Most require ventilators and round-the-clock, in-home care. They depend on the Medically Fragile, Technology Dependent Waiver to cover the costs.
New Medicaid changes affect the income eligibility levels for families. Without the waivers, some of these families will have to put their children in hospitals and nursing homes permanently.
They say they will not be able to afford extra medical costs on top of already high premiums, medicines and special equipment. The state says the cuts will impact around 50 families statewide.
Illinois Department of Healthcare and Family Services representative, Julie Hamos, says the state's "goal is not to put children in hospitals or nursing homes." Some of the families have filed a class action lawsuit against the state.