St. Louis, MO – Nine children with complex medical needs and their families, along with a coalition of parents and caregivers, have filed a lawsuit against the Missouri Department of Social Services to compel the State to ensure coverage of the in-home nursing care that it has found the children need. The children are represented by Legal Services of Eastern Missouri and the National Health Law Program.
“The State Medicaid agency is letting these children and their families down,” said Jane Perkins, Legal Director for the National Health Law Program. “Their health care providers have determined that they need in-home nursing to live at home with their families, and the State has agreed. Yet, these services are not being arranged for these children as required under the Medicaid Act and the Americans with Disabilities Act. This is placing great strain on the children and their caregivers.”
Joel Ferber, Director of Advocacy at Legal Services of Eastern Missouri, highlighted the burden placed on the children and caregivers. “These children are dependent on medical technologies and associated nursing care to stay alive—ventilators to breathe, tracheostomy tubes to clear airways, gastrostomy tubes to receive nutrition. The State has determined that in-home nursing is medically necessary for them yet has failed time and time again to put in place policies, practices, and procedures that ensure that care.”
G.T.’s daughter C.T. spent five years in the hospital after a life-threatening brain infection. G.T. explained: “She could have been discharged sooner but could not go home for lack of private duty nursing services. When she was finally discharged in 2019, she was supposed to receive 24-hour nursing care at home for the first few weeks. She did not get this care and had to return to the hospital twice. I am not a trained nurse and cannot give her the care she needs. My daughter is a smart, sassy, loving girl. Without the nursing services she needs, she is at risk of going back to the hospital. As a father, it is heartbreaking. I lost my job because we did not get the nursing services C.T. needed and I could not go into work. No family should face financial ruin just to take care of a child.”
Parents and caretakers of children like my grandson are stretched beyond their limits to scrape together the minimum of care their children desperately need.
M.S. has cared for her grandson T.S. since he was an infant. She says, “Finding and arranging nursing care for T.S. has become a full-time job, and I do not have an option not to do it. He is an amazing boy who has so much promise, and my role is to ensure he has every opportunity to succeed. Parents and caretakers of children like my grandson are stretched beyond their limits to scrape together the minimum of care their children desperately need. Our families suffer financially because we cannot work our former jobs. I am the President of the Caring for Complex Kids Coalition because I’ve seen too many families go through these devastating struggles. We hope that this lawsuit brings relief to our children and all children in Missouri with complex medical needs.”
The lawsuit has been filed with the U.S. District Court Western District of Missouri Central Division. For additional comment from Perkins or Ferber, or for further information, please contact NHeLP’s Director of Communications Andy DiAntonio at [email protected] or 202.621.1022.
Legal Services of Eastern Missouri advances justice through legal representation, education and supportive services. We partner with the community to improve lives, promote fairness and create opportunities for those in need. Since 1956, we have provided free legal help for more than 1 million low-income individuals/families with civil issues impacting housing, family law, public benefits, consumer fraud, healthcare, children’s well-being, special education and relief from domestic violence. For more information, please visit www.lsem.org.
National Health Law Program (NHeLP) protects and advances the health rights of low-income and underserved individuals and families. NHeLP advocates, educates and litigates at the federal and state levels. Our lawyers and policy analysts stand up for the rights of the millions of people who struggle to access affordable, quality health care. We are guided by the belief—a challenge—that each generation should live better than the last. For more information, visit www.healthlaw.org.