Most schools have never taught a child with Floating-Harbor syndrome. That can mean low expectations, generic plans, and services that don’t match what your child actually needs. The law is on your side, but you often have to insist on it.
Your child’s rights, in brief
- IDEA (Individuals with Disabilities Education Act) guarantees eligible children a free appropriate public education (FAPE) in the least restrictive environment, through an Individualized Education Program (IEP).
- Section 504 and the Americans with Disabilities Act prohibit disability discrimination in schools and require reasonable accommodations.
- You are an equal member of the IEP team. Nothing in the IEP is final until you consent.
- If the school can’t provide an appropriate education, the district may be required to fund services elsewhere, including private placement or privately obtained services.
Practical steps that work
- Put everything in writing. Request assessments, records, and meetings by email or letter, and keep copies. A phone call leaves no record.
- Request a full assessment in every area of suspected need: speech and language, communication, motor skills, assistive technology, hearing, vision, and behavior.
- Insist on communication access. If your child is nonverbal or minimally verbal, the IEP should address AAC (augmentative and alternative communication), including a device evaluation and training for staff.
- Bring the medical picture. Share the FHS overview and letters from your child’s doctors. Schools rarely know this condition.
- Measure progress. Goals should be specific and measurable. Ask for progress data, not just impressions.
- Know the timelines. In California, the district must give you an assessment plan within 15 days of your written request, and hold the IEP meeting within 60 days of your consent to assess.
- Don’t sign what you don’t agree with. You can consent to parts of an IEP and dispute the rest.
What we push for
Floating Harbor works for change beyond any one family:
- Accountability when districts fail to provide or fund the services they’ve agreed to.
- Real communication access for nonverbal students, from day one.
- Respect for parents as experts on their own children.
- Awareness of rare conditions like FHS among educators, so children aren’t defined by low expectations.
Talk to someone who’s been there
Heather Russell has worked through assessments, IEPs, state complaints, and federal court to get her son Ethan the education he’s entitled to. If you’re stuck, write to her.
This page is general information, not legal advice. Laws and timelines vary by state. For advice on your situation, contact a special-education attorney or your state's Parent Training and Information Center.