gearing up to give a speech at the mayor’s proclamation. And he’s led this talk for years, as well as at other presentations that advocate for children struggling with mental health issues. He, like Ricky Simone, is in a group called OTHERS (Other Teens Help Everybody Respect Self), which sits under the PAL umbrella. Open to teens 13-21, it’s a group that gets together both for fun and to give a youth’s voice to promoting anti-stigma campaigns and other initiatives relating to children’s mental health.

“They already feel different as it is,” says Jannelle Correa, youth director of PAL. “They feel like people don’t include them in a lot of things because they are different. ”

Remarkably well-spoken, outgoing and bright, White first came to OTHERS because of his half-sister Ashley, who was one of the original members.

“When my sister was in OTHERS, they went to Washington, D.C., for a national mental health conference,” says White. “They are presenting public service announcements. I went and saw what it was about and wanted to join.” Ashley Prew (right) and friends at the Children’s Friend House participating in the OTHERS program.

White has been diagnosed with a mood disorder, depression and ODD (oppositional defiant disorder), and has a “lot of behavior problems in school.” He also struggles with a learning disability due to hemispheric brain damage that happened when he was very young. The clues started as far back as preschool, where he’d throw things, launch into temper tantrums and not listen to teachers.

In therapy since he was five, White lives at home with his grandmother, and has since he was three, when DSS took him. Both of his parents were drug addicts and also had mental health issues, so he just couldn’t live with them, he says.

“I would be dead if I didn’t live with my grandmother,” says White. “It was a really dangerous situation. I never got any food, never was taken care of. They were both heroin addicts. They have gotten help. They have both been to prison and rehab. My dad was in prison for the majority of my life. And my mom has been in prison on and off.”

Because of his behavior issues, including pronounced anger issues, White was shuffled through 13 different schools. White complains a lot about how his needs were not met, or even noticed, from a very young age, and says he was picked on.

Frustrated by ignoring his demands, he feels bitter toward the public school system.

“In the beginning, I don’t think they dealt with me adequately,” says White. “I don’t think they understood how to best treat my needs. The schools weren’t following my accommodations. They had me in a class with learning disabilities. I have a learning disability, but it doesn’t affect my ability to do work. It affects my ability to learn. I actually passed the MCAS and I have good grades. But they had me in a class with kids that were really low-functioning, so I didn’t learn anything for like two years. I was with kids who had dyslexia, but I read at a very high level. I was made fun of all the time for being in that class.”

Now, White is at Central Mass. Academy and is “doing well.” Since his initial diagnoses, he’s been labeled with ODD, which is an inability to control his impulses appropriately.

“If someone tells me what to do, I want to do the opposite most of the time,” he says. Because of medication and getting into the right school, White is improving and plans on heading to college.

Ashley Prew, who turned 16 this month, initially came to OTHERS to support her friend. Now, she continues to attend, and her friend rarely goes. Labeled as being bipolar, having depression and being short-tempered by her psychiatrist, she hasn’t started taking medication yet.

Since her mom passed away unexpectedly in 2004, she says she’s been angry. Her mom had been off drugs for a good two years, but died of heart failure.

“It was really hard,” says Prew. “My grandmother signed me up for counseling. I live with my grandmother. I have a dad, but he left when I was, like, seven. I’ve been with my grandmother on and off my whole life.”

Her grandmother, she says, knew she needed help the day she punched a wall and ran away. Yeah, she ran to her friend’s house and went swimming, but we all know how that goes. Quiet in school, but prone to irrational outbursts, Prew is looking forward to getting on the right medication. And for her, OTHERS is an oasis.

“It’s just a place to see people that have, like, the same problems,” she says. “Just seeing how they deal with problems helps you deal with them.”

“Mario,” 17, also benefited when he found OTHERS. A big fan of bands like Tool and The Red Hot Chili Peppers, Mario plays the bass and hopes to someday play as well as his idol, Flea. At night, he’ll play with his band, and by day, he wants to be a marine biologist, as he loves being near the water. Right now, he does landscaping, goes to school, and is into sports. He’s popular in school, too. He’s got a stage name picked out, for when he’s famous: “Fro Boy.”

But there was a time he wouldn’t have spoken so positively. There was a time when he would steal cars, and he dabbled in drugs. Since the age of five, he’s been in and out of foster care. He landed in the hospital once, too, but doesn’t elaborate. “It’s hard for me to find structure,” says Mario, who has been diagnosed with a mood disorder. “I have to work a lot. I also have anger issues. I was on medication, but got off it because I was doing good and I’m doing good now.”

Heading out the door to attend the proclamation, we have to quickly ask about those cars: “No, I would never steal a car now,” he laughs.

