My son Jude is 18 months old, and his life depends on skilled medical care every single day.

Jude began his medical journey at just 13 days old. Since then, he has been diagnosed with tracheomalacia, laryngomalacia, oropharyngeal dysphagia, chronic lung disease, chronic aspiration, Chiari malformation, and developmental delay.

At just three months old, he was admitted to the PICU for respiratory failure and required life-saving intervention. Since birth, he has had multiple surgeries and now relies on a feeding tube because it is not safe for him to eat by mouth.

Jude cannot go to daycare. He cannot be watched by a regular babysitter. Because of his airway issues and risk of aspiration, he requires constant monitoring by someone who is medically trained.

He is followed by multiple specialists at Texas Children’s Hospital and has frequent hospital visits, emergency room trips, and therapies every week.

Jude is approved for Private Duty Nursing through Medicaid because his care is medically necessary.

But when a nurse does not show up, the responsibility falls entirely on me.

As both his mother and a licensed pediatric nurse, I step in and provide that care. But under current Texas policy, I cannot be reimbursed for doing so, even though I am fully qualified and the care is already approved.

This is not just my situation. This is happening to families across Texas.

Texas is failing its most medically fragile children and the nurses who are trained to care for them.

Children who qualify for Medicaid Private Duty Nursing are among the most vulnerable. They require continuous, skilled medical care to stay alive and out of the hospital.

Across Texas, there is a severe nursing shortage. Shifts go unfilled every day. When that happens, families are left without the care their children depend on.

At the same time, Texas Medicaid prohibits licensed parents, including LVNs and RNs, from being paid to provide this exact care to their own children, even when those services are already approved and funded.

This creates a system where medically fragile children go without care, parents are forced to perform skilled medical care without compensation, and licensed nurses are pulled out of the workforce. When a nurse parent has to stay home, another patient loses care too.

Yes, these are our children, but their needs go far beyond typical childcare.

These children cannot attend daycare or be safely left with a babysitter. They require constant monitoring by medically trained professionals due to risks like respiratory failure, aspiration, seizures, and other life-threatening complications. Their care is not optional. It is continuous and medically necessary.

Over time, this policy does more than cause missed shifts. It forces parents, many of whom are trained healthcare professionals, out of their careers entirely. These are not parents choosing to stay home. They are being pushed out of the workforce by a policy that makes it impossible to stay employed.

In today’s economy, most families rely on two working parents. For families like ours, Texas policy forces one parent out of the workforce, not because they lack skill, but because the system does not allow them to use it.

Other states have already recognized this issue. Louisiana allows parents to serve as paid caregivers under Medicaid programs. This shows that it can be done safely while supporting both families and the healthcare system.

Texas is falling behind.

We are calling on the Texas Health and Human Services Commission and state lawmakers to allow licensed parents to provide reimbursable Private Duty Nursing for their own children when those children are already approved for these services.

This change would help ensure children receive consistent, life-sustaining care, reduce preventable hospital visits, keep licensed nurses in the workforce, and support families in a two-income economy, all while staying within existing Medicaid funding.

Texas already recognizes that these children need skilled nursing care.
It is time to allow qualified parents to provide it.