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

Childhood Cancer Lantern
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Illinois program

Medicaid without counting parents’ income (MFTD Waiver / DSCC Home Care Program)

Medicaid and nursing at home for a child with intensive medical needs. Parents’ income does not decide eligibility.

What it is

Medicaid and nursing at home for a child with intensive medical needs. Parents’ income does not decide eligibility.

The MFTD waiver can open Medicaid without counting parents’ income and can provide a distinct route to intensive care at home. Having All Kids already, or being below its income limit, does not by itself answer whether a Home Care assessment is useful. DSCC checks the required level of care, and DHS and HFS check the other waiver rules.

Eligibility rules
  • Your child must apply before age 21. Enrollment can continue past 21 when it began before that birthday.
  • The state scores whether your child needs hospital or skilled-nursing-facility care. Estimated home care must cost the state less than institutional care.
  • DHS checks disability using Social Security’s childhood standard. Acute leukemia meets that disability standard for at least 24 months after diagnosis or relapse.
What you get
  • Full Medicaid if your child passes the waiver’s care and financial tests.
  • Nursing shifts at home, with hours based on your child’s needs.
  • A licensed parent nurse can be paid for approved nursing care.
What the help includes
  • Waiver participants receive Medicaid outside managed care. HFS decides the nursing hours and DSCC coordinates care.
  • Line care, IV nutrition, tube feeds, oxygen and monitoring belong in the care assessment. None automatically qualifies a child.
If you decide to apply
  1. Ask the oncology social worker whether a DSCC Home Care assessment fits your child’s needs.
  2. Contact DSCC’s Home Care Program at 800-322-3722 for its application.
  3. Have your child’s income and account records, equipment list and a two-week care log ready. Ask the doctor to describe each skilled task.

DSCC Home Care: 800-322-3722 · Official page ↗

What happens next
  • The Medicaid decision takes up to 60 days once the packet is complete. The nursing assessment and finding a nurse are separate steps that can take longer.
  • DSCC confirms current capacity, any waiting list and the next care-assessment step. The discharge team can plan separately for care needed before the waiver process is finished.
Good to know

DSCC’s Home Care Program is separate from its Core Program, which excludes leukemia. A cancer diagnosis alone does not pass the home-care test.

Other details
  • The developmental-disability waivers require an intellectual or developmental disability; leukemia alone does not meet that requirement.
  • If a request is denied, the written reason identifies whether the issue is care level, score, cost, disability or the child’s finances.
Official sources
Ask your social worker

“Does our child’s care at home meet the waiver’s test? What would we gain, what would it involve, and could you help with a DSCC referral if it fits?”

Why I’m asking: I want to know whether the care we provide at home could open Medicaid and nursing support.

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

Call DSCC, ask for the Home Care Program, keep a daily log of skilled tasks and sign the packet.

Your social worker

The social worker judges whether home care is nursing-level, makes the DSCC referral and gathers the medical records.

The care team

The doctor and nurses describe every skilled task at home: line care, IV nutrition, tube feeds, oxygen, equipment, monitoring.

Who decides
DSCC scores the level of care for Healthcare and Family Services; the Department of Human Services decides disability and Medicaid eligibility.
Ask your social worker
“Does my child's care at home reach hospital or nursing-home level? Can you refer us to DSCC's Home Care Program (800-322-3722) and write the nursing needs down?”

How to apply

First step: Ask the oncology social worker whether your child's home care is nursing-level. If yes, call DSCC at 800-322-3722 and ask for a Home Care Program referral this week.

  1. Ask the oncology social worker whether your child's home care (IV nutrition, central-line care, tube feeds, oxygen) is nursing-level.
  2. Call DSCC 800-322-3722 and ask for a Home Care Program referral.
  3. Keep a two-week log of every skilled task at home.

Official application / program page ↗

Where it starts: Call DSCC at 800-322-3722 and ask for the Home Care Program, or download the application and email it to dsccenrollment@uic.edu. The enrollment team assembles the HFS packet.

What to gather

  • Child's Social Security number and birth certificate
  • Any income or accounts in the child's name
  • The doctor's description of skilled care at home and the equipment list
  • A two-week log of daily skilled tasks
  • The DSCC application form

How long: The financial decision generally has a 60-day clock from the application date. DSCC clinical assessment, the care plan and finding staff are separate steps; DSCC confirms their timing.

What a yes looks like

Full Illinois Medicaid outside managed care, an approved number of nursing hours from HFS, and a DSCC care coordinator.

What a no looks like, and the next move

Ask which test failed: level of care, the tool score, the cost comparison, disability or the child's own money. If the care test failed, ask what home-care change would pass it, and check the monthly spend-down and All Kids the month income drops.

Watch out

  • Ask for the Home Care Program by name. DSCC (the Division of Specialized Care for Children) runs two programs: its Core Program excludes leukemia by rule; the waiver does not.
  • The test is hospital-level or nursing-home-level care scored on a state tool. Daily chemo pills and clinic visits alone do not pass; IV nutrition, a central line, tube feeds or oxygen at home can.
  • The waiting-list status and the child-only money limits were not published. Ask DSCC both questions on the first call and write the answers down.

If they say no, quote this: MFTD waiver: under 21 at application; level of care appropriate to a hospital or skilled nursing facility; "May qualify regardless of parental income" (HFS MFTD page; DSCC Home Care).

The numbers and the rules

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

What it is worth

Full Illinois Medicaid plus in-home shift nursing, judged without parents' income. No premium was found in the rules; the child-only money limits were not published.

Covers: Full Illinois Medicaid (outside managed care) · In-home shift nursing hours set by HFS · A parent who is an RN or LPN can be the paid nurse · EPSDT

What it costs the family: No premium or cost share found in the rules. Treat the child-only income and savings limits as unknown until DSCC states them.

The eligibility facts, as published

Age
under 21 at application; enrollment continues after 21 for a child enrolled before the 21st birthday (since 2017-05-01)
Level of care
level of care appropriate to a hospital or skilled nursing facility, plus the minimum score on the Illinois level-of-care tool
Cost test
estimated cost to the state less than institutional care
Disability
SSA childhood standard, verified by DHS Central Office 238 (acute leukemia meets it for 24 months from diagnosis or relapse)
Parental income
disregarded ("May qualify regardless of parental income", DSCC)
Child income and resources
not published; unknown
Premium
none found
Waiting list
not found (unknown is not "no list")
Katie beckett
none: Illinois is not a TEFRA/§1902(e)(3) state; no state-plan option found
Developmental disability waivers
the Support and Residential waivers for children with developmental disabilities (ages 3-21, family income waived) need an intellectual or developmental disability and are not a leukemia route

Decisions this site cannot make: Level of care (DSCC for HFS) · SSA-standard disability and Medicaid eligibility (DHS Central Office 238) · Cost comparison with institutional care

Expect friction on: Hospital-level or nursing-home-level care must be documented; chemo alone does not pass · Enrollment timeline not published

The trap: Two DSCC programs share one phone number. The Core Program excludes leukemia by rule; the Home Care Program (this waiver) does not, because it looks at nursing need. Ask for Home Care by name.

Where I read this

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