The Process Is Supposed to Serve the Person

 

The Process Is Supposed to Serve the Person.

I understand there is a process.

But I have a living human being who needs to breathe and move.

His medical needs do not stop while paperwork is processed.

His equipment does not wait for authorization before it breaks.

And his life should not have to be put on hold while someone determines which funding category applies.

Let me give you an example.

My son Alex relies on a diaphragm pacer as his primary respiratory support, along with additional support from a ventilator. His respiratory equipment requires reliable power, including when he is in his wheelchair and moving about in the community.

To make that possible, we use pure sine wave power inverters.

Recently, one stopped working while we were out. Fortunately, I had a backup in our van.

Then that backup developed a problem.

So I ordered two new inverters, at my own expense.

Why two? Because equipment breaks. And when someone’s breathing support depends on that equipment, having a backup isn’t a luxury. It’s part of being prepared.

These inverters have never been funded by the systems responsible for Alex’s supports.

Neither have the essential supplies for his diaphragm pacer or the equipment needed to make his continuous humidification mobile.

We purchase, maintain, troubleshoot, and replace these items because Alex needs them.

And here’s what I want people to understand.

When a family successfully prevents a crisis, the system may never recognize the need that family just met.

The equipment worked. The person remained safe. The outing continued.

On paper, everything may appear fine.

But what isn’t visible is the preparation, expense, problem-solving, and responsibility required to make that outcome possible.

Now imagine a person who doesn’t have someone available to purchase the replacements, maintain backups, or troubleshoot when something fails.

What happens to their ability to live safely in the community?

I recognize that public systems have rules, funding requirements, and processes that employees must follow.

But we also need to ask whether those processes can respond to the realities of the people they are intended to support.

A process can be followed correctly and still leave a critical need unmet.

And when that happens, who is responsible for finding a workable solution?

The goal should not simply be to complete the paperwork, follow the procedure, or identify which funding source says no.

The goal should be to ensure that the person can continue living safely, with dignity, independence, and meaningful access to their community.

The process is supposed to serve the person.

The person should not have to fit their life around the limitations of the process.

Because behind every assessment, authorization, funding decision, and service plan is a real human being.

And that human being’s life is happening right now!