Birth Injury Answers

Paying for Care guide

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The short answer

Apply for your state's Medicaid waiver first. Waiting lists in some states run for years, and your place is usually set by the date you applied. 1

Most families use several programs together rather than one.

The numbers, up front

Waivers may ignore family income
Many home and community based services waivers count only the child's own income and resources 1
TEFRA or Katie Beckett
A state option that lets a child with significant needs get Medicaid at home without counting parent income. Not every state has it 2
EPSDT
For children on Medicaid, cover of medically necessary services is required and is broader than adult cover 3
ABLE accounts
A tax-free savings account whose balance does not count against most benefit limits, up to defined thresholds 4
Never leave money directly to the child
Money in a child's own name can end Medicaid and SSI. A special needs trust holds it without counting 5

Apply for these now

  • Your state's Medicaid home and community based services waiver. Ask to be added to the waiting list today. 6
  • SSI, even if you expect to be turned down. 7
  • TEFRA or Katie Beckett, if your state has it. 2
  • An ABLE account. 4
  • Your state Title V program for children with special health care needs. 8
  • Your Family-to-Family Health Information Center, for free help with all of it. 9

Application tracker

Program / date applied / reference / status / next step

When something is denied

Denials are common and appeals often succeed.

  1. Ask for the denial reason in writing.
  2. Ask the therapist or doctor to address that specific reason in a revised letter of medical necessity.
  3. Use the appeal process, and note the deadline.
  4. For a child on Medicaid, cite the early and periodic screening, diagnostic and treatment benefit by name. 3
  5. Ask your Family-to-Family center for help. It is free. 9

Denial / date / reason given / what I sent back / outcome

Protecting benefits

Never leave money directly to a child with a disability in a will. It can disqualify them from benefits. Family should leave it to a third-party special needs trust instead. 5

Tell your relatives. This is the part families discover too late.

Use an ABLE account for everyday savings. The balance does not count against most benefit limits. 4 10

If a settlement is coming, a special needs trust and court approval are both part of it. See settlements.

People to tell about the trust

Where these facts come from

  1. Centers for Medicare and Medicaid Services, Medicaid.gov. Section 1915(c) Home and Community-Based Waivers. 2025. www.medicaid.gov/medicaid/home-community-based-services/auth. Link checked September 3, 2026.
  2. Centers for Medicare and Medicaid Services, Medicaid.gov. Katie Beckett and TEFRA State Plan Option. 2025. www.medicaid.gov/medicaid/eligibility/index.html. Link checked September 3, 2026.
  3. Centers for Medicare and Medicaid Services, Medicaid.gov. Early and Periodic Screening, Diagnostic, and Treatment (EPSDT). 2025. www.medicaid.gov/medicaid/benefits/early-and-periodic-screen. Link checked September 3, 2026.
  4. ABLE National Resource Center. What are ABLE Accounts. 2025. www.ablenrc.org/what-is-able/what-are-able-accounts/. Link checked September 3, 2026.
  5. Social Security Administration. Program Operations Manual System, SI 01120.203 Special Needs Trusts. 2025. secure.ssa.gov/poms.nsf/lnx/0501120203. Link checked September 3, 2026.
  6. Centers for Medicare and Medicaid Services, Medicaid.gov. Home and Community Based Services. 2025. www.medicaid.gov/medicaid/home-community-based-services/inde. Link checked September 3, 2026.
  7. Social Security Administration. Benefits for Children with Disabilities. 2025. www.ssa.gov/pubs/EN-05-10026.pdf. Link checked September 3, 2026.
  8. Health Resources and Services Administration. Title V Maternal and Child Health Services Block Grant. 2025. mchb.hrsa.gov/programs-impact/title-v-maternal-child-health-. Link checked September 3, 2026.
  9. Family Voices. Family-to-Family Health Information Centers. 2025. familyvoices.org/affiliate-organizations/. Link checked September 3, 2026.
  10. Internal Revenue Service. ABLE Accounts, Tax Benefit for People with Disabilities. 2025. www.irs.gov/government-entities/federal-state-local-governme. Link checked September 3, 2026.