It’s getting weird…

 For almost 22 years, I have watched the provider problem get worse.

The conversation is often framed as a shortage of workers.

And yes, there is a shortage.

But I increasingly believe that is only part of the problem.

The deeper question is whether our systems are built to recognize and support people whose needs fall outside the models they already know how to administer.

My son Alex is cognitively intact, fully self-directing, and profoundly physically dependent because of an extraordinarily rare cervicomedullary/high cervical injury. His life is sustained in the community(in his home) through a combination of technology, individualized knowledge, skilled physical assistance, and the ability to respond appropriately when his physiology behaves in ways that are not always predictable or “cookie cutter.”

I say that we’ve learned how to work his body not against his body. 

For years, I have watched systems try to solve that kind of complexity with standardized categories, task lists, provider credentials, and existing service models.

Those tools have value.

But they also have limits.

A license does not automatically establish competency with every diagnosis, technology, or individual.

A task list does not necessarily capture judgment.

A standardized assessment can identify a risk without accurately measuring the response time or expertise required to manage it.

And a provider shortage should not automatically become evidence that community living is no longer feasible.

That distinction matters enormously.

The question should be:

Is Ohio solving the barriers to community care—or increasingly treating those barriers as evidence that community care is not feasible?

That is why the suggestion that facility placement could become “inevitable” is so concerning to me. 

If community supports are difficult to staff, that does not mean the person suddenly needs institutional care.

It may mean the support system itself has failed to evolve.

The danger is subtle.

A state does not have to announce that it is abandoning community care.

It can simply allow community supports to become harder to access, harder to staff, harder to individualize, and harder to sustain—until a facility begins to look like the only workable option.

At that point, the system may describe the placement as inevitable.

But was it really?

Or did the system gradually make the community option impossible?

For people with significant disabilities, that is not an abstract policy question.

It is the difference between asking:

“Where can we place this person?”

and asking:

“What needs to change so this person can continue living safely in the community they chose?”

For almost 22 years, Alex has shown that complex medical needs and meaningful community life can exist together.

The challenge now is whether our systems are willing to learn from people like him.

Because provider shortages, outdated frameworks, and administrative limitations should never be mistaken for proof that a person does not belong in the community.

Sometimes the problem is not that community living failed.
Sometimes the system failed to support it.

And remember…Alex is a 28 year old independent adult. Where’s his independence and rights? 

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