Objectively Speaking

The Strange Math of Disability Services

Every year, a social worker comes to our house to determine how much support my adult daughter needs.

Maya has Prader-Willi syndrome and autism. She cannot safely be left alone and none of that changes from year to year. What does change, apparently, is how many points the county thinks those facts are worth.

The assessment is supposed to determine how much help Maya qualifies for and, ultimately, how much funding the county will provide. Reasonable enough in theory.

In practice, it is a social worker with a clipboard sitting at our kitchen table asking Maya about her hopes and dreams.

I want to be clear that Maya has hopes and dreams. She has quite a few of them.

On the day of this particular assessment, her primary hope was to become a cashier at TJ Maxx.

Maya readily answered the assessor’s question after question, each response short and matter-of-fact, delivered in the same monotone voice she uses for nearly everything.

Maya’s answers were brief, but they added up to a specific and appealing picture: a young woman who wanted to work, socialize, travel, and build an independent life.

The assessor smiled and nodded, as Maya answered the questions appropriately. The assessor seemed satisfied with what she was hearing.

I sat beside them feeling proud of my daughter, but afraid that the version of Maya taking shape across the table appeared more independent than the real one.

Maya’s answers were not supposed to count toward the scoring. Officially. But there is what the form measures, and then there is the impression a person leaves sitting across the table.

Then it was my turn.

This was the part that counted. The part where a trained professional asks questions about daily functioning and turns your daughter’s life into points.

I tried not to over-explain. After twenty years of dealing with systems like this, I have learned to answer the question being asked, lead with the facts, and resist giving a twelve-minute answer when a two-minute one will do.

But I was also aware that I was describing a Maya the assessor had not seen.

I told her about the meltdowns and what happens when anxiety collides with rigidity and a routine changes without warning. I explained the times it escalates beyond what we can manage quietly and becomes the kind of crisis the neighbors notice.

The kind that has led us to call the police.

The assessor’s expression shifted. Not to one of concern or recognition, but to puzzlement.

It was as though I were describing someone she had not met, because I was. She was holding the image of the young woman who had answered questions about TJ Maxx, doing things with friends, and wanting to travel to Paris to see the Eiffel Tower, and I was handing her something that did not fit that image. She could not quite make the two versions belong to the same person.

At some point, she asked me whether Maya “just gets behaviors when she’s hungry.”

I explained that PWS affects hunger, yes, but also behavior, anxiety, cognitive flexibility, emotional regulation, sleep, executive functioning, and roughly seventeen other things I could describe in detail if she had an afternoon.

She nodded in the way people nod when they are waiting for you to finish.

She wrote something down.

At the end of the visit, she told me she was adjusting Maya’s score downward by a couple of points. Maya was performing higher than she had the previous year, she said.

This was not true.

Maya’s skills were essentially unchanged. Her ability to manage anxiety and unexpected change had gotten worse and she still could not safely be left alone with food. She still needed help navigating the community. She still needed someone nearby when a small change in routine became a crisis.

But I told myself a couple of points could not mean much.

The paperwork arrived a week later.

Those couple of points had cut our budget in half.

Half.

Not adjusted, not reduced, half.

The hours that allow me to work and sleep, and occasionally remember that I have opinions about things unrelated to disability funding.

Maya had not become less disabled.

She had apparently become less expensive.

If you thought Prader-Willi syndrome was only about hunger, welcome to the roughly seventeen other things. PWSA USA can explain: PWSA | USA

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