‘Special Education is a Service—Not a Place’

By Kami-Leigh Agard

Navigating the special education process with your special needs child may seem like going on a Disney safari. The landscape looks picturesque. Beautiful skies, inhabitants running free—but what is the reality? Are special education programs really nurturing our children? At just 17 years old, my nonverbal autistic daughter has attended two NYC public schools and two private schools, and quite frankly, it’s been a mixed bag. She currently attends an ABA (applied behavioral analysis) state school. So far, so good. However, I’m a pragmatist, and can’t sugar coat the reality that it’s been a constant fight. This is why I tell parents that it’s imperative you know your parental rights in the special education process.

Full disclaimer: I’m not accusing our dedicated schoolteachers, therapists and administrators of intentional wrongdoing when it comes to the care and education of our special-needs children. Over the years, my daughter has been blessed with loving teachers, paraprofessionals and therapists, but when you see regression or even stagnation in your child’s progress, you have to ask questions and if dissatisfied with the answers, request an independent Department of Education (DOE) funded re-evaluation of your child.

When my daughter was in the third grade at a NYC DOE District 75 school, and suddenly stopped talking, I was dumfounded. In her private preschool, she had some speech, did her homework assignments and repeated words from books we read. Cutely enough, she pronounced words in my high-pitched, over-enunciated Mancunian accent. For example, wah-tah. Then suddenly, poof! No language.

So, my daughter’s dad and I decided that something needed to be done. After much research and conferring with professionals in the special education field and other parents, we hired a special education lawyer, who advised that a reevaluation was needed.

We first looked into paying for private evaluations on our own. The price? Upwards to $6K! Our lawyer advised that if we could prove that our daughter was regressing in her public-school program, the Department of Education (DOE) is required to pay for independent evaluators. And we had the ammunition. Several school progress reports stating: “Goal anticipated, not yet met.”

Of course, initially the DOE wanted to use their own evaluators, but eventually relented. After her speech re-evaluation, we felt like we won the lotto when our daughter was given a DOE-paid assistive technology device, (an iPad furnished with speech apps), shared with both home and school to help her communicate.

Folks, it’s a battle. You just have to be insistent, unrelenting and stay the course.

This past year, my daughter had her triennial evaluations: speech, physical therapy, occupational therapy, neuropsychological, audiological, assistive technology and Functional Behavioral Assessment (FBA). An FBA is used to identify the “why” behind challenging behaviors—such as tantrums, aggression, or self-injury—by analyzing triggers and consequences to develop an effective Behavior Intervention Plan (BIP). This one we had to fight for. Plus, due to her sensory overload, the OT evaluator advised in the report that she needs a sensory evaluation, which the DOE denied. However, that’s another battle that we will indubitably win.

After the neuropsychological report stated that her then private school DIR/FloorTime program was not appropriate, I transferred her to a NYS ABA program.

According to the DOE, your parental due-process rights include but are not limited to:

• Your child’s right to a Free and Appropriate Education (FAPE).
• The right to consent to all initial evaluations and re-evaluations.
• The right to participate meaningfully in decision-making through attendance at all IEP (Individualized Education Program) meetings. This includes your right to bring other individuals with special knowledge or expertise about your child to meetings to help in the decision-making process.
• The right to copies of evaluations and your child’s IEP.
• The right to conflict resolution (a new IEP Team meeting), mediation, and an impartial hearing if you disagree with any decision made about your child.
• The right to an independent evaluation paid for by the DOE.

Folks, when it comes to your special needs child’s education, never hesitate to demand what you want because you know what they need. It’s your right!

I talk about autism to open doors into the reality of our lives as caregivers, build understanding, tolerance and growth of our special children. Share your thoughts by emailing: kami@rockawaybeachautismfamilies. Plus, attend Rockaway Beach Autism Families’ monthly family support group meetings! So much information you will glean! For more info, visit: Rockaway Beach Autism Families on Facebook/Instagram.