Care notebook and paperwork toolkit

Keep copies of formal diagnoses, specialist reports, developmental assessments, and any summary documents that explain the person's condition.

Physical therapy, occupational therapy, speech therapy, feeding therapy, behavioral therapy, and other evaluations can help show functional need.

Prescriptions are often required for equipment, therapies, supplies, and some home-based services.

Letters of medical necessity are often central to equipment requests, skilled nursing requests, home modifications, and appeals.

Approval letters, renewal notices, eligibility notices, waiver notices, and managed care letters should all be kept together.

Denial letters should be saved in full, including all pages. They explain the reason, deadline for appeal, and the process for review.

Keep copies of prior authorization requests, supporting attachments, and any response letters.

School and early intervention records can be important outside of education settings as well.

Keep a current list of doctors, therapists, case managers, service coordinators, equipment vendors, and school contacts.

A simple log with date, name, phone number, program, summary, reference number, and next expected step.

A care notebook does not need to be perfect. Some families prefer a binder, others prefer digital folders. What matters most is that records can be found quickly.

The documents that matter most may vary by state, program, diagnosis, insurer, and level of need.