Why the New Healthcare Bill Is So Unfair to Kids With Special Needs

Hey Congress,

It’s me, a mom of a beautiful boy with autism. I just wanted to give you a little reminder: every child has the right to a free and appropriate education. This is the law. However, if you ask me, the law might as well say every child has the right to free and the minimum amount of education, right? Because it seems like that’s how you’re interpreting it. The American Health Care Act, which passed the House last week, is a major insult to families like mine. That’s because it guts $880 billion from the Medicaid fund that helps pay for everything from physical therapy to feeding tubes for special needs kids in public school.

Let me explain my frustration. I had a normal pregnancy, delivery via (C-section – you know, a preexisting condition! – and was blessed with a healthy baby boy; all 9 pounds of him were perfect. He was a great sleeper, eater, and the happiest when staring at his older brother. It was not until he turned 3 that my husband and I knew we were dealing with something more than a speech delay. He was diagnosed with autism a few months before turning 4. (I’ll write you more about that another time. For now, it’s important to stick with the present.)

My son attends a special needs preschool program that is run through our school district. He gets speech and OT therapies weekly. Don’t get me wrong; I’m extremely grateful that I live in a town that has a program and therapies for my son. But to think that that they are enough to meet his needs is insane. We, and most families who have special needs children, have to do private therapies outside of school to continue to meet the needs of our kids. And just another reminder: those needs are constantly changing. The school district budgets are tight, and although our kids get services, sometimes they are done in a group setting or not as often as needed. It’s just the reality of the system. For my son, we take him to speech and OT therapies weekly outside of school, plus, once a month take him to see a holistic speech pathologist. She is wonderful but pricey! Luckily, we have health coverage through my husband’s employer. However, not all of the therapies are covered by insurance, and copays can really add up! But I often say, are we really going to let something like money stop us from trying something that might make a difference for our child?

It’s exhausting, expensive, and overwhelming to be a parent of a child with special needs. But it is nothing compared to what our children are going through. Thank goodness there are programs like Medicaid for families to help support and allow our children to receive therapies in and out of school. Oh, but wait – we must remember the American Health Care Act. You know, the healthcare bill that is being touted as a win. Let me remind you again that it’s actually a big loss for special needs families. I guess money does make a difference when it comes to helping kids who are by law required to receive an appropriate education. It’s a shame. I guess because our kids learn differently, we’re screwed! Awesome.

Well, this is one mom who can’t stay quiet. Our kids deserve the chance to thrive, regardless of economic status; they need to receive at least the minimum therapy in and out of school. Seriously, it’s frustrating. Why do I even need to remind you of all of this? All I want for my child is a chance. He has goals and a bright future. He has come so far but has so much farther to go. But if you cut Medicaid funding and the district has to cut jobs and he loses a portion of the therapies he receives and his progress gets stalled, well, then you will be sorry! Please leave our kids out of this mess. Haven’t they suffered enough already?

Don’t make me send you any more reminders. Just do what is right and protect the law.

Talk to you soon,
Matthew’s Mom

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Why the New Healthcare Bill Is So Unfair to Kids With Special Needs

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