Getting started
Just diagnosed: a 90-day roadmap for parents
A new diagnosis rearranges everything: schedules, finances, friendships, sleep. This roadmap walks through the first 90 days in the order most parents in our community wish they'd tackled things — starting with what to do this week, and ending with the systems that will carry you through the next year.
Week 1: breathe, then gather documents
You do not have to make any decisions this week. Your only job is to slow down and collect what you already have.
- Ask for the written diagnostic report and any test results in your patient portal.
- Save a PDF of your insurance card (front and back) and your child's Social Security card.
- Start one folder — physical or digital — labeled with your child's name and year.
- Tell one person you trust. You do not have to tell everyone yet.
Weeks 2–4: request an evaluation
For children under age 3, contact your state's Early Intervention program (mandated by Part C of IDEA). For children 3 and older, request an initial special-education evaluation in writing from your school district. Both are free, and the request starts a legal timeline.
Send the request by email so you have a date stamp. A simple version: "I am requesting a full initial evaluation for my child, [name], under IDEA. Please confirm receipt and next steps." The district generally has 60 calendar days (state rules vary) to complete the evaluation.
Weeks 4–8: insurance, referrals, and a care binder
Call the member-services number on your insurance card and ask three questions:
- Which of my child's diagnoses are covered for therapy?
- Do I need a referral or prior authorization for [speech / OT / PT / ABA / mental health]?
- What is my in-network deductible and out-of-pocket maximum for the year?
Set up a simple care binder with tabs for: diagnostic reports, evaluations, IEP/IFSP, insurance letters, provider notes, and a running log. A cheap 1-inch binder beats a perfect system you never use.
Weeks 8–12: build your team and find your people
By now you likely have evaluation results and a shortlist of recommended services. Interview two or three providers before committing — ask about waitlists, cancellation policies, parent involvement, and how they share progress.
Just as important: find at least one parent community. A diagnosis-specific nonprofit, a local Facebook group, or a monthly meetup gives you the shortcut every new question needs. See our support groups guide for vetted starting points.
Common mistakes in the first 90 days
- Accepting every therapy at once. Two or three well-attended sessions beat five you cancel.
- Verbal-only requests to the school. Always follow up in writing.
- Skipping Medicaid because "we make too much." Many states offer disability-based Medicaid or waivers regardless of income — see our benefits guide.
- Trying to do this alone. Ask one friend to become your "logistics buddy" who helps track appointments.
Free things you can do today
- Email your school district requesting an initial evaluation.
- Call Early Intervention if your child is under 3.
- Apply for a state Medicaid waiver — waitlists can be years long, so start the clock.
- Follow one national organization for your child's diagnosis and subscribe to their newsletter.
Frequently asked questions
Do I need to accept every therapy that's recommended?
No. Prioritize the therapies most connected to your child's daily functioning and what your family can realistically attend. You can always add services later; consistency matters more than volume.
How do I request Early Intervention?
Search '[your state] Early Intervention' or call 211. You can self-refer — no doctor's note required. Evaluations are free regardless of income and result in an Individualized Family Service Plan (IFSP) if your child qualifies.
What if we can't afford therapy?
Ask each provider about sliding-scale fees, university training clinics, and grant-funded programs. Many diagnosis-specific nonprofits offer therapy scholarships. Also check whether your state's Medicaid waiver covers private-pay providers.
Should I tell friends and family right away?
Only when you're ready. Some parents write one short paragraph they can text to close family, then handle broader circles later. You are not obligated to explain your child's diagnosis to anyone.
Community-sourced guidance, not medical or legal advice. Please consult a licensed professional before making decisions about your child's care.
Related guides
Parent Tools
Field-tested scripts, checklists, and templates parents use every week — from scheduling evaluations to insurance appeals.
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IEP & school advocacy guide
How to prepare for eligibility meetings, read a draft IEP, and know when to push back — written by parents who've been through it.
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Financial benefits & funding
Programs that offset the cost of care — Medicaid waivers, ABLE accounts, SSI, respite grants, and tax credits families often miss.
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Find providers other parents trust
Search the community-vetted directory or share a provider that helped your family.