Many argue that it is a crisis, as Dr. Douglas Ziedonis, professor and chairman of the Department of Psychiatry at the University of Massachusetts Medical School, stated at a recent Children’s Mental Health Regional Forum. At the forum, it was reported that approximately 100,000 children in the Bay State are lacking the appropriate mental health care. There is a disconnect, they say, between the court system, the health system and the school system — as well as insufficient funds and systems in place to connect the school, the doctor and the court to the child.

Epicenter for mental health

On Tuesday, May 6, the offices at the Children’s Friend building on Cedar Street were hopping. Later that evening, the mayor was to declare Children’s Mental Health Month in Worcester for the eighth year. Worcester is the only city that recognizes the entire month, as opposed to the week that most mark. OTHERS gather at the Children’s Friend House in celebration of Children’s Mental Health Month.

Excited kids of all ages swarmed, eating pizza and ice cream sundaes and getting ready for the proclamation that kicks off an important month for them. For Worcester, this building is the epicenter for children and their families struggling with mental illness. It’s the home of the Worcester chapter of the Parent/Professional Advocacy League (PAL).

The chapter doesn’t only serve as an organizing arm for mental health advocacy; it is also part of an important model for the country because of its success. Worcester, it seems, has its act together.

“Worcester is definitely a leader,” says Meri Viano, who is a family support specialist working with PAL. She also has two children suffering with mental health and behavioral issues. “It’s a leader because it’s organized. We know how to collaborate and there is a level of respect for families.”

Rina Cavallini started the Worcester chapter of PAL five years ago, and her input is a crucial piece to this very model and movement. It started in earnest eight years ago, when Cavallini joined a group of parents and providers to drastically change the way children with mental health problems were dealt with. Together, this concerned group nabbed a $7 million dollar federal Substance Abuse and Mental Health Services Administration grant to assist entire families affected by children with serious emotional disabilities.

The group had momentum and a focus. So along with the UMass Medical School, it established Worcester Communities of Care to properly use the money, which broke down into about $100,000 a year.

The group put families in touch with other advocates to assist them with issues such as understanding the school system. While involved with Communities of Care, Cavallini was hired at Community Healthlink to come up with a creative way to handle the funding and provide children and their families with “wraparound” services. Worcester has become innovative in its approach.

“Central Massachusetts has some standing models,” says Ziedonis. “In fact, this is the model of the country on wraparound services.” The wraparound approach recognizes that children with mental illness or emotional disturbances have a unique need for integrated and distinct services.

“It is a proven theory that when families are better able to deal with stress, children have better clinical outcomes,” said the press release announcing the federal grant. “For example, the entire family of a child with severe emotional disturbances who soils himself will be better able to cope with the disorder’s challenges if a treatment program can offer them financial assistance to purchase a washing machine so they don’t need to go to the Laundromat every day.”

Dr. Peter Metz agrees. Metz is the director of the Child and Adolescent Psychiatry Department at UMass Medical School and UMass Memorial Medical Center, and is a principal investigator. Metz says Worcester is easily a leader in the state, marked by the advantage of having those two successive six-year large federal grants. The first, he says, targeted children at risk of out-of-home placement, and the present one focuses heavily on diverting those with serious issues from the juvenile justice system.

“We had the attitude of being strength-based,” says Cavallini. “Let’s not look at the family and say what is wrong with the kid. Let’s talk about what is right with the family. You have no idea what a huge shift of thinking that was, especially to people like us who already felt so much shame. Parents were so beat up by the old way.” Suzanne Hannigan, project director for Communities of Care.

The “old way,” she says, lacked cohesiveness between schools, parents, providers and the kids. The rest of the state started to look at Communities of Care as a model of a “program that was actually working.”

“Families all over Central Massachusetts started coming to family support night,” says Cavallini. Five years ago, Cavallini was given money to start the Worcester chapter of PAL after Community Healthlink saw the strong united family movement that was growing in Worcester.

Renting a space at Children’s Friend, Cavallini was the director, and formed a steering committee of parents.

“We continued a lot of what we had been doing,” she says, “but the beauty was there was this autonomous family movement. It wasn’t connected to Community Healthlink anymore. It was bigger.”

Not only did the grant give Worcester federal recognition, but the landmark decision in the Rosie D. v. Romney case in 2006 helped validate the need for better mental health support as well. It found that the state was violating the federal Medicaid Act by failing to provide home-based mental health services to around 15,000 children. The decision drastically shifted, at least in its thinking, the way the state deals with mental health issues. Jannelle Correa, youth director for PAL, the Parent and Professional Advocacy League.

Cavallini passed the torch to newest director Cindy Cefaitis last year. Cavallini, who has a son who is bipolar, says she’ll continue to work in the field in some capacity.

