When the phones ring at Parent to Parent of Miami, what happens next is nothing short of miraculous to the parents struggling to educate children with special needs, disabilities and learning differences.
At the other end of the line are parents who not only have been in their shoes, but are not intimidated by terms like accommodations or Individualized Education Plans (IEP), the legal document that details the responsibilities of the school district and school staff.
With 36,000 children identified as having special needs or disabilities in Miami Dade Public Schools, thousands of parents are seeking or maintaining formal accommodations (changes in how a child is educated and tested) or modifications (changes in what a child learns) by working with school administrators and teachers. The list of accommodations is lengthy and includes preferential seating, extended time on tests and the use of assistive technologies, such as specialized apps and SmartPens that record lectures.
This figure — about 10 percent of children in public schools — does not include students in private schools, whose statistics are not public record. In addition, Miami Dade Schools says about 2,400 children in the county’s 114 charter schools, which are under the district’s regulation, have disabilities.
Some parents seek help from the non-profit Parent to Parent or from psychologists, who test children and prepare a report on the learning issues they uncover. Others go it alone or ignore the process altogether.
Parent to Parent is the only organization that trains and employs parents of children with disabilities to work with other parents.
“Everyone’s telling you everything your child isn’t, and it’s hard for you as a parent to hear,’’ says Lauren Bustos-Alban, advocacy training manager at Parent to Parent and the mother of a child with a learning disability. “That affects you. That is something we have lived personally… One thing a parent has to realize is that you don’t have to do it alone, and you can’t do it alone.”
The Florida Department of Education’s Bureau of Exceptional Education and Student Services lists 13 categories or “exceptionalities” under exceptional student education (ESE). These include learning disability, emotional/behavioral disability, autism, gifted and intellectually disability. Locally and nationally, the majority of children with disabilities, about 50 percent, have a learning disability.
Advocates say that because each child’s needs are different, there is no set sequence of actions every parent follows to secure accommodations through an Individualized Education Plan (IEP) or a Section 504 plan, both legal documents that outline the duties of the school district and school staff. The process can take months.
In general, parents of public school students must put the request in writing, asking for a team meeting and an evaluation if the child does not have a private evaluation. Disability is determined through a psycho-educational evaluation, making the child eligible for special education and related services. In some cases, such as ADHD, a medical diagnosis may also be required.
“If a parent requests an evaluation, we’re bound by a 60-day time line,” says Edna Waxman, who oversees compliance at the Miami Dade Schools’ Office of Special Education and Educational Services. “Once they sign a consent form, the clock starts ticking.”
Private schools have their own systems for securing accommodations. For example, Miami Country Day School uses a streamlined version of the IEP to simplify the plans for teachers, and runs seminars to educate them about the plans. Paule Ebrahimi, director of the Learning Resources Program, says the school considers psycho-educational evaluations, observations from weekly meetings with teachers, feedback from the school psychologist, parents and sometimes the student.
Many parents of children in both public and private schools opt for an evaluation done by an independent psychologist, although this can often run into the thousands of dollars.
Samantha Carella, psychologist and owner of Pediatric Psychology Associates, says parents want answers that explain poor test scores and behavioral issues. Private evaluations also outline what steps parents should take in the home.
Even with a valid, recent evaluation, children are not given accommodations on the spot. A “staffing” or meeting of teachers, parents, administrators and therapists is scheduled to discuss the child’s progress and needs.
The goal is to provide accommodations based on the needs of the individual child, said Ava Goldman, administrative director of the Schools’ Office of Special Education and Educational Services.
When an IEP or Section 504 meeting is scheduled, parents may feel like they have reached the Holy Grail, says Bustos-Alban, but they have to be prepared. Parents should come prepared with organized chronological information about the child’s progress, questions, and a short list of accommodations they believe the child needs, she said.
Parents are often intimidated, in some cases even bullied by schools attempting to get through a long list of student cases, says Alexian Hueso, program services manager at Parent to Parent.
Yet what sounds like a disaster in the making can ultimately result in life-changing benefits for a child, say parent Miriam Tellez. Tellez’s daughter Natalie, 8, is on the autism spectrum. At the first IEP meeting during Natalie’s kindergarten year, she says, the school recommended that Natalie attend classes in a self-contained classroom for the entire day, because of poor behavioral skills.
Tellez wanted her daughter to experience some regular classes each day, despite the classroom challenges she knew might lie ahead. Believing the exposure would advance her progress, she called Parent to Parent.
What happened over the next three years, says Tellez and Hueso, who worked with her, is an example of how the system can work well if not overnight. Tellez says that with Hueso’s help, the school agreed to expose Natalie to some regular classes.
“It was hard for Natalie because she really wasn’t ready,’’ Tellez said. “Her abilities were not at the level that they needed to be to function independently at a kindergarten level.”
However, by allowing Natalie to experience a regular class setting, Tellez discovered the therapies provided by the district were not adequate. She eventually got her additional private therapies that improved Natalie’s behavior. The teacher, who was challenged by Natalie’s behavioral issues, nevertheless discovered that the kindergartner could read.
“The teacher was really good. She gave her the sight words and exposed her to the material. I realized that she had more potential than I ever thought”
In first grade, Tellez compromised, agreeing to allow Natalie back into a contained setting, while keeping up with her reading and private therapies. Today, Natalie is in a regular classroom setting all day.
While the process worked, she says, it wasn’t easy and took time.
“I can see why some parents give up. It’s very emotionally tiring,” says Tellez, who left her career in sales to manage her daughter’s therapies and education.
She advises parents to educate themselves — and to work with the educators.
“I read a lot. I wrote down what I wanted to get and what I thought was possible,’’ she said. “They have given me the knowledge that I needed to make the right decisions for my daughter. Without them, my daughter wouldn’t be where she is today, that I can tell you.’’
Finally, says Bustos-Alban, parents must continue to advocate even after they have an IEP.
“Having a written document doesn’t always guarantee that your child will receive the accommodations he or she needs,” she says. “The best accommodation any child can have is a knowledgeable teacher.’’
Over the past 20 years, Parent to Parent, which began as a support group for parents of children with disabilities, has worked with about 20,000 families, says Isabel Garcia, executive director and a founding parent. The organization now provides services to about 2,500 parents per year.
“We as parents are dealing with many different professionals, not just the school system,’’ said Garcia, mother of a 30-year daughter with cerebral palsy. “You’re dealing with therapists, you’re dealing with health insurance, with doctors, with evaluations, psychologists, so by the time you get there, you’ve had a lot of people disappoint you.’’
Garcia says, parents must understand their responsibility in the process.
“Unless you know what to ask for or you have an exceptional team, no one is going to say, ‘Oh this is what you need to do.’ You’re going to learn that from another parent, another professional in the community.”