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Thursday, June 29, 2017

Trump’s Budget Takes Aim at My Sweet Son

From The New York Times

By Kathleen O’Brien
May 24, 2017

President Trump’s budget is here, and it contains serious cuts to the social safety net. One of the big changes is a plan to slash more than $800 billion over the next 10 years from Medicaid.

Students at a school in Brooklyn that integrates children with autism.
Credit: Joshua Bright for The New York Times

You may think of Medicaid as a program for the poor, but it also helps a variety of other vulnerable populations. Children with special health care needs rely on the program for services not typically covered by private health insurance, which helps them stay at home with their families.

There are about five million children with special health care needs who receive benefits through public health insurance programs, including Medicaid. Proposed limits on a per-person basis are expected to disproportionately affect these children and their families, limiting access to costly but necessary services.

My sweet son is in this category. He had three different evaluations around the age of 2, to confirm the autism diagnosis I first suspected when he was 15 months old. There were many more evaluations after that, to assess the scope of his needs and strengths.

Autism is a spectrum disorder, so where would he fall? It was hard to tell in the beginning. Lots of well-meaning people would make comments: “He looks fine!” “That seems like typical kid behavior,” and an autism mom favorite, “You know, Einstein didn’t talk until he was 4!”

I was lucky to be able to switch to a part-time schedule at work. Moving to weekend shifts eliminated child-care costs, making the difference in my take-home pay negligible. I focused on my son’s progress in crucial areas: getting him talking, interacting and smiling; moving him out of diapers; teaching him to read.

Therapists did wonders. They also gave lots of advice. “Try to cut down on his arm flapping.” “Redirect him when he looks out of the corners of eyes.” “Don’t let him spin objects.” I drove myself to tears trying. At nap time I resorted to climbing into his crib to snuggle and sing because it was the only way I could get him to stop waving his hands in front of his eyes.

“I would cut off my arm to help him,” I told his developmental pediatrician on one visit. She said it wouldn’t work — and that I needed both those arms anyway, to care for him.

When he was 4 and attending a preschool for children with special needs, a lovely social worker was assigned to help us. In our first meeting, she encouraged me to apply for a Medicaid waiver, designed to help “medically needy” families, regardless of income, care for children who otherwise would need the type of services provided in a long-term care facility. Studies have shown that Medicaid waiver programs are cost-effective and often a preferred choice because they keep families together.

The social worker kept following up on the Medicaid waiver throughout the year. I reacted with fear. If she was recommending this, it meant she thought his autism was worse than I was willing to admit.

I was determined that he would make so much progress that we wouldn’t need the waiver. “Don’t sell him short!” I thought. But the social worker gently convinced me that my son would benefit from the services, and she did the heavy lifting to get the process started.

At a checkup when my son was almost 5, the developmental pediatrician was brutally honest: She said she did not expect a child like mine to ever be able to live independently. I suppressed fury and shock, and just listened. Both the social worker and the doctor were trying to prepare me for the future.

My son is almost 7 now, and adorable. More often than not, he is happy and affectionate. He loves to draw, go swimming, ride the subway and go out for ice cream. His father and I find him perceptive and sometimes brilliant, regardless of what any evaluations say.

Caring for him, though, is often exhausting. Like many children with autism his age, he tends to wander off from safe, supervised places, so I need to watch him constantly. And he has cycled through the severe sleep disorders and gastrointestinal distress that are common in people with autism.

His father and I have been near our breaking point more times than I care to admit. On one evening — isolated, sleep-deprived and financially struggling with therapy bills — we had a frank talk about what we were facing. And he said something that still echoes on the hardest days: “Our lives are unbearable.”

We just began receiving services through the Medicaid waiver program, including “respite” child care to help reduce our family’s stress load.

Mr. Trump’s budget cuts, part of the continuing war on Medicaid, will likely mean cuts to the waiver program, adding to the burden for families like mine. It will also hurt adults with disabilities, poor children and the elderly in nursing homes, all covered through Medicaid, too.

Republicans and Democrats in Congress should reject this attack on Medicaid, a vital, often overlooked part of the safety net. They should take a stand for the people in our communities who are least able to stand up for themselves.

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