I watched the technicians install a small car bed for his twin sister in the back seat next to the car seat. They secured a portable oxygen tank and stabilized their son in position. After what felt like a lifetime in the hospital, we were finally going home. A few months ago, at 30 weeks pregnant, I nearly died from a brain hemorrhage and my twins were thrust into a world they were not prepared for.
As we left the car, I glanced back at my son. A feeding tube and oxygen cannula were placed in his cheek. You must have felt a sense of relief. Instead, I was terrified, still recovering from my own brain injury, and living with double vision and a kind of fatigue that I can’t even describe. We didn’t know that surviving the hospital was just the beginning and that no one would give us a roadmap for what would happen next.
My son suffered a massive stroke shortly after birth, leaving him with cerebral palsy and hemiplegia. A few years later, he was diagnosed with drug-resistant epilepsy. Children like my son make up less than 1% of children in the United States, but they account for more than a third of pediatric health care costs. Our calendars quickly filled up with treatments and specialist appointments across two children’s hospitals. Every professional has added another appointment to their calendar. No one told me how to get through it all.
“We didn’t understand the full scope of what was available.”
The survey found that 68% of families of medically non-complex children reported having unmet care coordination needs nationally, compared to 40% of families of non-medically complex children.
Our pediatrician referred us to the Early Start Program, the state’s early intervention program for infants and toddlers with developmental delays, through California’s regional center system. The system serves nearly half a million people through 21 regional centers across the state, but operating the system remained one of the biggest challenges.
At the time, we didn’t understand the full scope of what was available. Early Start felt like a beginning, but no one explained what would happen after it ended. At age 3, we were told that our son would be transferred to a different school district, so that’s where we focused our energy. This has led to more appointments and assessments, but no roadmap yet.
When we moved to a new town, I asked our new pediatrician if he could help us figure out what services we were eligible for. I was told that there is no one in the company who specializes in this, and that I had been so busy with my responsibilities that I had forgotten about it.
Although we are highly educated, knowledge has never been a barrier. There was capacity. Families of children with complex medical conditions spend a median of 2 hours per week just coordinating care, in addition to 11 to 15 hours of direct home care. More than half report that a family member had to quit their job because of it.
“She gave me a road map.”
We learned about the intensive treatment program at Napa Center in Los Angeles. It was 3 weeks, 5 days a week, 4 hours a day, and was not covered by insurance until I asked for a gap exception. We relocated our family so he could join us. It was the most difficult part of parenting I have ever experienced.
We are back for the first time in 3 years. For the first year, I hardly talked to anyone. In the second year, he opened up to me. That decision changed everything.
I met Michaela King in the break room. She was the mother of four children. Her sons were twins who also had cerebral palsy and epilepsy. She understood not only the medical complexities of our lives, but also the feelings of fatigue, isolation, and the constant feeling that there was another question we should be asking. She wasn’t a caseworker. She was not a coordinator. She was also an exhausted mother, doing the work that the system should already be doing for both of us.
She took me under her wing and taught me about programs I didn’t know existed, including In-Home Support Services (IHSS), Regional Centers, Medicaid Waivers, and Self-Determination Programs.
But what she gave me was more than information. She gave me a road map. Without her, I don’t know how much longer I would have lived. California invests billions of dollars each year in developmental disability services, and I am grateful to live in a place that invests so much. However, unconnected investments lead to failure in and of themselves. Families here continue to be approved for more services than they receive, and the gap is widening, especially for Black and Pacific Islander children. If California, which has invested more than most states, is still unable to reliably connect families with support, the situation in other states is almost certainly getting worse.
“Mom becomes the navigator”
Mom becomes the navigator. It’s almost always the mother, not because the father or partner isn’t there or isn’t trying, but because the unpaid work of connecting the dots of care is treated as an instinct, something we’re expected to know, not something the system is built to provide. Every specialist we saw treated our son. No one helped me put the rest together. Since no one else claimed it, that task fell to me and Mihaela.
If you are one of these families, ask by name who your care coordinator is before you leave the hospital. Please write it down. Don’t accept silence as the default. Build a community around kids and find your Mihaela.
No family should rely on asking the right questions at the right time or meeting the right mom in the break room. This cannot be left to national institutions alone. The hospitals, pediatricians, and specialists who fill a family’s calendar are part of the health journey of a child with a disability and keep families off the road. They should be asked to help plan a course, not just fill out a calendar. That means enrolling eligible families in coordinated care before hospital discharge in every state, so connecting dots on a map isn’t left to chance or left to exhausted parents to do alone.
Danielle (Dee) Stevens is a mother, stroke survivor, communications leader, and disability advocate. After her son was born with cerebral palsy, hemiplegia and drug-resistant epilepsy, the family spent years navigating the complex medical and disability systems. She lives in Northern California with her family. Learn more about her here.
