Written by a parent, not a doctor. Nothing here is medical advice.

Childhood Cancer Lantern
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Federal, exists in every state

A Medicaid option you may hear called Katie Beckett

Connecticut’s Katie Beckett waiver can cover a child with heavy care needs without counting parents’ income.

What it is

Connecticut’s Katie Beckett waiver can cover a child with heavy care needs without counting parents’ income.

Katie Beckett is an active Connecticut waiver. DSS looks at your child’s disability and level of care. Parents’ income does not decide eligibility, but an available place and the other rules still matter.

Eligibility rules
  • Parents’ income is disclosed but not counted. The waiver requires hospital, nursing-facility or ICF-level care.
  • CMS describes the current waiver as serving ages 0–22. DSS proposes a maximum age of 18 for the period after December 31, 2026; that proposal is not the current age ceiling. DSS confirms any transition protection for your child. Age alone does not establish eligibility or an available place.
What you get
  • Full Medicaid for a child who meets the waiver rules and receives a place.
Using other insurance
  • The waiver can sit behind a private plan.
If you decide to apply
  1. Ask DSS’s Katie Beckett team about an application and the waiting list.
  2. Ask the oncology team for records showing the care your child needs at home.

DSS Katie Beckett line, 860-424-4904 · Official page ↗

After you apply
  • DSS reviews the disability and level of care and manages the waiting list.
Good to know

A cancer diagnosis alone does not establish the required level of care. DSS confirms which date sets your waiting-list position and whether exceptions affect the order.

Other details
  • A disability finding and a level-of-care finding are different tests. A benefit comparison is not a recommendation to move states.
Official sources
Ask your social worker

“Could our child’s care needs fit Katie Beckett? What are the benefits, limits and likely wait, and would you help us apply if it fits?”

Why I’m asking: I want to understand whether care needs open a Medicaid route that does not count our income.

More background and detailed requirements
Additional program information and published rules

Who does what

The three parts, side by side. The agency decides; nobody on this page does.

You

Ask for the application paperwork this week, gather the child's own account balances, and get it filed within two weeks with fresh signatures.

Your social worker

Gets the application paperwork, sends the level-of-care form to the right clinician, and checks the signatures are current when it goes in.

The care team

Writes the level-of-care description: every daily task, how often, and what happens without it.

Who decides
The state Medicaid agency's disability review
Ask your social worker
“Can you help me apply for Katie Beckett (TEFRA)? Who on the team writes the level-of-care application paperwork, and how soon can it go in?”

How to apply

First step: Ask the social worker for the state's Katie Beckett application paperwork this week and who on the team writes the level-of-care section.

  1. Get the state packet this week.
  2. Have the clinician describe every daily task and what happens without it.
  3. File in the first two weeks. Coverage reaches back to the application month.

Where it starts: State TEFRA/Katie Beckett application

What to gather

  • Pathology report and oncologist's letter with diagnosis and relapse dates
  • The doctor's and nurse's description of daily skilled care (line care, medicines, monitoring)
  • The child's own accounts (the child's money is tested, usually at $2,000)

How long: Up to 90 days by federal rule for a disability application. File in the first two weeks so coverage reaches back to the application month.

What a yes looks like

Medicaid on the child's own record, no premium in most states, with a level-of-care end date on the letter.

What a no looks like, and the next move

“Level of care not met”: the doctor's description of daily care decides it. Ask what was missing, add the log, and appeal within the notice's period.

Watch out

  • Not every state has it. TEFRA states: AK, DC, DE, GA, ID, LA, ME, MA, MI, MN, MS, NE, NV, NH, OK, RI, SC, SD, WV, WI. Texas and California use other options. The state item explains.
  • The application paperwork expires: signatures usually have to be recent when it reaches the reviewer. Do not let it sit at the clinic.
  • A child on maintenance can be re-reviewed at the next level-of-care date. Ask when that date is.

The numbers and the rules

The arcane layer, kept on purpose. Checked September 7, 2026.

What it is worth

Full Medicaid on the child's own record, usually with no premium, regardless of parents' income.

Covers: Full state Medicaid benefits · EPSDT home nursing and equipment once enrolled

Legal protection: The test is disjunctive: hospital, nursing facility or ICF level of care. Any one suffices

What it costs the family: No premium in most states. Nevada charges by income.

The eligibility facts, as published

State option required
yes
Child at home
yes
Parental income
not counted
Child resource limit
usually $2,000
Level of care
hospital, nursing facility or ICF/IID; any one
Disability
SSI medical standard where applicable: documented acute leukemia meets listing 113.06A for at least 24 months from diagnosis or relapse, or at least 12 months after transplant, whichever is later; the agency still verifies evidence

Decisions this site cannot make: Disability · Institutional level of care · Cost-effectiveness (some states)

Expect friction on: Detailed medical packet with recent signatures · Re-review at the level-of-care date

The trap: The level-of-care test is separate from the disability test: the child must need the care of a hospital, a nursing facility, or an intermediate-care facility, any one of them. The doctor's description of daily care decides it, not the diagnosis.

What changes by state: Whether it exists, the name (Georgia calls it the Deeming Waiver), the premium (none in most. Nevada charges), the level-of-care form and how long a letter is valid.

Where I read this

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