Family Caregiver
I am not a fan of politics, and I do not generally view issues through a political lens. However, yesterday’s actions provide an opportunity for an important discussion and raise some thoughtful questions.
And yes, I am currently a paid provider for my son, Alex.
I have cared for Alex since he first came home after his car accident in 2004. For most of those years, I was not paid.
In fact, I was Alex’s sole caregiver for more than 17 years.
Wherever he went, I went.
Helicopter rides to Cleveland.
Hospital admissions.
Doctor appointments.
School.
Therapy.
Community outings.
Emergency room visits.
Even my own medical appointments often involved bringing Alex with me because there was no one else.
That is a lot of 24/7/365 time together.
A lot of lived reality.
A lot of learning.
A lot of successes, setbacks, crises, recoveries, and ordinary days.
One of the things I have learned through this journey is that there is often a significant difference between policy discussions and lived reality.
For years, we have heard about the direct care workforce shortage.
The shortage is not new.
In many places, it has grown worse.
Reports have been written.
Task forces have been formed.
Studies have been conducted.
Yet families across the country continue asking the same question:
Who is going to help?
In many situations, the answer has been family.
Not because that was always the plan.
Not because families necessarily sought that role.
But because there was no one else.
In the research I have done, it appears that even from the early days of Home and Community-Based Services (HCBS), there were not enough providers to fully meet the need. Families often stepped into the gap.
We experienced that shortage firsthand in 2005.
Alex was being transported home by ambulance after his hospitalization. The home care agency had assured the case worker that staffing was in place.
While we were on the way home, we were informed there would be no nurse that night.
That was our introduction to the workforce shortage.
So families learned.
They learned complex equipment.
They learned medical routines.
They learned emergency responses.
They learned how to recognize subtle changes that could prevent serious complications.
They became the continuity that allowed community living to succeed.
The question is not whether family members should automatically become providers.
The question is whether a willing, capable, knowledgeable caregiver suddenly becomes less valuable simply because they are related.
In Alex’s case, continuity has been one of the most important contributors to long-term stability.
That continuity did not appear overnight.
It was built through years of observation, learning, adaptation, experience, and a relentless desire to understand.
I read records.
I studied his injuries.
I asked questions.
I sought out expertise.
I learned from physicians, nurses, therapists, respiratory therapists, researchers, and most importantly, from Alex himself.
The relationship did not erase the expertise.
If anything, it helped create it.
As medically complex individuals increasingly live long, productive lives in the community, we may need to ask whether policies are keeping pace with reality.
The workforce shortage is real.
The complexity is real.
The need for continuity is real.
And perhaps one of the most important questions is this:
If a family member is willing, capable, trained, experienced, and providing care that would otherwise go unfilled, what problem is solved by excluding them solely because they are family?
I cannot “un-family” Alex.
So am I suddenly deemed unqualified because I am his mother?
If so, does that mean someone with far less knowledge and experience automatically becomes more qualified simply because they are not related?
Is that safer?
Is that wiser?
Is that better?
Those are questions worth thinking about.
Because the goal should not be preserving a category.
The goal should be preserving successful community living.
And for many families, that success has depended on family members stepping forward when no one else could.
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