The Honorable Pamela Jo Bondi

-1-

Attorney General for the State of Florida

Florida Department of Legal Affairs

PL-01 The Capitol

Tallahassee, FL 32399-1050

Re: United States’ Investigation of the State of Florida’s Service System for Children with Disabilities Who Have Medically Complex Conditions, D.J. No. 204-18-212

Dear Attorney General Bondi:

We write to report the findings of the Civil Rights Division’s investigation of the State of Florida (the “State”) with respect to its system for delivering services and supports to children with disabilities, including those who have medically complex or medically fragile conditions.[1] During our investigation, we assessed the State’s compliance with Title II of the Americans with Disabilities Act, 42 U.S.C. §§12131-12134 (the “ADA”), as interpreted by the Supreme Court in Olmstead v. L.C., 527 U.S. 581 (1999), requiring public entities to ensure that individuals with disabilities receive services in the most integrated setting appropriate to their needs.

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.

Consistent with the legal requirements set forth in the ADA, 42 U.S.C. § 12133, this letter serves to provide notice of the State’s failure to comply with the ADA and of the minimum steps the State needs to take to meet its obligations under the law.

SUMMARY OF FINDINGS AND CONCLUSIONS

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 withnumerouschildren 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-oldwith 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.[2]

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.[3] 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,[4] 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.

INVESTIGATION

On December 20, 2011, we sent your office a letter providing notice that the Department of Justice (the “Department”) had opened an investigation of the State with respect to the services it provides to children with disabilities under the age of twenty-one, including children who have medically fragile or medically complex conditions. We stated that the focus of our investigation was whether the State’s policies and practices regarding the services it provides these individuals violate federal law, including Title II of the ADA, 42 U.S.C. §12132, and its implementing regulations, as interpreted by the United States Supreme Court’s holding in Olmstead v. L.C., 527 U.S. 581 (1999). We further explained that the investigation was opened in response to information we received alleging that the State relies inappropriately and unnecessarily on nursing facilities, including those serving elderly individuals, as settings in which to provide services to children. In the same letter, we requested certain documents and other information related to our investigation. To date, and despite a number of requests, counsel from your office has declined to produce any information to the Department voluntarily.[5]

We have conducted a thorough investigation of the State’s system of services for children with disabilities—and particularly those who have developmental disabilities or who have medically complex or medically fragile conditions. We retained the services of an expert consultant with extensive experience arranging community-based services for children and youth in this population. With our expert, we visited a number of large nursing facilities that collectively serve more than two hundred children in Miami, Fort Lauderdale, Orlando, Tampa, and St. Petersburg.

We toured each facility and met extensively with administrators and staff. Children, ranging in age from infancy to early adulthood, are housed in rooms located along long hallways resembling hospital corridors. Children at some facilities wear identification bands at all times and are restricted to certain areas of the facility. For many, daily life occurs entirely within the facility. Upon arriving at one facility, we observed a significant number of elderly residents sitting in the facility’s entry hall and portico; children are housed on the second floor, and many only leave that floor for transportation to medical appointments or the occasional outing in the community. At another facility, the entryway to a primary outdoor space served as a smoking area for the adult and elderly residents. Nearby, an indoor central common area contained a number of children’s toys and a sitting area for elderly residents. At each facility, we observed children engaging in various activities scheduled by facility staff, watching television in a common area, or sitting unattended in their beds.

During our visits we also collected certain information related to the children residing in these facilities. Based on this data and other data routinely submitted to the federal government by these facilities, we have reviewed a substantial amount of information regarding these children, including each child’s length of stay in the facility. We and our consultant have also reviewed hundreds of pages of records, including a large number of care plans written by the facilities and periodic assessments conducted by the State.

We also spoke with family members of many of these children. They shared their stories with us, and many expressed their desire to raise their children in an environment that fosters involvement and participation in the community, close to the child’s family and loved ones. They also shared their frustration with the State’s administration of services and expressed the general perception that the State does not arrange for services in a manner that would allow their children to remain safely at home.

Families who care for children with medically complex conditions in their homes expressed similar concerns. Although their children currently access community servicesthat allow them to remain at home, the families have faced recent efforts by the State to reduce the availability of these services. For example, a number of families told us of their tireless efforts to ensure their children receive the amount of in-home nursing hours that their children’s physicians have prescribed. Repeatedly, however, the State has denied or reduced these medically necessary services. These families told us that the stress added by frequent reductions has impinged on their ability to care for their children.