“Other grant sites have actually used this model,” says Suzanne Hannigan, project director of the Central Massachusetts Communities of Care. “The effect it’s having is that the Department of Mental Health is talking to other sites about them doing the same thing. Parents are starting to get a voice in decision-making in state agencies and guiding public policy and procedure. They’re realizing it’s an important voice.”

Building on the Rosie D. case, Hannigan talks about the new legislation, called the Children’s Behavior Health Initiative, which would bring about many changes in the state’s system. More and more agencies, such as Children’s Hospital, are signing on to the legislation, which argues that screening should be routine in the schools and that private insurance providers must be required to play their part in addressing the crisis.

You’d need a degree in legislative deciphering to understand how this initiative works, who facilitates it, and how it intertwines with services and organizations that are already in place. Basically speaking, Metz says, it’ll provide an array of clinical services that are not currently available to children. Only children, that is, covered by MassHealth.

Still, Ziedonis warns that where other states have failed is when a decree such as the Rosie D case goes away, if legislation isn’t in place to support it, the resources fade away. “That is why people are speaking out so strongly,” he says. “It’s good that we have the initiative, but we want to make sure there is more of a guarantee that this will happen.”

The initiative’s effects will be gradual. The plan is to issue a request for responses from providers by June, and after an extensive bid process, announce contracts by Sept. 1, with the services up and running by April 1, 2009. This would only affect MassHealth children and their families, which roughly involves 7,000 to 12,000 eligible recipients.

“There is an awful amount of concern,” says Metz. “We know that there are many with private insurance who need a similar kind of approach. At the moment, they are not in this. There is certainly interest on many people’s parts that as this gets started, private companies are pressured, but this is a start.”

More resources needed

It’s what Simone and a lot of kids say would have helped them. He gets agitated when talking about school, arguing that they did little to stop the teasing he endured.

He harbors resentment toward the way his life was handled. He felt alone and largely ignored in terms of his special needs by the Worcester Public School system. Although he’s the funny guy in school now, he laments over being the odd man before, and how that stigma shattered his well-being.

“When I was young,” he says. “Nobody asked me questions that I thought were relevant. ‘How do you feel in school today, Ricky?’ Nobody asked me that. The schools fall short. They should make it where, when you go in for a checkup with your child, they should take the parents out of the room and give the child mental-health testing as if they were checking for scoliosis. They have to see a dentist. They have to see a doctor. They have to go to school. Testing should be in all of those places.”

Ziedonis maintains that the Worcester Public Schools have been extremely collaborative with partners, families and providers, and are just as eager as the families for legislative process to match their needs.

“Across the nation,” says Ziedonis, “schools are having to take on some of these mental health issues. And when you enrich the neighborhoods with resources, the school can more effectively partner with the kids and family and get the help they need.”

While the children repeatedly complain about their experience at school, Metz argues that they, too, are waiting for resources to be able to help. The system gets a disproportionate amount of children in the state with complex needs, as there is a program to accept undocumented immigrants, and there are a lot of clinical services available in the area. The schools have developed referral mechanisms both with providers, agencies and emergency mental health services at UMass.

“It’s no secret that schools have been struggling with less support from the state,” says Metz, “and with an economy that is not providing tax revenues that had been projected and needed. They’re struggling to do what they want to do, but I can’t say enough positive things about the Worcester school system in terms of their concern.”

Mary Lambert, who has four children — two of them with special needs — argues that where the state falls short is within the legal court system. Kids that have challenges and land on probation or in court are often seen as troublemakers. But few, she and many of these kids say, peel the onion to realize that the trouble stems quite often from a severe imbalance that could be corrected.

“Those are the kids that are falling through the cracks,” says Lambert. “It’s clear-cut. Either you’re a criminal or need mental health treatment. If you land in juvenile court, you’re lost. Look at the prisons. I mean, look at juvenile detention. You look at probation and lock-up programs; there are a significant amount of kids who have mental health needs in that system.”

Metz adds, “That is where many of the children are ending up — in the courts and in DYS — who really don’t belong there.”

Simone is doing better because of attending things such as OTHERS (Other Teens Help Everybody Respect Self) meetings, and is searching for the right mix of medications and presently sees a therapist. Because the medication wasn’t working, he’s struggling in school.

“I want to either be an art teacher or an art therapist,” he says, “because, for me, it’s hard to talk about a lot of things. I think it’ll be easier to communicate through art with somebody rather than actually talking about issues.”

Once you understand your condition, or disease, it’s easier to move on and deal with it, says Jannelle Correa, who is the youth director at PAL.

“A lot of these kids were diagnosed later on,” she says. “They knew something wasn’t right, but no one listened to them.”

Story appeared May 29, 20018 in Worcester Magazine

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