Twenty years ago my husband and I were faced with a challenge: Jonah, our then-three-year-old who has Fragile X Syndrome, was attending a county-run preschool for children with disabilities but he wasn’t getting the services he needed, especially intensely-targeted daily speech therapy for his severe apraxia. What to do?

We already knew: Jonah needed to attend a different school, one that focused on speech disorders while addressing his global developmental delays. We even had a school in mind, one licensed by the State of New Jersey as an approved private school for students with disabilities. But how could we get our local school district to agree to send him there, especially given much higher tuition and transportation costs?

IT’S ALL ABOUT THE IEP

Start with this: All successful outcomes circle back to your child’s Individualized Education Plan, or IEP, and changes in placement require your relentless advocacy. So let’s get started!

If you’re the parent of one of the 240,000 New Jersey children classified as eligible for special education services, you’ve worked with your Child Study Team to create an IEP, a document based on a federal law called the Individuals with Disabilities Education Act (IDEA) which says all school districts must provide special needs children with a Free, Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE).

What does this mean? For FAPE, “free” means the district pays all costs. But what is “appropriate”? And how do you balance the upside of inclusion (“least restrictive environment”) with a child who can only make “appropriate” progress in a more restrictive environment, like a non-district school?

Six years ago parents like us got an additional tool from a 2016 U.S. Supreme Court decision, Endrew F. v. Douglas County School District, that said “appropriate” doesn’t mean “minimal.” A fourth grader named Drew, who has autism, was attending his public school in Colorado but his parents believed he wasn’t making adequate progress. At their own expense, they moved him to a private special education school and sued the district to recover their money.

While a lower-level court sided with the district, saying IDEA only required Drew to make “minimal” progress, the Supreme Court said a child’s “educational program must be appropriately ambitious in light of his circumstances” and that “every child should have the chance to meet challenging objectives.”

RAISING THE BAR FOR SPECIAL NEEDS FAMILIES

Whoa! This was a game-changer for special needs families, dramatically raising the bar for school district obligations towards children with disabilities. What does this mean in your fight to get your child into a private placement?

First, remember the first rule of special education advocacy: the determination of your child’s placement is decided after your IEP is complete, which includes narratives of your child’s present levels of academic achievement and performance, goals for the coming year, how many minutes a week your child will spend with specialists, etc.

Until this process is finished, no one should be talking about where the IEP will be implemented and what is the most “appropriate” placement. Everything is on the table and cost can’t be a factor.

Now we get to LRE: IDEA says that a child must be educated in the “least restrictive environment,” which moves up a ladder from the most inclusive (a general education class) to least inclusive (residential setting or homeschooling). If your goal is a private school, you’re asking the district to approve a more restrictive environment and the only way to justify this is to prove that your child is not making adequate academic and social progress. In other words, you have to make the case that your child is not receiving FAPE.

This is a hard sell so you must convince the Child Study Team that your child will make more progress in a different school. This may mean going to “due process,” or using the legal process to appeal the district’s reluctance to pay for an out-of-district placement. (See “Parental Rights in Special Education” for explanations and sample letters.)

Some parents can pay for a lawyer and additional expert evaluations. Some parents even do what Drew’s parents did: disenroll your child from the public school, pay the tuition at a private school, and then sue the district for all expenses.

For others, this outlay of cash is not an option. It wasn’t for us but this was two decades ago, before many districts had preschool and K-12 programs for students with significant disabilities, so our district had no choice.

Under newer circumstances, you have to build your case: ask for more frequent IEP meetings (you can call them at any time) to review your child’s academic and social progress, take advantage of the district-paid independent evaluations available to you through state law, and document everything: emails, notes, phone calls, report cards, tests. You are creating a file of your child’s lack of progress to demonstrate the district is in violation of FAPE.

Contact the Statewide Parent Advocacy Network for help. Talk to other parents and learn from their experiences. Go to school board meetings and speak during public comment about the district’s failure to adhere to established law.

Sure, that’s scary. But sometimes you have to play hardball and as a parent of a special needs student you’ve cultivated your inner lion. Don’t be afraid to roar!

EXPLAINER: What Is an IEP and How to Make Sure Your Child’s Needs Are Met