Chaotic by Default: How Families Actually Coordinate Care

Ask a family coordinating care across multiple providers how they keep everyone on the same page, and most of them will give you a version of the same answer.

They don't.

We asked. In our March 2026 family survey, the dominant answer was some version of "nothing formal. It's chaotic." Not that families wished coordination were better. There is no system at all.

That answer landed hard on us. Not because it was surprising, but because it confirmed what we had been hearing in conversations for months: the families doing the hardest work have the fewest tools designed for how they actually live.

The average care team has 4-5 people. That typically includes parents, grandparents, an ABA therapist, a school teacher or aide, and often a speech or occupational therapist. Each of those people holds a piece of the picture. None of them holds the whole thing. And the person who comes closest, almost always a parent, spends an enormous amount of energy keeping the pieces from scattering.

A 2022 NIH qualitative study on barriers to primary care for autistic adults captured this in a single sentence from a parent: "You have to ask for everything, and you have to prepare everything. But still, sometimes if you prepare ahead of time, they don't have the people that will help you."

The preparation burden falls entirely on the family. The knowledge exists, but there is no portable, shareable place for it.

The new-provider treadmill

When we asked families what happens when a new provider or caregiver enters their lives, the most common answer was, "I have to explain everything from scratch every time." Others said, "I just hope for the best."

Most families we spoke with are entering every new care relationship without a reliable way to transfer the most important context about their child or family member.

The problem is not a lack of effort. It is a lack of infrastructure. Families are running a coordination operation that would overwhelm a project manager, using tools that were never designed for it: group texts, verbal handoffs, a thick binder on the kitchen counter, and sheer memory.

A 2025 qualitative study published in Public Health documented the same pattern at a policy level. Despite national efforts to improve autism care pathways, families continue to navigate siloed organizations on their own, with providers focused on available slots rather than continuous, coordinated care. The researchers described a system where parental expertise becomes the only buffer against fragmentation, which is an academic way of saying that the parent is the system.

"It's not the autism. It's the paperwork of autism."

That line comes from a parent named Olivia, quoted in a 2025 NIH study on the transition to adulthood for autistic individuals. It is one of the clearest articulations of the problem we have encountered in any research.

The family is not overwhelmed by their child. They are overwhelmed by the administrative burden of coordinating care across a fragmented system. The villain is not the diagnosis. The villain is the absence of shared context.

This is where we think the conversation about "care coordination" gets it wrong most of the time. The phrase conjures images of case managers, referral systems, insurance pre-authorizations. Those matter. But for most families, the coordination problem is far more basic: When a new therapist walks in on Monday, do they know what happened last week? When grandma picks up from school, does she know the morning was hard? When a respite worker arrives for the evening, do they know which medications are OK to give?

Right now, the answer is usually no. The information exists, but it lives in one person's head.

What this means for what we are building

Carevazo started from a specific belief: that the smallest, most consequential unit of care coordination is the handoff. The moment when one person who knows something important about a care recipient transfers that knowledge to someone who needs it.

Most of the time, that transfer fails. Not because people do not care, but because there is no infrastructure for it. No shared profile. No structured way to say, "Here is what you need to know before you walk in."

We are building that infrastructure. A profile that lives with the person being cared for and travels across providers, schools, and life transitions. A record that a family owns and a care team can access with consent.

We are not building a cure for coordination chaos. We are building the foundation that makes coordination possible in the first place.

If what we have described sounds like your household, we are in early access in Arizona and would like to hear from you. You can follow our progress on this blog or sign up for updates on our homepage.