My son was diagnosed with autism. When he got his diagnosis, nobody handed us a manual. Just paperwork: so much paperwork. And a lot of waiting. In waiting rooms, on waiting lists, waiting for answers nobody seemed to have. I'm an engineer, so when the system failed my son, I did what engineers do: I read the documentation. So I started taking notes. I asked questions. I learned what actually works, what's worth fighting for, and what the bureaucracy doesn't want to tell you. Here's what I found.
What do you need help with?
- My child just got diagnosedGetting a diagnosis, and the first 90 days
- My child is under 3Early Intervention: birth to three
- We're starting schoolIEPs, evaluations, and your rights
- I need moneySSI, Medicaid, waivers, and what you qualify for
- My child is getting olderAges 14 to 26: transition, guardianship, SSI at 18
- I don't understand the wordsThe glossary: jargon decoded
- Somebody told me noHow to disagree: the steps, the deadlines, the free help
- I am looking for somethingSearch every page on the site
- What comes next?The road from birth to 26: every date to put on your calendar
- What are my rights, really?The fine print nobody hands you, with the exact rule
- Where is it written for my state?Your state's parent rights notices and free parent help
- I want something to printPrintable checklists, straight from these pages
- Where do I start?Be in charge: understand it before you say yes
- Explain the hard stuffIEP meetings, SSI deeming, TEFRA, and more, with the rules cited
The Road Map: the route Roy's family actually drove
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Ages 14 to 26
Transition planning, guardianship, SSI at 18, and aging off insurance at 26
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The fine print, one rule at a time
Short pages with the exact rule, the sentence that proves it, and what to say. South Carolina has its own set.
- Be in Charge: Understand It Before You Say YesThe same rule at school and at the doctor: understand it, get it in writing, keep your records.
- If They Say This, Ask This (And If They Do Not Say It, Ask Anyway)What to ask when you hear no, wait, or sign here, and what to ask when nobody says anything.
- South Carolina Fine Print: Free Help, and Who to Call FirstEducation partners, parent mentors, a legal advocacy agency and the state ombudsperson, all free.
- South Carolina Fine Print: What State Law AddsSouth Carolina autism insurance law and its limits, coverage past the age limit, rights at 18, and mediation.
- The Fine Print on Evaluation and DiagnosisYou can ask for an evaluation, the 60 day clock, no single test, and diagnosis versus eligibility.
- The Road From Birth to 26: Dates to Put on Your CalendarEvery date that matters from Early Intervention to age 26, in order, with links.
- Three Traps Nobody Warns You AboutThe diploma that ends services, IEP changes without a meeting, and the Medicaid renewal form.
- South Carolina Fine Print: BabyNet (Early Intervention)BabyNet in South Carolina's own words: refer yourself, free, who qualifies, and what to do if something goes wrong.
- The Fine Print in Early InterventionYou can refer your child, the 45 day clock, what costs nothing, and the move at three.
- South Carolina Fine Print: Diplomas and TransitionTransition planning at 13, the diploma or credential decision, and why the credential keeps services going to 21.
- South Carolina Fine Print: The Scholarship and Your Child's IEPLeaving public school for the scholarship, what happens to the IEP, and what to ask first.
- South Carolina Fine Print: When You Disagree With the SchoolSouth Carolina's ombudsman, free facilitated IEP meetings, free mediation, state complaints and hearings.
- South Carolina Fine Print: Special Education Records Can Be DestroyedThe 45 day notice before special education records are destroyed, and why to get a copy first.
- The Fine Print Nobody Hands You at SchoolA second opinion at the school's expense, records before the meeting, and other rules nobody mentions.
- The Fine Print on Behavior and Discipline at SchoolThe ten day count, services while out, the meeting about the behavior, and support first.
- The Fine Print on Moving With an IEPMoving with an IEP: comparable services right away, an evaluation if needed, and the records.
- The IEP Meeting, Decoded: Who Gets a Chair at the TableWho must be in the room, who you can bring, and how often the meeting has to happen.
- Why Your Paycheck Counts Against Your Child (Until They Turn 18)Why a parent's paycheck can block a child's SSI, what is left out, and when it ends.
- South Carolina Fine Print: ABA Therapy and MedicaidMedicaid covers ABA to age 21, the diagnosis report required, who gets the approval, and the waitlist.
- South Carolina Fine Print: Medicaid, Waivers and Katie BeckettSouth Carolina's Katie Beckett (TEFRA) option, the waivers by name, the closed autism waiver, and appeals.
- South Carolina Fine Print: Medicaid When Your Child Turns 18 and 19The age 18 and 19 edges, adult Medicaid for disability, and the Working Disabled program.
- South Carolina Fine Print: Respite Help for Family CaregiversThe SC Respite Coalition voucher, who it focuses on, and what it cannot pay for.
- South Carolina Fine Print: The MCC WaiverThe Medically Complex Children waiver, and how a parent can be paid for the care.
- South Carolina Fine Print: Waiver WaitlistsCheck you are on the list, how to start at any age, use it or lose it, and the 364 day plan.
- Too Much Income for SSI? Meet the Medicaid Door Called Katie BeckettThe Medicaid option that counts the child's income only, and the exact conditions in the law.
- The Fine Print Nobody Hands You in MedicaidA no needs reasons, the hearing right, the 90 day ceiling, and what EPSDT says for children.
- The Fine Print on ABLE AccountsWho qualifies, who can contribute, what SSI ignores, what it can buy, and the repayment rule.
- The Fine Print on SSI Nobody Hands YouThe 60 day appeal clock, the review at 18, when parent income stops, and what is set aside.
- The Fine Print on Turning 18 and Turning 26The plan at 16, school rights at the age of majority, and health coverage to 26.
- Ready-to-Send Letters for ParentsCopy-and-send letters for evaluations, records, meetings, denials and the move to adulthood.
Fun fact: the paperwork from my son's first two years of diagnosis weighs more than he did at birth.
Other Resources
- Qualify for Benefits: SSI, SSDI, and waivers by the numbers
- By State: State-specific programs and contact info
- Glossary: Jargon decoded
- About: Who I am and why I wrote this