DOJ Finds Florida Violates Olmstead by Unnecessarily Institutionalizing Hundreds of Children with Disabilities in Nursing Facilities

On Tuesday, the Civil Rights Division of the United States Department of Justice issued this findings letter to the State of Florida.  Here's the key intro paragraph:

Our review of the State’s system reveals that the State fails to meet its obligations under Title II of the ADA and its implementing regulations, 28 C.F.R. Part 35, by unnecessarily institutionalizing hundreds of children with disabilities in nursing facilities. Many children entering nursing facilities in the State are unnecessarily separated from their families and communities for years. With adequate services and supports, these children could live at home with their families or in other more integrated community settings. The State’s policies and practices also place numerous other children who have medically complex or medically fragile conditions at risk of placement in nursing facilities and other institutional settings.

And here's the longer summary of findings:

We conclude that the State fails to provide services to children who reside in nursing facilities in the most integrated setting appropriate to their needs, and that the State’s policies and practices put many other children with medically complex or medically fragile conditions at risk of placement in such facilities.

Hundreds of children are currently segregated in nursing facilities throughout Florida. They are growing up apart from their families in hospital-like settings, among elderly nursing facility residents and other individuals with disabilities. They live segregated lives—having few opportunities to interact with children and young adults without disabilities or to experience many of the social, educational and recreational activities that are critical to child development.

As part of our investigation, we visited the six large nursing facilities that house the vast majority of children who reside in such facilities in Florida. At each facility, we met with numerous children and received a substantial amount of data. From our review of this data, we found a wide range of diagnoses among the children residing in each facility. Yet we consistently identified children who are qualified to receive services in the community, and who would benefit from moving home with their families or to other community settings if appropriate supports were provided to them. We also spoke with many families who want to have their children living at home but report their frustration with State policies that inhibit their ability to do so.

Indeed, the State has planned, structured, and administered a system of care that has led to the unnecessary segregation and isolation of children, often for many years, in nursing facilities. For example, despite State and federal policies that require the State to evaluate children entering nursing facilities for appropriate placement in community-based settings, we found few examples of concrete efforts by the State to identify services that would enable children entering these facilities to return home to their families. As a result, many children continue to be separated from their families simply because the State has failed to identify or connect them to sufficient community-based services to meet their needs.

The State has also implemented policies and practices that impair access to medically necessary services and supports that would enable children to transition home or to other community-based settings. For example, we learned of many instances of the State reducing or limiting the availability of in-home services that had been prescribed as medically necessary by a child’s physician, without reasonably considering the child’s actual needs. And in the last several years, the State has made substantial cuts to programs designed to support children and adults with developmental disabilities in the community, leading to a years-long waiting list to access services. While cutting community-based services, the State has simultaneously implemented policies that have expanded facility-based care, including payment of an enhanced per diem rate to nursing facilities serving children who have medically fragile conditions. These policies put children with medically complex or medically fragile conditions who currently live in the community at risk of placement in nursing facilities and other segregated institutional environments to receive necessary care.

Many family members of children in the facilities we visited have expressed their desire to bring their children home or see them move to a community-based setting. “I want my baby home,” said the mother of one three-year-old with Down syndrome and other conditions that require intensive assistance with respiratory and nutritional needs. Her daughter has been in a nursing facility since infancy. The mother expressed frustration that, in light of the services authorized by the State, she is only able to care for her child at home on certain weekends. Another mother traveled two hours round trip every day to visit her son, who resided in the children’s wing of a nursing facility for more than three years. Her son has a number of medical complications as a result of a near-drowning incident, and utilizes a ventilator for assistance with breathing. Although her son’s physician prescribed home health services to meet his needs at home, for years the State denied the amount of prescribed hours. Now that he receives the prescribed services, he lives at home with his family.

Providing appropriate services and supports to these children in more integrated settings can be reasonably accommodated. The State’s service system already makes available in-home care services to Medicaid-eligible children, as required by the Early and Periodic Screening, Diagnostic and Treatment (“EPSDT”) provisions of the Medicaid Act, including home health services, private duty nursing, personal care services, and certain day treatment services. In addition, the State currently provides other home and community-based services to individuals through its Medicaid program. Rather than ensuring the availability of these services when medically necessary and appropriate, the State’s system of services overly relies on institutional care in nursing facilities.

The State’s reliance on nursing facilities to serve these children violates their civil rights and denies them the full opportunity to develop bonds with family and friends and partake in educational, social, and recreational activities in the community. By implementing the remedial measures described below, the State will correct identified ADA violations and other unlawful deficiencies and fulfill its commitment to individuals with disabilities.

An extremely important case and issue.  If the state does not reach a negotiated resolution with the Department of Justice, DOJ could file suit.