Improving Mental Health Services
for ALL NJ KidsReprinted with permission by Cynthia Burns,
Kids Magazine, October 11-24, 1999The New Jersey Parents’ Caucus’ vision statement is one that any parent would embrace… celebrate the potential of ALL children to become loving, responsible, contributing adults.
Katherine Wagner, chairperson, says it’s intentional for ALL to be capitalized. The organization’s members have dealt with the anguish of raising emotionally disturbed children.
These parents could easily concentrate on issue specific to their children’s needs. They purposely aim for the general good. “Almost all the families had issues in pre-K, nursery school and kindergarten,” notes Wagner. “There were problems on the playground or the teacher reported incidents. The range of behaviors of our members’ children is wide. Most of the children have needed major intervention. We realize we have a stake in the well-being of all children.
“We have a unique perspective on what works for the mental health of youth and families,” she says. “We want to influence policy to change the systems in place and to bring about change that works in life.” One of the group’s goals is to increase the integration of children’s services provided by the state’s various departments and divisions for greater effectiveness and cost-effectiveness and to emphasize primary and secondary prevention.
“All children have their issues,” believes Wagner. “A kid lacks an ability, parents divorce, a friend moves, a grandparent or pet dies. If a kid really isn’t coping with reality and no one picks it up, it only gets worse. In middle school it explodes. Suddenly you’re in the fast lane developmentally and emotionally. If an issue wasn’t resolved, it breaks loose. It becomes a different category of problem.”
Wagner knows this first-hand. She watched as her daughter spiraled out of control. “She had many bad situations in grade school. Small kid, small problems. In seventh grade she was weepy and unhappy. In eighth grade she began acting out. She was truant and flamboyant in her behavior.”
Getting sent to the principal’s office was a regular occurrence. Wagner and the school’s staff developed strategies to help her daughter cope. When she began to lose control, her teacher would place an eraser on the girl’s desk - a sign that she was to go to the resource room to cool down. Sometimes Wagner’s daughter would get the eraser herself.
The girl began drinking during and after school, yet she did her homework and ate dinner with her family. Wagner explains that her daughter was evaluated by the child study team. They concluded she didn’t have any learning disabilities. The only special education classification they could have applied was emotionally disturbed. “They told me, ‘You don’t want to do that,’” Wagner recalls. Given her daughter’s behavior, she felt it was justified.
New Jersey recently redefined its 13 special education classifications to comply with federal definitions. Diana Autin of the Statewide Parent Advocacy Network (SPAN) explains that of the 13, two deal with emotional problems. A classification of emotionally disturbed means exhibiting an inability to learn that cannot be explained by intellectual, sensory or health factors; an inability to build or maintain satisfactory interpersonal relationships with peers and teachers; inappropriate type of behaviors or feelings; a general pervasive mood of unhappiness or depression or a tendency to develop physical symptoms or fears associated with personal or school problems. These characteristics must be evident over a long period of time and to a degree that adversely affects a student’s educational performance.
Another classification, social maladjustment, means a consistent inability to conform to the standards for behavior established by the school and that is disruptive to this education of the student or other students. As with all students who have been classified, they are entitled to an education in the least restrictive atmosphere. Autin notes that many steps are taken before a student is sent out-of-district. Among them: in-class strategies, pull-out resource rooms and self-contained classes. Only when the student’s individualized education plan can’t be implemented in the district, would he or she be sent out-of-district.
The Youth Consultation Service (YCS) operates day treatment, residential and preschool intervention programs for children who are emotionally disturbed or have severe mental illness. School districts contract with YCS for services. Ruth Ann Hunt, Director, Early Childhood Specialized ChildCare explains that where a student is placed depends on the severity of the problem. “Usually, it is not limited to one choice of school or program for the student. There is input from the parents. It has always been a collaborative process between the child study team, Youth Consultation Service and parents.”
“Special education would have offered a day school out-of-district,” Wagner recalls. “We visited several of them, but found them lacking.” Instead, the family
chose a private boarding school in Maine. Wagner speaks highly of the philosophy of the Hyde School. “Character education is the theme,” she explains. “They lock into the unique potential of each child. At Hyde, sports, theater and community service are as equally important as tests. Kids are always searching for themselves through curiosity, courage and leadership.”
It is in this area Wagner believes public schools fall short. “Public schools have decided they not in the mental health business, they’re in the education business. They think they can keep them separate. They line kids up by academic giftedness through testing. They might as well line them up by height. It’s such a narrow way to evaluate a person. Compare that to the Hyde philosophy of each child’s unique ability.”
At 15, Wagner’s daughter ran away from a West Coast boarding school. Her family did not hear from her for three months. The girl made her way east to Atlanta to live with the family of a friend.
“Supposedly, she needed care 24 hours a day, seven days a week,” Wagner muses. “She was barely 15 at this point. In my case, I let go. After two hospitalizations and two boarding schools I told her, ‘I tried everything. I’m scared for you. I love you, but goodbye.’ It was the opposite of throwing her out of the house. It was profound. It was letting go.”
When she was 18, Wagner’s daughter came home. “There were a lot of ups and downs,” notes the mother. After one incident, a judge mandated community service and therapy, rather than jail. This was the turning point. The girl worked to put her life together. Now in her 20s, she works full-time and is independent.
Katherine Wagner could have breathed relief and moved on. Instead, she promotes the mission of the New Jersey Parents’ Caucus. She explains, “If we fell into the public system we would have lost her. We were in a better situation financially than other families and chose private schools. A lot of parents develop a spiritual sense and think, ‘I’m meant to do something about this.’ I don’t know how long I’ll be involved. Sometimes I think it is a family and personal destiny.”
The Caucus, which has functioned as an advocacy group for 10 years, became a statewide organization in 1996. They developed the Children and Family Initiative, ten points that outline what is needed to ensure that children and families receive the services necessary to overcome obstacles and to become productive, active participants in their communities. A key point is being able to access a unified and integrated system of services and to have them planned and implemented through agency collaboration, coordination and leadership at all levels of government. The document has received support from many statewide children’s advocacy and mental health organizations.
The Caucus’ efforts are paying off. Last April, Governor Whitman announced the Children’s Mental Health Initiative, charging the Department of Human Services to change the way funding, specifically Medicaid, is used for mental health care. Currently, Medicaid pays for hospital and residential-based services for its clients. The change would mean the community and in-home care would be paid for as well.
Another aspect of the Initiative is Early and Periodic Screening, Diagnosis and Treatment (EPSDT), which entitles young children who qualify for Medicaid or NJ KidCare to be screened for mental health. “This will create a different infrastructure of services that will benefit all,” says Wagner.
The Caucus also received $10,500 of state grant money to recruit and train parents to be advocates. “There will be seven focus groups in October, says Wagner. “We will talk to parents about what they need to be more effective and to look at barriers to services, whether it be the lack of beds in residential programs, the lack of communication between different state agencies or family barriers. All who attend will be offered the opportunity to attend training sessions in November to become advocates. Our goal is to have 50 parents across the state serve as advocates.
“We have to address kids’ needs at an earlier age,” she says. “Parents are the experts in what they really need. They may just need some direction on how to speak up.”
Cynthia Burns is a Contributing Editor for KIDS Magazine and is the winner of two national Parenting Publications of America Awards of Excellence. She lives in Mahwah, NJ with her husband and ten-year-old daughter, Samantha.