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

Childhood Cancer Lantern
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Rhode Island program

Nursing and hands-on care at home

Medicaid can pay for nursing and personal care at home when your child’s assessed needs support it.

What it is

Medicaid can pay for nursing and personal care at home when your child’s assessed needs support it.

Coming home can mean managing equipment, medicines and difficult nights. Medicaid can review whether nursing or personal care would help meet your child’s medical needs. The cancer diagnosis alone does not decide the hours.

Eligibility rules
  • Rhode Island Medicaid coverage and approval of the medically necessary service are required for payment. The team can discuss coverage and care planning together, including Katie Beckett when relevant. Pediatric private duty nursing is for children under 21 who need continuous skilled nursing, not simply help because a parent must work.
  • Fee-for-service requests go to the state clinical team. Children in managed care follow their health plan’s authorization process.
What you get
  • Approved nursing and personal care at home at no cost to the family.
  • An assessment of the care needed at home.
  • Temporary extra nursing hours may be available after discharge.
What this covers
  • The under-21 EPSDT benefit allows review of medically necessary services within federal Medicaid benefit categories. It does not cover every possible service.
  • Private duty nursing, home-health visits, personal care, PASS and children’s respite have different assessments and staffing requirements. The care team can identify the service that fits the child’s actual needs; a respite voucher is not a substitute for licensed nursing.
If you decide to apply
  1. Ask the discharge planner and oncology team to describe the nursing and hands-on care your child will need at home.
  2. Describe the nights, equipment and tasks you manage. Ask which Medicaid office or health plan should receive the request.
  3. Ask the team to send the clinical records and give you a copy of the written request and decision.

Your child’s Medicaid plan or the state pediatric clinical team · Official page ↗

After you ask
  • For fee-for-service, the clinical submission address is DHS.PedClinicals@dhs.ri.gov. The oncology team supplies the records.
  • A denial or a failure to act can carry appeal rights.
  • The plan or state should answer a nursing request within seven days, or 72 hours when urgent. If it says no, you can appeal; the social worker can help with the deadlines.
Good to know

Approved hours and an assessment are separate from a cancer diagnosis. The request needs a clear description of daily care.

Other details
  • The self-directed personal-care route starts at 18 and requires a nursing-facility level of care.
  • Medicaid does not pay a parent to nurse their own child. Ask the social worker whether any other program pays a parent for daily care; get the answer in writing before counting on it.

Federal background: Medicaid’s under-21 care benefit can cover medically necessary nursing and home care. These services may use state-plan/EPSDT coverage rather than a waiver; each service has its own assessment.

Official sources
Ask your social worker

“What nursing or personal-care help could make care at home manageable, and what would an assessment involve? If it fits our child’s needs, could the team help us request it before discharge?”

Why I’m asking: I want a realistic plan for the care we will be doing at home.

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

Say plainly what the nights are like at home. The assessment is built on that.

Your social worker

The discharge planner starts the request and follows it up.

The care team

The oncology team sends the clinical records and writes what care is needed at home.

Who decides
The state clinical team, or your child's Medicaid health plan.
Ask the care team
“Can you request private duty nursing hours before discharge, and tell us whether it goes to the state clinical team or to our plan?”

How to apply

First step: Ask the oncology team to request nursing hours now, and ask which route the request takes.

  1. Ask the oncology team to request nursing hours before discharge, not after.
  2. Ask which route applies: the state clinical team, or your child's health plan.
  3. If the answer is no or nothing comes back, ask for the refusal in writing and appeal.

Official application / program page ↗

Where it starts: The oncology team sends the clinical records. For fee-for-service, the address is DHS.PedClinicals@dhs.ri.gov.

What to gather

The diagnosis letter, the child’s insurance card, and the last two pay stubs cover most applications. The official page lists the rest.

How long: A state decision deadline for this was not published. Ask for a date in writing.

Watch out

  • Ask before discharge. Starting afterwards costs you weeks.
  • A parent of a child under 18 being paid to give the care is not established in Rhode Island.

The numbers and the rules

The arcane layer, kept on purpose. Checked September 10, 2026.

What it is worth

Nursing hours and personal care at home, paid by Medicaid, with extra hours possible just after discharge.

Covers: Private duty nursing hours at home · Personal care and help with daily living · Home assessment by a nurse · Anything medically necessary for a child under 21, on request

Legal protection: A refusal or a failure to act carries appeal rights

What it costs the family: No cost to the family when Medicaid authorises it.

The eligibility facts, as published

Coverage
the child is on Rhode Island Medicaid
Route
fee-for-service requests go to the state clinical team; managed-care children follow the plan's authorisation rules
Paid parent
not established for the parent of a minor; the self-directed personal-care route starts at 18 and needs a nursing-facility level of care

The trap: Anything medically necessary for a child can be requested through the children's benefit, including services the plan does not normally cover, and a refusal or a silence carries appeal rights. Ask the team to put the request in writing.

Where I read this

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