Starr Garcia

My son, Jr., is 18 years old, and we live in Boone County, Kentucky. We waited years for services, never reaching the top of the Michelle P. Waiver before our family entered crisis.

He's now been on the SCL Waiver for almost a year, but we still have not been able to access Personal Centered Coaching or find a Direct Support Professional, so I continue to provide his care 24/7.

Tomorrow my son turns 18. Most parents celebrate this milestone. I'm spending it trying to make sure he doesn't lose the care that keeps him safe.

Next week will be his last dentist appointment as a pediatric patient, meaning we won't have dental care until we come up on the list at a specialty clinic, and then we'll have to travel to Louisville for every appointment. That's two years away, if they stay open.

We're juggling guardianship, adult providers, endless appointments, and trying to figure out where he'll receive care now that he's aging out of Cincinnati Children's. He can remain an outpatient there, but if he has another psychiatric crisis, he cannot be admitted inpatient. That reality keeps me up at night.

We also cannot access ABA therapy because the only provider in our area equipped to meet my son's complex needs does not accept Medicaid. We are on years-long waitlists for specialized psychiatric care, and we cannot find adult dental care that meets his needs.

Cincinnati Children's already doesn't accept Kentucky Medicaid for psychology services, so finding providers has always been incredibly difficult. I've also been unable to secure a DSP or PCC staff through his waiver despite searching for the past year.

My son cannot care for himself. Today at the doctor, I had to help him simply get onto the exam table because he couldn't understand how to position himself. The staff knows him well and patiently helps him, but moments like that remind me just how vulnerable he is.

With the recent Medicaid reimbursement rate reductions, I'm terrified these access problems will only get worse.

So yes, I'm posting constantly about these Medicaid reimbursement cuts. I'm worried about losing services we already struggle to access. I'll continue attending committee meetings, calling legislators, wondering how we're going to make it through the next crisis, and asking why we have to fight this hard for basic healthcare.

At this point, I don't care who gets the credit. I don't care who is to blame. If the funding is there, then everyone needs to come to the table and fix it. Families cannot wait while government points fingers. Every month that passes, providers leave, waitlists grow, and families like mine are left wondering where we'll turn next.

This isn't politics to us. This is my son's life. And when he turns 18, the uncertainty doesn't get smaller. It gets even bigger.

I am asking the Governor and the General Assembly to work together to protect Medicaid funding and the provider workforce.

My son's medications and services are not optional. Please don't let families like mine lose access to the care our loved ones depend on.