World

Families of Children with Special Needs Face Tough Times

How COVID Has Increased the Burden

October 13, 2020 by

child
Children with special needs get specialized and often one-on-one classroom attention and therapy in school. Parents, working at home, can’t hope to match this level of professional instruction. Photo courtesy of Rifton Equipment.

In my line of work I find myself using a peculiar metric for comparing one country to another. I look at how they care for special needs children, what laws govern the education and healthcare for such people, how government funds are allocated, what their budget priorities are.

I work for Rifton, a company that manufactures specialized equipment for people with disabilities, and we distribute our products all over the world. That gives me a rare window into precisely where each country ranks and where we, here in the United States, could improve.

And as in so many areas, life under COVID has exposed sad deficiencies and aggravated our tendency to ignore or even hide our most vulnerable citizens. And that’s in a country that has historically been out in front in this area. Ever since Robert F. Kennedy, then the junior US Senator from New York, exposed the “snake pit” of Willowbrook State School on Staten Island in 1965, our country has seen slow but sure improvement in how we care for and educate our special needs children. (And that is skipping over the WW II conscientious objectors who, preceding Kennedy, spent the war in civilian service as orderlies in the huge insane asylums and shone an early spotlight on horrific abuses there. But that’s a story all its own.) We Americans owe a debt of gratitude to the army of activists who fought for decades among us to remove barriers and demand opportunities for those with disabilities. The recent Netflix documentary Crip Camp does a masterful job of telling that story. But COVID has shown us all too plainly where we are still failing.

Virtually all parents of school-aged children face an unprecedented burden this fall, and their stories have become ubiquitous in the media. Far less has been told about the unique, near-impossible burden on parents of special needs children and how they navigate daily life without the support of in-person therapy and special education teachers and aides. So I was gratified to see two pieces in the New York Times last month on just this topic.

The first, by Nicole Chung, is written from the perspective of a mother whose nine-year-old was diagnosed with autism at age three. (Indeed, some of the greatest advocacy I’ve seen anywhere comes from mothers of kids with special needs.) Particularly striking are the difficulties she and her husband faced even from their relatively advantaged socioeconomic perch. After describing the process of securing a customized plan for educating her child, known as an individualized education program or IEP, she writes, “[W]hile my husband and I worry about our 9-year-old’s unmet needs, we know that our struggle to be her advocates – with our combined educational and material resources, the ability to navigate the I.E.P. process in our first language, the stalwart support we’ve received from some of her educators – is and has long been magnified, many times over, in families without these advantages.”

The second, written by Hallie Levine, tells a similar story, but highlighting the efforts of school administrators and faculty to provide services in the face of budget shortfalls and distance learning challenges for their “normally abled” students, let alone those with physical and mental challenges.

Together, these stories paint a picture of quiet, lonely struggle playing out all over the country. With fourteen percent of students in the United States receiving some form of special education, even in good times school districts face enormous challenges with this particular group. Now, in a pandemic, they cannot hope to fulfill all of their federally mandated obligations, despite best intentions. Some are still trying, others not so much.

And that is here in our country. What about in countries where people with disabilities receive no accommodations for their needs? (Yes, there are many in this category.) What I hear is anecdotal only, but it’s terrifying. We can only pray for the parents in these countries. That, and do our small part to offer free equipment to those few who come to our attention at Rifton, who have no funds and nowhere to turn.

But before we become disheartened, let us remember that of all the things the coronavirus has taken away from us, it cannot quell the urge to share our stories. And for those of us who tend toward reticence, it’s prompted us to share more than we ever would have. One such story that I know involves a reclusive bachelor in Arizona. Over the past few years he has worked with Rifton to identify families of children with special needs whose insurance won’t cover the equipment they need. For each one he has covered the cost in full, only asking for a photograph by way of thanks. But that’s a story for another post.

For now let’s pray that this sharing, particularly of these lesser-known stories, leads to more compassion when normal life returns, and greater priority for the requirements of those among us with special needs.


Joe Keiderling lives with his wife Deborah at Woodcrest, a Bruderhof in Rifton, New York.

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