SSI & Medicaid Waivers (Katie Beckett / TEFRA)
Social Security Administration / state Medicaid agencies
Two government benefits. SSI childhood disability provides income support subject to family income and asset limits. Katie Beckett/TEFRA Medicaid lets a child with institutional-level care needs get Medicaid counting only the child's own income, regardless of parental income — valuable for families over SSI limits, covering copays, nursing, and equipment as secondary insurance. About 18 states plus DC have the classic TEFRA option; others run similar waivers, some waitlisted.
Barth syndrome is not on SSA's Compassionate Allowances fast-track list, verified against the April 2026 list, so SSI applications go through standard childhood disability evaluation — typically documented through the cardiomyopathy and heart failure, growth failure, and recurrent-infection listings.
SSI: children meeting SSA's disability standard, subject to family income/asset limits. Katie Beckett/TEFRA: children needing an institutional level of care; rules vary by state.
SSI: ssa.gov/apply or 1-800-772-1213. Katie Beckett/TEFRA: through the state Medicaid agency; kidswaivers.org has a state-by-state directory.
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Last updated August 28, 2026 · Suggest an update to this entry