For children with special health care needs, the line between stability and crisis is razor-thin. A quiet day at home can quickly spiral into an unplanned hospital admission. Even during moments of calm, families live with constant anxiety that a small change in condition could trigger the next emergency.
It shouldn’t be that way.
Time at home should be safe and supported, not a fragile pause between hospitalizations. Yet today’s healthcare system still defaults to crisis response, especially for children with special healthcare needs. That’s largely because families face persistent barriers to access, limited resources and, too often, a lack of recognition as trusted partners in care.
20% of U.S. children – approximately 14.5 million – have special health care needs, and yet they account for nearly 50% of all pediatric health spending. That imbalance reflects a system built to react, not to support. It’s even more stark for children receiving Medicaid, where accessing essential services remains a constant challenge.
The prevailing fee-for-service (FFS) payment model cannot deliver the highly personalized, immediately responsive care that families need. And because FFS models reimburse for services rather than outcomes, there is a gap when it comes to building innovative care models and engagement platforms for improved outcomes.
As clinicians, we know this model is broken. We see preventable hospital admissions, fragmented care, and missed chances to intervene early. These children need data-driven, proactive, fully integrated care that is available 24/7. But the current system primarily offers two limited options: hard-to-get, in-office appointments or the emergency room. Families are left without the tools or access to keep their children stable at home.
Partnering with families
Caregiving can be a lonely, exhausting job. While at home, caregivers can feel that they and the child are alone in the world and that the only way to get help is to travel to a healthcare facility where the providers might not have a full view of the child’s medical history or social determinants of health. As a result, many children get stuck cycling from inadequate home care to emergency care back to home, where the process repeats itself. It takes a heavy toll by worsening outcomes for children and their caregivers, who might feel they are within a failed system of support.
One mother of two children with special health care needs recently shared that, after years of cycling through emergency department visits and hospital admissions, access to 24/7 integrated virtual and in-home care finally broke that pattern. With support delivered where and when it was needed most, her family is experiencing stability for the first time in more than a decade – no emergency visits, no inpatient stays, just safer days at home.
These families aren’t asking for miracles. They’re asking to be heard, trusted, and equipped to care for their children. That requires care that’s easy to engage – medical, behavioral, and social support delivered in a coordinated, personalized, and culturally-competent way.
With a care model that provides both acute and longitudinal care, 24/7 right from home, and specialized patient population programming, caregivers can secure the integrated care needed for their children while also receiving help with finding specialists, making appointments, and completing paperwork. This kind of support handles referrals, expedites prior authorizations, and coordinates medication and equipment, all in collaboration with the patient’s health plan and existing team of doctors and specialists. It connects the patient to services like palliative care or better access to a pharmacist or dietitian who knows the child and their unique needs.
Using tech for better care
Upstream investment in population health and risk stratification technology offers a rich return in lower costs, better outcomes and averted crises, especially when that technology supports a multidisciplinary virtual and in-home care team. Deeply data-driven care enables proactive care.
That’s the case with care for children with special health needs. With this population, information arrives from so many sources, including hospitals, primary care providers, specialists, therapists, health plans, and the caregivers themselves. Smart technology can integrate and interpret these fragmented data streams, transforming them into real-time, actionable insights for the care team. And when these insights are used to provide predictive and proactive care, on-demand alongside the caregiver and other team members through virtual and in-home models, we improve access and build trust with the family.
This isn’t just about smarter data and technology. It’s about operationalizing insights to drive timely, whole-person care in complex pediatric cases. It helps the team see the full picture of what is needed to deliver the best care possible and act on it in real time.
Choosing a better path
We know what works. Value-based care offers a better path. When care teams are digitally-enabled, guided by real-time data, and built to act before a crisis, they can meet families where they are. Integrated care – virtual and in-person – can proactively manage medical, behavioral, and social needs while building trust and reducing emergency utilization. This model doesn’t replace the child’s providers. It strengthens the care ecosystem around them.
Success isn’t just about fewer hospitalizations or lower readmissions. It’s about whole-child care that results in safer days at home. When caregivers are empowered, when home becomes a place of stability and healing, we see meaningful change.
This is how specialized pediatric care should work.
Every day we delay, families pay the price. The tools are here. The models are proven. What’s needed now is action and a shared commitment from providers, payers, and policymakers to build a system that truly supports children with special health care needs.
Let’s stop starting care at the point of crisis. Let’s build something better, one safe day at a time.
About Dr. Patricia Hayes
Dr. Patricia Hayes is a double board-certified physician who oversees the implementation, growth, delivery and continuous improvement of the Imagine Pediatrics clinical care model. As part of her role as Chief Medical Officer at Imagine Pediatrics, she oversees a multidisciplinary medical team to ensure that high-quality, safe, and equitable care is provided to every patient in every interaction with Imagine Pediatrics. An experienced physician executive, Dr. Hayes previously served as Executive Vice President and Chief Medical Officer for Avenue 360 Health and Wellness, a Federally Qualified Health Center (FQHC) committed to serving traditionally underserved communities that experience health inequities. Before that, Dr. Hayes served as the Texas Market Medical Director for CenterWell Senior Primary Care, which serves the healthcare needs of seniors in 14 plus states.
While at CenterWell, she oversaw providers in the delivery of the organization’s value-based care model. Dr. Hayes also served as Medical Director for the Department of Family Practice at Legacy Community Health, the largest FQHC in Texas, overseeing clinical operations of all family practice sites throughout Houston and southeast Texas — spanning five clinical specialties, including internal medicine, pediatrics, infectious disease, geriatrics, and endocrinology. Dr. Hayes is board certified in internal medicine and pediatrics by the American Board of Internal Medicine and American Board of Pediatrics. She earned her medical degree from the University of Texas Health Science Center at Houston and completed her residency in internal medicine and pediatrics at Baylor College of Medicine.
