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

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Illinois program

Nursing and extra care at home (Medicaid / DSCC Home Care / Home Services Program)

Medicaid can pay for nursing and personal care your child needs at home. Some parents can be paid for approved care.

What it is

Medicaid can pay for nursing and personal care your child needs at home. Some parents can be paid for approved care.

Home nursing starts with the skilled care your child needs between appointments. Your doctor documents the tasks and hours, and HFS decides the nursing support. The Home Services Program separately assesses extraordinary personal care.

Eligibility rules
  • Medicaid eligibility is needed for Medicaid-funded services, but a qualifying waiver can establish it; an existing Medicaid card is not always required before asking about care. EPSDT applies under age 21 to medically necessary services within federal Medicaid benefit categories. MFTD and HSP each have separate clinical and financial assessments.
  • A legally responsible adult licensed as an RN or LPN can provide MFTD shift nursing.
  • HSP may pay a legally responsible parent for approved extraordinary personal care, up to the authorized amount or 40 hours a week, whichever is less. This is not a blanket cap on all nursing, all caregivers or all home-care services.
  • A parent who is a certified nursing assistant cannot yet be paid for a child under 21 on the waiver; only a parent who is an RN or LPN can.
  • The Home Services Program needs a disability expected to last at least a year, a care assessment that scores high enough, and family savings under $35,000 for a child.
What you get
  • Covered nursing and personal care at home based on your child’s assessed needs.
  • Payment to a parent who is an RN or LPN for approved nursing shifts.
  • Paid-parent personal care up to the approved hours or 40 hours weekly, whichever is less.
What the help includes
  • HFS sets nursing hours; DHS runs the Home Services Program. Approval and finding a nurse to staff the hours are separate steps.
  • Waiver nursing is paid by the state directly, not through a Medicaid health plan, so the appeal goes to the state.
If you decide to apply
  1. Ask the oncology team to record each skilled task and the time it takes.
  2. Ask your plan or DSCC care coordinator to help request nursing hours in writing. For personal care, discuss the Home Services Program with DHS rehabilitation services.
  3. Have a two-week care log, the doctor’s letter, equipment orders and Medicaid case number ready.

DSCC: 800-322-3722; DHS rehabilitation services for personal-care questions · Official page ↗

What happens next
  • A written decision identifies the approved hours or reasons for denial. Medical-service appeal help is at 855-418-4421; HSP appeal help is at 800-435-0774.
  • Medicaid must answer a request for nursing hours within seven days, or 72 hours when your child cannot safely wait. A refusal of MFTD nursing goes straight to a state hearing; the appeal line is 855-418-4421.
Good to know

A parent does not automatically qualify for pay. Nursing licensure and extraordinary-care rules decide which route can cover the work.

Other details
  • The Home Care Ombudsman at 800-252-8966 serves adults.
  • For pediatric home-care coordination, the Division of Specialized Care for Children (DSCC), at 800-322-3722, can help identify the responsible nursing program and route a service concern. DSCC is a care-coordination contact, not an independent ombudsman or a substitute for a formal appeal. Your hospital social worker can help obtain the written decision and identify an appropriate advocate for a dispute.
Official sources
Ask your social worker

“Could nursing or personal-care help cover the work we do at home, and could a parent be paid? What would it involve, and could you help us request an assessment?”

Why I’m asking: I want safe support at home and a clear answer about which care hours can be paid.

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

Keep a two-week log of every skilled task at home and ask, in writing, for nursing hours. Ask whether you can be paid.

Your social worker

The social worker or DSCC care coordinator submits the nursing request and appeals a refusal.

The care team

The doctor writes the medical necessity for each task and the hours needed.

Who decides
Healthcare and Family Services sets nursing hours; the Department of Human Services runs the Home Services Program.
Ask your social worker
“Can we request home nursing hours in writing under the children's rule (EPSDT)? Who decides the hours, and can a parent be paid for any of the care?”

How to apply

First step: Ask the oncology team to write down every skilled task at home, then request nursing hours in writing through the plan or DSCC care coordinator.

  1. Ask the oncology team to write the skilled tasks at home.
  2. Request nursing hours in writing under EPSDT; if refused, request the written decision and appeal.
  3. Ask DSCC or DHS whether a parent can be paid (RN/LPN nursing; HSP extraordinary care).

Where it starts: Ask the plan or DSCC care coordinator in writing for nursing hours under EPSDT; for HSP call DHS DRS. Appeals: 855-418-4421 (medical), 800-435-0774 (HSP).

What to gather

  • A two-week care log
  • The doctor's letter listing tasks, frequency and hours
  • Equipment orders
  • Medicaid case number

How long: For fee-for-service Medicaid service authorizations from January 1, 2026: ordinarily 7 calendar days from receipt, or 72 hours when urgent; a permitted standard extension can add up to 14 days. Assessment and staffing take separate time.

What a yes looks like

A written number of nursing hours from HFS and an agency staffing them; for HSP, a service plan naming the parent as provider.

What a no looks like, and the next move

Ask for the written denial and a review under Medicaid's under-21 rule (EPSDT), then appeal to a state fair hearing.

Watch out

  • A parent without a nursing license cannot yet be paid as a certified nursing assistant (CNA) for a child under 21. Ask DSCC whether that has changed.
  • The appeal route depends on who denied the service. Fee-for-service HFS denials go directly to the state-hearing route; managed-care denials have a plan appeal first. The notice gives the deadline and any shorter deadline to keep existing services.
  • DSCC at 800-322-3722 can coordinate home-care questions. DSCC is not an independent ombudsman and does not replace an appeal or hearing.

The numbers and the rules

The arcane layer, kept on purpose. Checked September 8, 2026.

What it is worth

Medically necessary nursing and personal care at home under Medicaid. A parent RN or LPN can be the paid nurse; HSP can pay a parent for extraordinary care up to 40 hours a week.

  • $40/week — HSP paid-parent (legally responsible individual) weekly cap

Covers: In-home shift nursing hours set by HFS (MFTD waiver, DSCC Home Care) · EPSDT: any medically necessary treatment for a child under 21, even services adults do not get · Home Services Program personal care with a paid parent for extraordinary care

Legal protection: Fee-for-service HFS denials have a direct state-hearing route; they do not require an MCO appeal first. HFS medical services: 855-418-4421; HSP: 800-435-0774. A managed-care denial follows its own plan appeal route.

What it costs the family: None.

The eligibility facts, as published

Medicaid
required
Epsdt
all medically necessary diagnostic and treatment services within the federal definition of Medicaid for members 20 and under
Paid parent rn lpn
licensed RN or LPN legally responsible adult can provide MFTD shift nursing
Paid parent cna
The paid legally responsible adult CNA expansion beginning May 27, 2026 applies to adults age 21 and older, not children under 21.
Hsp paid parent
legally responsible individual (a parent of a minor) paid for extraordinary personal care, capped at the plan's extraordinary-care hours or 40 hours a week, whichever is less
Delivery system
MFTD and nursing-and-personal-care participants are outside managed care

Decisions this site cannot make: HFS approved nursing hours · HSP service plan (HSP counselor or MCO care coordinator)

Expect friction on: Nursing-agency staffing · HSP eligibility is separate

The trap: A parent without a nursing license cannot yet be paid as a certified nursing assistant for a child under 21 (DSCC notice, May 2026). The paid-parent routes today are RN/LPN shift nursing and HSP extraordinary personal care.

Where I read this

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