Home is where my son belongs

When I walked into Legislative Hall to testify before Delaware’s Joint Finance Committee, I wasn't there as a policy expert or a lobbyist; I was there as a mom – a mom who wakes up every day thinking about how to keep her child safe, healthy and at home.

My son Hunter is 3 years old. He lives with the lifelong effects of a traumatic brain injury caused by shaken baby syndrome. He has epilepsy, cerebral palsy and is legally blind. He requires skilled nursing care to monitor seizures, manage medications and g-tube feeds, and help him safely get through each day. His skilled nursing team also allows him to go to school and receive essential physical therapies that help him continue to make strides. Without that care, his health – and his life – are at risk.

Hunter is also an adopted child. My husband and I chose to open our home and our hearts to children who have already endured more than most adults ever will. We did so knowing the road would be hard. What we didn’t expect was that, on top of the medical challenges, we would have to constantly fight to prove that our child deserves to stay at home.

Like many Delaware families, we are a working household. I am a full-time special education teacher, and my husband is an emergency response coordinator and volunteer firefighter. We both serve our community in demanding, public-facing roles built on care and responsibility. We want to work. We need to work. And with the right supports in place, we can.

Home care is what makes that possible.

Home is where Hunter belongs. It’s where he experiences love, care, comfort and stability after a traumatic start to life. It’s where his younger adopted brother learns what love, patience and resilience look like. Without consistent home care, our family’s entire balance falls apart – not because we aren’t willing to do the work, but because no family can safely do this alone.

I want to be clear: Delaware has made meaningful investments in home care in recent years, and families like mine are grateful for that progress. Those investments matter. They have helped stabilize care for many people and show that lawmakers understand the value of keeping residents at home. But the reality is that the industry still lags behind, and the workforce shortage remains unresolved.

Like many families across the state, we’ve experienced reductions in nursing hours that have left us scrambling to fill dangerous gaps in care. These decisions don’t just affect schedules, they also affect sleep, safety and survival. When hours are cut, parents step in overnight, juggle full-time jobs with caregiving, and live in a constant state of exhaustion and fear.

But the issue goes beyond hours on a page.

Even when care is authorized, there simply aren’t enough nurses to go around. Because of the severe workforce shortage, agencies are often forced to assign their most-experienced nurses to the most medically complex children – a decision I understand, but one that comes at a cost. My son’s condition may be labeled less acute on paper, but his needs are still serious, unpredictable and sometimes life-threatening. When less-experienced nurses are placed on his case, his care – and his safety – can be jeopardized.

This is not a failure of nurses or providers; it is the result of a system that, despite recent progress, still underinvests in home care and struggles to compete for skilled professionals.

Private-duty nursing and personal care services are what allow medically fragile children to live at home instead of in hospitals or institutions. They allow parents like us to continue working, contributing to our communities and supporting our families. Delaware’s recent investments have helped, but they have not gone far enough to stabilize the workforce or ensure reliable access to care for every family who needs it.

I testified not because I want sympathy, but because I want understanding.

I want legislators to understand that when home care is unstable, families suffer in ways that never show up in a budget line. Children miss school because they cannot attend without a nurse. Parents risk losing jobs because they are forced to provide round-the-clock care. Families are pushed to the brink – not because care isn’t needed, but because the system hasn’t fully invested in sustaining it.

Delaware has an opportunity to build on the progress it has already made.

By continuing to invest in home care programs like private-duty nursing and personal care services, lawmakers can strengthen the workforce, improve continuity of care and ensure that working families like mine can keep their children safe at home.

When I testified, I was speaking for Hunter. I was also speaking for countless families who are working, trying and doing everything right – yet still struggling to hold it all together.

All we are asking for is the chance to keep our children where they belong – at home, surrounded by family, dignity and care. After everything children like mine have already endured, that should not be too much to ask.