Caregiver Support
Care Coordination for Autism Families: A Practical System
The short answer
Care coordination means keeping every person supporting a child working from the same current information. For autism families it usually involves one record of providers and documents, a consistent way to share updates across therapy, school, and home, a simple appointment-prep routine, and progress notes captured over time rather than reconstructed from memory.
Why this is hard, and why it is not your fault
A typical autism care team involves a pediatrician, one to four therapists, a school team, sometimes a state program coordinator, and several caregivers across households. None of those systems talk to each other. Health research on care coordination has long described this gap: fragmentation across providers is a known structural problem, and families end up as the only ones holding the full picture.
The practical consequence is that the same story gets retold a dozen times, patterns get missed because nobody sees all the data, and decisions get made from partial information.
The four-part system
- One record of people. Every provider: name, role, organization, phone, portal, and what they handle. Update it the day something changes.
- One record of documents. Evaluation reports, IEPs, IFSPs, authorization letters, denial letters, therapy progress reports. Name files consistently, for example 2026-08-22-speech-progress-report.
- One shared update habit. A short, factual weekly note that goes to everyone who needs it: what changed, what worked, what did not.
- One running timeline. Sleep, food, school days, meltdowns, wins, and medication or therapy changes, logged briefly as they happen.
Appointment prep that takes five minutes
- The one thing you most need from this appointment, written as a single sentence.
- What has changed since last time, in three bullets.
- Your two or three questions, written down before you walk in.
- Any relevant data: a week of sleep times, a photo of the behavior log, the most recent progress report.
- After the appointment, two lines: what was decided, and who is doing what by when.
That last line is the one families most often skip and most often need. Decisions made verbally in a fifteen-minute visit disappear within a week.
Keeping multiple caregivers aligned
Grandparents, co-parents across two households, aides, babysitters, and school staff all need a subset of the same information, not all of it. Deciding deliberately who needs what prevents both information gaps and privacy problems.
| Who | Usually needs | Usually does not need |
|---|---|---|
| Co-parent | Everything: full records, decisions, appointments | — |
| Grandparent or regular sitter | Routines, sensory needs, calm-down strategies, emergency contacts | Full clinical reports |
| Therapist | Goals, related therapy notes, what is happening at home | Unrelated medical history |
| School team | Accommodations, communication supports, safety information | Detailed therapy billing records |
| Occasional sitter | One page: routine, what helps, what to avoid, who to call | Diagnostic history |
Where BASE fits
This system works on paper, in a shared drive, or in a notebook, and plenty of families run it that way successfully. BASE exists because keeping it current by hand across a whole care team is the part that breaks down: it brings the record, the shared updates, the timeline, and the care team into one place so the pattern is visible without anyone reconstructing it. If that is the part you are struggling with, joining the Founding Families is how to get early access.
Frequently asked questions
- What is care coordination?
- Organizing a person's care activities and sharing information among everyone involved so that care is safer and more effective. For families it means the practical work of keeping providers, school, and home aligned.
- How long should I keep records?
- Keep evaluation reports, IEPs, and authorization or denial letters indefinitely. They are routinely requested years later for services, appeals, and adult transition planning.
- Who should own coordination in a family?
- Usually one person maintains the record, but the information should be accessible to every adult who needs it, so that nothing depends on one person being reachable.
Sources
- Care coordination — Agency for Healthcare Research and Quality (AHRQ)
- Care coordination and the medical home for children with special health care needs — American Academy of Pediatrics, HealthyChildren.org
- Respite care and caregiver support — ARCH National Respite Network
About the author
Shanaé MurraineLived experience
Co-founder, BASE
Shanaé Murraine is a co-founder of BASE and a parent navigating autism care coordination. She focuses on how families organize records, track progress over time, and prepare for appointments and meetings.
This guide has not been reviewed by an outside clinician. It is written from lived caregiving experience and cites the primary sources listed above so you can verify every detail yourself.