Creating stronger advocates

Upper Freehold groups helps parents of special-needs students work toward more inclusion in the school district.

By: Cynthia Koons
   UPPER FREEHOLD — The idea is to devise a plan.
   Special educators, psychologists, administrators, therapists, parents and sometimes children (if they’re old enough) meet to determine the expectations and guidelines for educating a student with special needs.
   Yet sometimes, educators’ and parents’ ideas conflict.
   For parents, a lack of training in the special education field often leaves them at a disadvantage when they enter the meeting phase.
   Child study teams specialize in creating an Individualized Education Plan (IEP) to monitor and guide the child’s special education.
   While parents are active in the development of the IEP by participating in the annual meetings, the lengthy and specialized process can seem daunting.
   After sensing she was not alone in feeling this way, parent Kelly Borden-Joye formed a parents advocacy group in Upper Freehold, Recognizing Issues in Special Education (RISE).
   "RISE was a response to the need that parents needed more support in the IEP process," she said. "As a group we could make a positive change in the district to include more students."
   The group advocates for inclusion, the incorporation of special education students into general education classrooms.
   "I hope to make the special education process less overwhelming and help parents advocate for their child’s needs and encourage them to seek out a more inclusive setting for their child," she said.
   Ms. Borden-Joye was introduced to the world of special needs years before her preschool daughter was diagnosed with Down syndrome.
   She had worked as a job coach for developmentally disabled adults in graduate school and still works as a dance therapist for autistic children and their parents.
   She said parents of special-needs students must educate themselves about their child’s disability in order to navigate the education process.
   "You are your child’s best advocate," she said. "Even though special educators are highly trained, they’re not highly trained in your child’s disability. They have a lot of other kids to think about, too.
   "They try to help you but it’s limited just because the way the system works," she said.
   To make the system work for them, RISE parents have applied for and were just awarded a $300 grant from the Inclusive IEP Partners Project to fund a "support parents" training workshop.
   Support parents would live up to their title by being available for parents who are new to the IEP process, Maryann Frisbie, co-chairwoman of RISE, said.
   "The support parents are going to be available to meet with parents on the phone and at IEP meetings (to) help them gain a more inclusive setting for their children," she said.
   Inclusion, she said, is effective only when teachers handle the class dynamic properly.
   "I’m an advocate for inclusion with the proper support," Ms. Frisbie said. "I believe that inclusion can work if it’s done properly, but every child is different so it really depends on the child’s particular, individual needs"
   Inclusion can vary in scope depending on the severity of a child’s disability.
   Joe Jakubowski, the Upper Freehold Regional School District’s director of special services, said a child’s educational setting can range from as inclusive as working with a supplemental aide in the classroom to as restrictive as residential housing.
   "It’s only limited by your own imagination, but it should never exceed the needs of the child," he said. "You never do more for a student than needs done."
   The minimum level of assistance incorporates supplemental aides and services, followed by in-class support. In-class support requires the district to place a special education teacher in the classroom to supplement the regular teaching staff.
   In other scenarios, Mr. Jakubowski said students are removed from the classroom for different subjects.
   The most restrictive environment involves removing a student from the school facility altogether, by either placing him in an out-of-district public school that offers special services or in a private institution that specializes in his disability. In Upper Freehold, 12 kids are placed out of the district at the high school level and seven kids are removed from the district at the elementary school level.
   "There’s a great deal of emphasis on keeping these kids in their home environment," Mr. Jakubowski said. "Most parents these days are pushing very hard to keep children in the general education program to derive meaningful educational benefit."
   The parents’ opinions, however, are not the final say in the child’s educational fate.
   "The Child Study Team and the school must make the decision on what they believe is best for the child," he said. "A couple of times a year you have to enter a process to resolve the differences (between parents and educators.)"
   Mediation between schools and parents can escalate to a legal level, if no resolution is determined. A judge then has the final say in the child’s program. In Upper Freehold, a judge hasn’t been called upon in a dispute within the past few years, Mr. Jakubowski said.
   "It’s a bad thing," he said. "You have to work together on behalf of those children. A parent has knowledge of a child in one environment. We have knowledge of a child in another environment."
   Ms. Borden-Joye said the disparities between educators’ stances and parents’ positions has led to the creation of a number of special-interest groups that lobby for inclusion in special education.
   "Sometimes parents don’t feel that they’re equal partners," she said. "All the acronyms, laws and legal stuff gets daunting."
   To simplify this process, Ms. Borden-Joye and Ms. Frisbie are working to train anyone who is interested in acting as a support parent at a May 20 training seminar at the Upper Freehold Regional Elementary School.
   "We’re trying to make the special education process, in part the IEP meeting, more parent-friendly," she said.
   Ms. Frisbie said she already acts as a support parent for four families with preschool-age children, whom she’s met through her involvement with her own son’s preschool education.
   "(The parents) just don’t understand how the whole process works," Ms. Frisbie said. "You write the letter (to the school) saying you want the child evaluated. The Child Study Team does a good job evaluating and then they hand you this book — it just tells you the law."
   "It’s like reading a manual on how to put things together — it’s easier if someone just shows you how," she said. "You’re dealing with an overwhelming fear. They’re upset because there might be something wrong with their child. It’s very emotional."
   Ms. Frisbie began dealing with her son’s diagnosis with autism by educating herself about the disability.
   "I spent almost a year and a half just trying to learn and read everything I could," she said. "Then I joined RISE and decided that I had learned a lot and that I could help other people."
   She said a few parents have already expressed interest in becoming support parents. Ms. Borden-Joye said RISE has a core contingent of members and a group of 20 additional parents attend at least one monthly meeting a year.
   Their group has gained formal recognition from the Parent-Teacher Association, which gives them some forward momentum in their push for inclusion.
   "Some parents may have concerns that a student with disabilities may bring a class down," she said. "But what you find if a teacher is teaching on a variety of levels, that it really is beneficial for all students.
   "(We’re) challenging educators to work in new ways," she said. "The students and the parents find that it’s really been a rewarding experience."