There is something sitting heavy in my heart lately.
As I listen to conversations about cutting Medicaid support and limiting compensation for family caregivers, I keep thinking:
Have the people making these decisions ever truly lived this life?
Not studied it.
Not debated it.
Not reduced it to numbers on a spreadsheet.
Lived it.
My sister Paula was born with a disability, and our family’s entire world adjusted around her needs — not because we were forced to, but because we loved her.
We moved homes because we finally found one with a bathroom on the first floor, so she would no longer need carried upstairs.
Wheelchairs gave her mobility and freedom.
My mother cared for Paula through exhaustion, pain, and endless physical demands because that is what families do when someone they love needs support.
And then, eventually, support services entered our lives.
Not luxury.
Not excess.
Not abuse.
Support.
A caregiver walking through the door meant our family could finally take a breath.
Those caregivers became part of our extended family. They brought relief, dignity, consistency, and safety into our home.
So when I hear broad statements about fraud, abuse, and family caregivers not deserving compensation, I wonder:
Where is the humanity in this conversation?
Yes, systems should be accountable.
Yes, fraud should be addressed.
But why does the solution so often fall on the backs of families already carrying unimaginable weight?
Why are individuals with disabilities and the people caring for them made to feel like burdens instead of valued human beings?
Family caregiving is labor.
Physical labor.
Emotional labor.
Financial sacrifice.
Life-altering sacrifice.
Many caregivers leave jobs, lose income, sacrifice retirement savings, experience declining health, and spend years navigating systems that few outsiders truly understand.
And here is the truth many people fail to recognize:
Disability is not “someone else’s issue.”
Any family can enter this world in a single moment.
An accident.
An illness.
A diagnosis.
A stroke.
A tragedy.
A life change no one saw coming.
Support systems do not exist because families are weak.
They exist because families are human.
My sister Paula was not a burden.
She was light.
She was laughter.
She was family.
She was worthy of support, dignity, opportunity, and care.
And so are the families walking this road today.