When thinking about the challenges parents face when looking for special needs education today, I have to reflect on the conversations I have daily.
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Each day, I meet and interact with people at the forefront of education - school leaders, speakers, psychologists, families.
One thing is clear: things are changing.
In the late 1970s the US introduced the IDEA - the act that made it a necessity for families to be able to obtain a ‘free and appropriate’ education regardless of income level and regardless of the behavior of their children.
That led to inclusion - a further evolution from the old days of exclusion - terrible places where students were separated from their peers in often horrendous institutions.
Now there are many accommodations available, yet still some people are not aware of them.
Last week I spoke to a former teacher whose niece was in a bad schooling situation - the child was not able to get care from the school and was missing valuable class time. The aunt, being a former teacher, was aware of her niece’s abilities and found the school to be unable to accommodate due to the child’s behavior. This caused the child to not have the class time needed - and the school wouldn’t pay for the autism specialist to join the class. Though informed of her rights to seek an IEP with the school board, she seemed despondent.
And the landscape may be getting more complicated. North Carolina's legislature recently advanced a bill that would introduce stricter rules around Medicaid coverage for ABA therapy, one of the most widely used interventions for children with autism. At the same time, the federal government is pursuing roughly $1 trillion in Medicaid cuts over the next decade. For families who rely on Medicaid to fund therapy and support services, these are not abstract policy debates. They are decisions that will directly affect how much help their child receives and who pays for it. Awareness of your rights has never mattered more.
That is why conversations like the one I had with that aunt stay with me. Progress is real. The laws are there. But a right you do not know you have is not really a right at all. The families who get the best outcomes are almost always the ones who had someone in their corner, someone who knew the system and helped them ask the right questions. That is the work that still needs to be done.
About the author:
Eric Sampson is the founder of Special Needs Care Network, a platform connecting families of children with special needs to verified schools therapy providers across the United States.