During our examination of the range of services available within the State’s system, we met or held telephone conferences with numerous providers of community-based services for children with disabilities, including those that serve children who have medically complex or medically fragile conditions. We also interviewed stakeholders within the system and a number of advocates for families of children and youth with disabilities. Many within these groups articulated frustrations similar to those of the families with whom we spoke. Specifically, they informed us that the State’s administration of its service system is driven by considerations other than the health, safety, wellbeing, and development of the children being served, and as a result, families that are able,with appropriate supports, to care for their children at homemay be stretched to the point of admitting their child to a nursing facility or other institutional setting.

BACKGROUND

The State provides services to children with developmental disabilities and those who have medically complex or medically fragile conditions through a number of State agencies, including the Department of Health (“DOH”), the Agency for Health Care Administration (“AHCA”), the Department of Children and Families (“DCF”), and the Agency for Persons with Disabilities (“APD”). Within DOH, the Children’s Medical Services (“CMS”) program has lead responsibility for facilitating collaboration among these agencies to arrange for long-term care services for children with certain special health care needs, including medically complex and/or medically fragile conditions.[6] Collectively, representatives from each agency participate in a Children’s Multidisciplinary Assessment Team (“CMAT”), which convenes for each eligible child under the age of twenty-one identified as medically fragile or medically complex and needing certain long-term care services.[7] For children who receive services from several different agencies, CMAT staff is directed to work collaboratively with care coordinators from each agency to ensure that the child’s needs are met.[8]

Placement of Florida Children in Nursing Facilities

During our investigation we learned that through the CMAT process, the State has overseen the placement of hundreds of children into nursing facilities.[9] For a majority of the children referred to these facilities, the State pays an enhanced rate of over $500 per day per child, which is more than double what the facility receives from the State to serve elderly individuals and other adults.[10]

Through our visits to multiple facilities, reviews of resident records, and conversations with family members, we found that a significant number of children are referred to a CMATwhile hospitalized and placed in nursing facilities directly from the hospital.[11] For example, one ten-year-old child sustained a near-drowning accident at the age of six and was discharged from the hospital to a nursing facility, where she has remained ever since. Her mother lives hundreds of miles away from the facility, but tries to visit her daughter as often as she can. She told us, “if I had the resources to take care of my [child], you can be … sure [my child] would be living with me right now.” Another five-year-old child who has quadriplegia and respiratory complications resulting from a car accident has lived in a facility for three years since the accident. His mother wants to bring him home but reports that she has been told that the waiting time for community-based services is five to ten years. She told us, “I cry all the time thinking of [my child]….There should be something out there to help children come home.”

Other children were placed in a nursing facility from home after their families were unable to obtain necessary services and supports through the State Medicaid program. One eighteen-year-old who was born with cerebral palsy moved with her mother to Florida to be closer to other family members in 2007. Upon arriving in Florida, the family discovered that the State would not provide community-based services that the child had previously relied upon to live in the community. As a result, her mother had to placeher in a nursing facility to meet her medical needs. The grandmother of another nineteen-year-old young man diagnosed with traumatic brain injury told us that her family had no choice but to place their child in a nursing facility because of the State’s waiting list for community-based services. “If we took him home, we wouldn’t have gotten any help,” she told us. The young man still resides at the nursing facility, but is working towards obtaining a degree from a local high school.

Prior to each child’s admission to a nursing facility, the State is responsible for assessing whether placement in a community-based setting would be appropriate. The Pre-Admission Screening and Resident Review (“PASRR”)[12]is a two-step evaluation process, required by federal law, that is designed among other things to screen individuals entering nursing facilities for intellectual disabilities or related conditions (a “Level I” screening), determine whether the individual needs nursing facility services, assess whether placement in a community setting would be an appropriate alternative, and identify specialized services required to meet the individual’s needs (a “Level II” assessment).[13] If, after a Level I PASRR screening, it is suspected that a child has an intellectual disability or a related condition, the CMAT is tasked with referring the child to APD for a Level II assessment.[14] According to guidance from the State, the child may be admitted to the facility only after APD has completed a Level II assessment of the child.[15]