CHICAGO (CN) – A disabled Chicago-area boy and his mother filed a federal class action Thursday in an attempt to continue getting the public funding they say keeps him alive and at home.
Angela Donegan, mother of Blake Donegan, claims her son “is a medically fragile disabled person who currently receives funding from [Illinois Healthcare and Family Services] for approximately 14 hours a day of in-home shift nursing services.”
Blake’s Niemann-Pick Disease Type C causes him to not be able to process cholesterol and other lipids properly, and can lead to spleen and liver damage and neurological symptoms.
“Due to the severity of Blake’s medical condition, Blake requires round the clock care and supervision,” according to the complaint, which was filed in Chicago federal court.
He has developed a form of epilepsy and polycystic kidney disease. Most children with Niemann-Pick Disease do not live past 20.
Blake just turned 21 this year, but that means the Medicaid money he gets through the IHFS Nursing and Personal Care Services program to pay for his $14,000 per month at-home nursing services is now cut in half.
If he can’t stay at his mother’s suburban home, he’ll be forced to live at a hospital or other institution at a cost of $55,000 per month, or worse, according to the Donegans.
“The reduction in funding will either result in the plaintiff becoming institutionalized (hospitalized) or if he remains in the family home without sufficient skilled nursing care, then he faces a strong possibility of imminent death or a life threatening episode,” the complaint states.
The Donegans claims that cutting funding for disabled people 21 and over violates the Americans with Disabilities Act and the Rehabilitation Act, both of which bar “unjustifiably segregating persons with disabilities in institutions.”
Their attorney, Robert Farley Jr., says they filed an administrative appeal that continued Blake’s nursing services until their lawsuit is resolved.
Farley said the Donegans are going to court on Dec. 15 to ask for interim relief for themselves and the class while the lawsuit is pending. According to the complaint, 411 children were participating in the NPCS program as of April.
The complaint asks the court to find that IHFS’ age policy is discriminatory and that it must continue full funding for the disabled person’s medical care.
John Hoffman, spokesman for IHFS, told Courthouse News that the agency will not comment on ongoing litigation.