Author & Founder of Autism Victory | Empowering autism families with resources, parental support & guidance 💡 |
Charlotte , NC
Joined November 2013
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We built Autism Victory so families don't have to dig through 50 state websites.
Benefits, respite, IEP help, books and audiobooks — in English and Spanish. Free for 7 days.
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Two free calls most autism families never make:
1. Dial 2-1-1 for local resources
2. Call your state's Protection & Advocacy org about your child's rights
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No single program covers the cost of autism.
The families who do best usually have 4–5 working at once: SSI, a Medicaid waiver, ABLE, grants, tax deductions.
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Medicaid waiver waitlists can run for years.
Apply now anyway. Your place in line starts the day you apply — the family that applies today is ahead of the one that waits for a crisis.
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Quick question for caregivers: when did you last get a full day off?
Respite exists for exactly that. Search your zip code at archrespite.org, then ask your state about Lifespan Respite.
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Before you accept a grant, ask: who gets paid?
Cash paid to your family can count against SSI's $2,000 limit if it isn't spent the same month. Grants paid straight to the provider don't.
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Medical expenses above 7.5% of your AGI are deductible on Schedule A.
Therapy, evaluations, equipment, mileage to appointments — a lot of autism families clear that bar and never claim it.
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Insurance denied ABA even though your state has a mandate?
Ask HR one question: "Is our plan fully insured or self-funded?"
Self-funded plans follow federal ERISA rules, not state mandates. That answer changes your next move.
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Being on Medicaid and having a waiver slot are two different things.
If your child is under 21 with Medicaid, EPSDT covers medically necessary services — no waitlist.
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On your child's 18th birthday, every legal right transfers to them. Medical, school, money.
Talk through decision-making options (supported decision-making, POA, guardianship) by 17 — not after.
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Working doesn't automatically mean losing Medicaid.
Section 1619(b) lets many SSI recipients keep Medicaid even after their earnings stop the SSI check — and the threshold is higher than most families guess.
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If your adult child's disability began before 22, they may get Social Security from YOUR work record once you retire, become disabled, or pass away.
It's called Childhood Disability Benefits. Most families never hear about it.
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ABLE accounts changed on Jan 1, 2026: disability onset now has to be before age 46, not 26.
A lot of adults who were shut out before can open one now.
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Most disability claims are denied the first time. A denial is usually a verdict on the paperwork, not on your child.
Describe a day, not a diagnosis: how often, how long, what happens.
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If SSI is being cut off, you have 60 days to appeal — but only 10 days to ask for benefits to keep coming while you appeal.
Most families miss the second deadline. Check the date on the letter.
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"You make too much for Medicaid."
In some states, Katie Beckett / TEFRA pathways look only at the child's income and assets — not the household's.
Worth asking about before you rule yourself out.
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In many states, Medicaid can pay a parent to care for their own disabled child through self-directed services.
Not a stranger. You.
Ask your state Medicaid office about self-direction.
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Respite care isn't a luxury. It's what keeps caregivers going.
Many Medicaid waivers cover it — and your place on a waitlist starts the day you apply, not the day you hit crisis.
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2026 SSI in plain numbers:
• Up to $994/month federal
• $2,000 resource limit for an individual
• That limit hasn't moved since 1989
An ABLE account can shelter up to $100,000 of savings from it.
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At 18, Social Security stops counting parent income for SSI.
If your child was denied as a kid because you "earned too much," that reason can disappear the month they turn 18. Worth a fresh look.
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