CHICAGO (CN) - Parents of severely disabled children claim in court that there are not enough nurses willing to fill Medicaid in-home nursing shifts, forcing their children to remain institutionalized at a hospital.
Lead plaintiffs Garland and Julie Burt, on behalf of their child O.B., filed a federal class action lawsuit Friday against Felicia Norwood, director of the Illinois Department of Healthcare and Family Services.
The children of the proposed class have all been found eligible for Medicaid-funded in-home nursing services, whereby a nurse or certified nursing assistant will provide services in the child's home.
However, the parents' lawsuit claims there are not enough nurses available through the program to cover all the qualifying hours.
"Medicaid-eligible children residing in Illinois with disabling and chronic health conditions bring this suit to challenge the defendant's systematic failure to arrange for in-home shift nursing services," the complaint states. "Defendant acknowledges that in-home shift nursing services are medically necessary for all named plaintiffs and class members. Yet, the defendant, through her systems, policies, and practices, has failed to arrange for adequate in-home shift nursing services for the plaintiffs and class."
O.B. has been institutionalized because he cannot get the in-home nursing services he needs, his parents say.
The 23-month-old was born prematurely with Down syndrome, pulmonary hypertension, chronic lung disease, and other disorders. He requires a tracheostomy, a ventilator and a gastrostomy-jejunostomy tube for nutrition and medication.
"O.B.'s parents have spent the last nine months searching for adequate in-home nursing services so that O.B. may be safely discharged from [the Children's Hospital of Illinois]," according to the lawsuit.
But "the nursing agency that O.B.'s parents work with has not been able to find nurses to staff O.B.'s case. O.B.'s parents have been unable to find another nursing agency to fully staff the nursing hours that the defendant approved for O.B," the complaint states.
Part of the reason it is so difficult to find nurses willing to do the job is the pay, the parents say. One candidate backed out of the position after finding out that the pay for O.B.'s care was $11 less per hour than the nurse would receive working at a nursing home.
O.B.'s father works for the state of Illinois, so the child's hospital bill is being paid partially by a private insurer, but the insurer does not cover long-term private nursing services, according to Friday's lawsuit.
The child's care at the Children's Hospital costs $78,000 per month, almost four times what in-home nursing care would cost, which is about $19,718 per month at 18 hours per day of care.
"For months, the defendant has been aware of O.B.'s inadequate services," the lawsuit states. "The April 7, 2015 letter stated that no in-home shift nursing services have been provided to O.B. as O.B. remains hospitalized. The April 7, 2015 letter further stated that, 'The nursing agency has not been able to fully staff the case, so O.[B.] is still residing at Children's Hospital of Illinois in Peoria. O.[B.] was scheduled to be discharged to home on 3/23/2015. Staffing from the nursing agency was not enough that it was felt to be safe for O.[B.] to go home.'"
There are allegedly four other children like O.B. who are currently unable to be discharged from the Children's Hospital due to the unavailability of nurses to fill in-home nursing shifts.
The complaint seeks a declaration finding that the state's failure to arrange for nursing is a violation of the Medicaid Act and Americans with Disabilities Act, as well as a permanent injunction.
The parents are represented by Robert Farley, Jr. in Naperville, Ill., Shannon Ackenhausen of Legal Council for Health Justice, and Jane Perkins with the National Health Law Program.
John Hoffman, communications director for the Illinois Department of Healthcare and Family Services, declined to comment on pending litigation.