We often talk about work requirements in very simple terms. We talk about whether someone is working, how many hours they are working, and whether they should be required to work in order to maintain Medicaid coverage. What I think we need to talk about more honestly is what happens when the reason a parent cannot maintain traditional employment is because they are already working—caring for a child with significant medical needs. I know what that looks like because I lived i

Written by Tomiyo Williams

Last week was incredibly productive, but also one of the busiest and most exhausting weeks I’ve had in a long time. I really had very little downtime. I was working 8–12 hours a day on my book, and by Friday I was so fatigued that I honestly felt disconnected and completely zoned out. I did finally get out to the movies super late last night with a friend, which was definitely needed. But let me tell y’all what I’ve been working on. I FINISHED THE REWRITE OF MY BOOK! 🎉 As m

For the past several years, one of the questions I've been asked the most is, "How's the book coming?" My answer was almost always, "I'm still working on it." The truth is, I actually finished the first draft quite a while ago, but after I read it, I knew something wasn't right. It told the story, but it didn't tell our story. The first draft was very clinical. It focused on diagnoses, surgeries, medications, procedures, and everything we had been through medically. While all

If you have a child on Medicaid, I want to introduce you to something you may have never heard of. It's called EPSDT—Early and Periodic Screening, Diagnostic, and Treatment. The name is long, technical, and easy to overlook. But for families raising medically complex children, it may be one of the most important protections in the entire Medicaid program. When you're caring for a child with complex medical needs, your life often becomes a series of insurance approvals, prior

The Essential Caregivers Act: A Call for Family Inclusion in Healthcare When my daughter was hospitalized, I wasn't there simply to keep her company. I was there because I knew her better than anyone else. I knew her medical history without opening a chart. I recognized subtle changes in her condition before monitors did. I could explain what had worked in the past, what hadn't, and what her care team needed to know to make informed decisions. Like countless parents of medica

I recently read an article about pediatric care deserts and the growing number of families across the country struggling to access pediatric healthcare. The article made an important point: Simply adding more doctors will not solve the problem. We also need to rethink how pediatric healthcare is delivered to children and families. As a parent who raised a medically complex child, the article stayed with me. I want to be clear: Pediatric care deserts were not part of my person

Today, my daughter, Skye, turns 25, and while I'm celebrating the incredible woman she has become, this birthday carries a deeper meaning for me. Skye is the reason I do what I do in the legislative healthcare space. Every policy I advocate for, and every conversation I have about access to care, insurance reform, and patient protections is rooted in our family's lived experience. Healthcare has never been an abstract policy issue to me....it has always been very personal. As

People often ask me how I became so passionate about healthcare advocacy. The reality is, I never planned to be here. I wasn't looking for a career in advocacy or thinking about influencing healthcare policy. I was simply a regular mother trying to help her daughter survive. When my daughter, Skye, was diagnosed with inflammatory bowel disease at just 14 years old, our lives changed overnight. Every decision suddenly became a medical decision. Could she eat that? Would there

When my daughter, Skye, was diagnosed with inflammatory bowel disease at just 14 years old, our world changed overnight. Every decision suddenly revolved around her health. Could she eat that? Would there be a bathroom nearby? What if she had a flare? What if she needed the hospital? Those questions became the soundtrack of our lives. Before I knew it, fear had quietly taken something else from us—it took our vacations. The Impact of Fear on Our Lives For years after her diag

As parents of medically complex children, we become experts in things we never asked to learn. We learn medical terminology. We memorize medication schedules. We become insurance specialists, care coordinators, record keepers, and fierce advocates—all while trying to be Mom or Dad. For many of us, advocating for our children feels like a full-time job on top of the job we already have. So, when people hear the words "artificial intelligence" or "AI," they often have one of tw

This week, the Trump administration announced plans to move special education oversight and civil rights enforcement out of the Department of Education and into other federal agencies. As both a parent and an advocate, I have concerns. When discussions like this happen in Washington, they often sound like administrative changes or government restructuring. But for families raising children with disabilities, chronic illnesses, and complex medical needs, these decisions have r

As August rolls around, many families prepare for the new school year. For parents and caregivers of children with medical complexities, this time brings extra layers of planning and questions. Navigating the world of special education can feel overwhelming, especially when it comes to understanding the differences between an Individualized Education Program (IEP), a 504 Plan, and a Mobility IEP. I want to share what I’ve learned on this journey, hoping it helps you feel more

Navigating the healthcare system can be a daunting task, especially for parents advocating for their children. This blog post shares the inspiring journey of a mother who faced numerous challenges while ensuring her child's health and well-being. Through her story, we will explore the importance of advocacy in healthcare, the obstacles she encountered, and the lessons learned along the way. Understanding Healthcare Advocacy Healthcare advocacy involves supporting and promotin

Navigating the world of healthcare can often feel overwhelming, especially for families dealing with complex medical conditions. The intricacies of medical terminology, treatment options, and the emotional toll of illness can create a daunting landscape. However, families can find strength and support by working together and utilizing available resources. This blog post aims to provide practical strategies and insights for families facing medical complexities, empowering them

Navigating the world of medically complex children can feel overwhelming for parents and caregivers. The challenges are numerous, from managing appointments with various specialists to ensuring that your child receives the best possible care. However, one of the most valuable resources available to families in this situation is community support. Finding a network of understanding individuals can make a significant difference in your journey. In this blog post, we will explor