Five Words

 You can see how very thin Alex was in the picture with Grace.

Five Words Can Completely Change a Story

“Offered food. Refused to eat.”

That sounds pretty straightforward, doesn’t it?

Except imagine this is what actually happened.

The person is hungry.

He wants to eat.

But when he eats solid food, his stomach begins to hurt.

Then his head hurts.

Then his blood pressure and heart rate begin to change.

And he knows the sequence well enough to explain it.

That was my son Alex when he was about 11 years old.

He was in a pediatric intensive care unit surrounded by highly trained physicians. When his difficulty eating was initially approached as though his appetite might need to be stimulated, Alex spoke up.

He told them he was hungry.

Then he explained what happened to his body when he tried to eat.

His physicians listened.

His doctor brought in specialists who understood the autonomic nervous system. They combined what Alex was telling them with their medical knowledge and tried to understand what his extraordinarily injured nervous system was doing.

Even for highly trained specialists, it wasn’t simple.

Now imagine the same event at home with someone who doesn’t know Alex well.

“Food offered. Patient refused.”

Five words.

Technically, a task was documented.

Clinically, almost everything important disappeared.

And that is what worries me about standardized assessments being used to determine the supports of people with extraordinarily complex disabilities.

Not because standardization is automatically bad.

Because what happens when the person doesn’t fit the standard?

Alex does not have an intellectual, cognitive or behavioral disability.

He understands.

He communicates.

He directs his care.

What he cannot do is physically execute much of that care himself.

That distinction matters enormously.

Over the years, Alex has repeatedly recognized things happening inside his body and communicated them to the people caring for him.

After kidney-stone surgery, he told the hospital team that his urinary drain was clogged while he was experiencing autonomic dysreflexia.

There was another episode involving his chest drainage.

There have been times when he has detected changes before a monitor made the situation obvious.

He cannot physically get up and fix those things himself.

But sometimes he is the first person in the room who knows something is wrong.

That is why I often say:

Alex’s challenge is not self-direction.

It is self-execution.

And those are not the same thing.

Here’s another example.

Alex uses a diaphragm pacer as his primary respiratory support, with a ventilator providing additional support.

Those aren’t interchangeable machines.

His respiratory system doesn’t fit neatly into a checkbox labeled simply “ventilator.”

In October 2023, we arrived at a major medical center for surgery. Because of a communication problem, Alex initially ended up on a floor that did not care for patients using ventilators.

He was transferred.

Think about that.

We were already inside a major hospital, surrounded by licensed medical professionals.

And the hospital itself recognized that not every nurse and not every hospital floor was appropriate for his respiratory needs.

Yet families caring for medically complex people in the community are often confronted with a much simpler assumption:

If someone has the right license, they can provide the care.

Alex’s life has taught us otherwise.

A license establishes a professional qualification.

It does not automatically establish individualized competency for a particular person’s physiology, equipment and risks.

And now Ohio is changing the way people with developmental-disability waivers will be assessed.

The state recently explained that interRAI assessment results will eventually help place people into Support Levels based on assessed need relative to other people receiving DD waivers.

Those Support Levels will help inform IO waiver budgets and certain service rates.

That makes a question I’ve been asking increasingly important:

What happens when the person’s needs do not fit the structure used to measure them?

Because we already have a real-world example.

Alex’s current assessment contains a seizure history.

Alex does not have a seizure disorder.

When I questioned it, I was told it could be corrected—but was also reminded that removing it could potentially lower his funding level.

Think about that for a moment.

Nothing about Alex changes when that box is corrected.

His spinal cord injury doesn’t change.

His respiratory dependency doesn’t change.

His autonomic instability doesn’t change.

His physical dependence doesn’t change.

His need for another person capable of recognizing and responding to rapidly changing medical situations doesn’t change.

Only the box changes.

So if correcting inaccurate information can make the calculated level of need go down while the person’s actual need remains exactly the same, we should be asking a much bigger question:

Where did the need go?

Maybe “seizure” is something the assessment knows how to count.

But what happens when some of Alex’s most consequential needs don’t have equally effective boxes?

That isn’t an argument for leaving inaccurate information in an assessment.

It is an argument for fixing the measurement.

Ohio has also said there will eventually be a process for requesting additional funding when documented needs exceed someone’s assigned service band.

I’m glad there will be an exception process.

But that creates another important question:

What documentation will count when the reason someone needs an exception is that the assessment itself did not adequately recognize the need?

Hospital records?

Physician orders?

Specialist documentation?

The individual’s own description of his body?

Family knowledge developed through decades of caring for that person?

Evidence that a “standard” intervention has already been tried and wasn’t safe?

And who will be responsible for understanding that evidence?

These aren’t attacks on modernization.

They are questions that should make modernization better.

Because an assessment can be completed perfectly and still produce the wrong picture.

Every answer could be entered correctly.

Every box could be checked according to the instructions.

Every calculation could run exactly as designed.

And the result could still fail to describe the person standing in front of us.

That is the issue I keep asking Ohio to address.

Not:

“Can you make Alex fit the assessment?”

But:

“Can the assessment accurately see Alex?”

There is an enormous difference.

And Alex isn’t the only person who matters here.

Every standardized system has outliers.

The people at the edges aren’t inconveniences to be dealt with after the model is built.

They are some of the best tests of whether the model actually works.

Before an assessment determines someone’s support, we should be willing to take the people who are hardest to measure and intentionally run them through it.

Ask what it sees.

Ask what it misses.

Ask what gets flattened into a familiar category.

And then fix those weaknesses before someone’s life is determined by the result.

Because somewhere there is another person whose:

“I am hungry, but something happens to my body when I eat”

could become:

“Refused food.”

And somewhere there is another person whose complicated medical reality may be reduced to the closest box available.

We can do better than that.

Don’t force the round person into the square box.

Change the box.

And before these systems begin determining people’s supports, ask one very simple 

question:  What does the assessment fail to see? That is where I’d start.