Lawsuit alleges Missouri fails severely disabled children

ST. LOUIS -- Missouri is denying severely disabled children full access to services and failing to prevent unnecessary placements in institutions, according to a federal lawsuit.

The lawsuit was filed Tuesday on behalf of nine children and teenagers with medically complex conditions who are enrolled in Medicaid -- public coverage administered by the state, the St. Louis Post-Dispatch reported. Though the children have been approved for intensive in-home nursing care, the state is failing to arrange for the care or make sure the services are available, the suit alleges.

Also listed as a plaintiff is the Caring for Complex Kids Coalition, an association of parents and caregivers of medically complex children in Missouri.

A spokeswoman for the Missouri Department of Social Services said in an email that the department does not comment on pending litigation.

One of the plaintiffs had a brain infection six years ago when she was 12 that put her in a coma for a month. The preteen came out of it alert mentally, but unable to walk, breathe, eat or urinate on her own. She spent the next five years either in a hospital or rehabilitation facility, missing her twin brother and other family members, the suit states.

It wasn't until before Christmas last year that care for the teen -- who is referred to as "C.T.," 18, of Ferguson -- was lined up, and she was able to go home. But the suit said she never received the required level of nursing, resulting in her twice returning to the hospital with severe stomach and breathing tube complications. Her father quit his full-time job to work as an on-call maintenance technician, which he recently was fired from for not being able to respond to repair calls because of the lack of nursing care.

"C.T. and her family want her to live at home around her own people who know and love her," the lawsuit states.

Even if families are able to find nurses on their own, the state requires they be employed by a home health agency enrolled with Medicaid and licensed by Missouri to provide services. The suit states families have had to make repeated calls to home health agencies, contact nursing schools and make their children's circumstances public through social media to try to locate care.

The suit states the problem persists despite the cost of in-home nursing care being cheaper than inpatient care of a medically complex child -- $535 per 16-hour day (the maximum number of hours Missouri Medicaid authorizes) versus about $4,000 per day in a hospital or $2,235 per day in a rehabilitation facility.

The suit is asking the court to declare the state's practices are unlawful and require the state to provide relief to the families. They are represented by Legal Services of Eastern Missouri, which provides services for those with low income, and the Washington, D.C.-based National Health Law Program.