Florida\u2019s \u201cwidespread\u201d violation of severely disabled children\u2019s civil rights has caused scores of youngsters to be raised in sterile institutions far from their families, a federal appeals court found, rebuking the state for failing Florida\u2019s frailest children.<\/p>\n
The 11th U.S. Circuit Court of Appeals found that Florida\u2019s unwillingness to provide adequate in-home nursing care to the state\u2019s most fragile children has caused at least 139 youngsters to be institutionalized in nursing homes generally reserved for elders, some of them there since they were babies. Another 1,800 children are at risk of being placed in nursing homes due to the state\u2019s failure to provide care.<\/p>\n
\u201cMedically vulnerable children\u2014for example, those who require specialized care like breathing tubes\u2014require around-the-clock care or they may sustain significant injuries and even die,\u201d U.S. Circuit Judge Adalberto Jordan wrote in an opinion endorsed by Circuit Judge Nancy G. Abudu. Circuit Judge Andrew L. Brasher dissented.<\/p>\n
\u201cThat so many of these families have found ways to keep their children at home \u2014 often at great personal sacrifice \u2014 does not lessen the imminence of the future risk they face. Placing one\u2019s child in an assisted care facility is not a choice that families take lightly,\u201d the opinion stated. \u201cAnd\u2026some parents may justifiably fear that their children will face neglect at such a facility.\u201d<\/p>\n
The appeals court\u2019s opinion upheld a July 2023 ruling by U.S. District Judge Donald M. Middlebrooks that Florida\u2019s unwieldy system of funding and providing care for children with medical complexities, which relies largely on managed-care providers who are unaccountable to the state, has left families in \u201ca maze almost impossible for parents to escape.\u201d<\/p>\n
Middlebrooks ordered the state to improve community-based care for severely disabled kids to reduce its reliance on institutions. Among the provisions of Middlebrooks\u2019 order: a requirement that health administrators ensure that medically complex children receive at least 90 percent of the private duty nursing care their care plans prescribe.<\/p>\n
His injunction also requires an independent monitor, at the state\u2019s expense, to oversee the state\u2019s compliance with Middlebrooks\u2019 order. The monitor would have the power to hire staff and consultants, interview stakeholders and gather data on Florida\u2019s progress.<\/p>\n
In 2013, the U.S. Justice Department\u2019s Civil Rights Division sued the state, arguing in a class-action lawsuit that health administrators had made it so difficult for the parents of medically complex children to raise them at home that they chose instead to leave their kids in nursing homes.<\/p>\n
Federal laws such as the Americans with Disabilities Act require the states to provide care in settings that least restrict people with disabilities from participating in the same community activities as others.<\/p>\n
\u201cHistorically, disabilities were stigmatized, and those with disabilities were regularly placed in institutions with little to no contact with the outside world,\u201d the appeals court wrote. \u201cCongress therefore identified \u2018isolation and segregation\u2019 of disabled persons by society as a form of discrimination.\u201d<\/p>\n
Florida\u2019s system of care, Justice Department lawyers said, discouraged the parents of medically complex children from raising them within their families by making that option unsafe or unfeasible. Many parents were faced with the choice of staying up all night to monitor a ventilator, or risk the death of a child. Other parents lost jobs and income because poorly paid private duty nurses failed to show up for their shifts, forcing parents to stay home.<\/p>\n
The Justice Department\u2019s action followed a similar suit \u2013 dismissed by a federal judge \u2013 filed in 2012 by Florida children\u2019s and disability advocates representing the parents of children stuck in nursing facilities.<\/p>\n
\u201cChildren deserve, and have a right under the Americans with Disabilities Act, to live in their homes, and families should not be left with impossible choices to fill complex medical gaps themselves or institutionalize their child,\u201d said Matthew Dietz, a disability rights attorney who helped spearhead the original suit.<\/p>\n
A spokeswoman for the Agency for Health Care Administration \u2013 which oversees Florida\u2019s Medicaid program for people in poverty or with disabilities \u2013 did not respond to a request from a Herald reporter to discuss or comment on the opinion. Medicaid subsidizes most of the medical care for children with severe special needs.<\/p>\n
Florida has vigorously fought any effort to force health administrators to pay for additional in-home nursing, or to implement other remedies that might reduce the state\u2019s reliance on institutions.<\/p>\n
In recent years, Florida has not explained its reluctance to pay for improvements in care for children with extreme medical needs, except to say that the Justice Department\u2019s meddling in Florida\u2019s affairs is an affront to the principles of federalism, which grants the states the power to govern themselves. In pleadings, lawyers for the state have insisted the Justice Department has no business telling the state how to care for Florida\u2019s children.<\/p>\n
The appeals court wrote in its order that federalism does not allow the state to break the law or violate the rights of children.<\/p>\n
Generally, federal courts cannot order a state to create new programs or set aside large sums of new money. But, the opinion said, \u201cEven if the injunction pressured Florida to seek an appropriation, this would not necessarily violate federalism principles\u2026Nor do inadequate funds excuse a state\u2019s violation of federal law.\u201d<\/p>\n
State leaders also have argued that the parents of severely disabled children can, and should, be trained to provide medical care at home \u2013 including overseeing the use of ventilators \u2013 relieving the state of the burden of their care. The state has suggested that even teenaged siblings should be trained to stay home and care for children with breathing and feeding tubes.<\/p>\n
The appeals court affirmed Middlebrooks\u2019 finding that such expectations were unrealistic.<\/p>\n
\u201cFlorida\u2019s crabbed view,\u201d the opinion states, \u201cignores the realities of life on the ground.\u201d<\/p>\n
\u201cFlorida\u2019s assertion that trained parents can provide a similar level of care as private duty nurses fundamentally misunderstands the reality that many of these parents face,\u201d the opinion said. \u201cWhen private duty nurses fail to show up, parents often need to call out of work in order to stay home and care for their children\u2014causing them to lose income and even their jobs.\u201d<\/p>\n
Much of Middlebrooks\u2019 order, and the appeals court ruling that affirms it, concerns the in-home nursing care that parents of medically complex children rely upon. Middlebrooks found that 94 percent of the severely disabled children living with families could not access all of the private duty nursing hours that were approved, leaving gaps in care and children in harm\u2019s way.<\/p>\n
\u201cOne witness testified regarding a baby who had a [breathing tube] and was supposed to receive 24-hour private duty nursing,\u201d the appeals court ruling said. \u201cBecause of [nursing] staffing gaps, the mother was left alone with her baby. According to the witness, the mother left the room to do laundry, and when she returned, the baby had pulled his trach out, causing him to die.<\/p>\n
\u201cAnother parent described staying awake all night, setting alarms every 15 to 20 minutes, to ensure that her daughter\u2019s trach remains in place and that she is still breathing.\u201d<\/p>\n
Lack of in-home nursing causes severe financial stress on families, as well, the appeals court said.<\/p>\n
\u201cParents may miss shifts at work or be forced to give up their jobs,\u201d the opinion said. \u201cThe lost income in turn can affect a family\u2019s ability to make rent, therefore placing its members at risk of eviction. For example, one mother testified that due to persistent gaps in [nursing] she was forced to care for her son herself, causing her to miss work, which ultimately reduced her income to such an extent that she lost her home \u2014 and her son had to be placed in a nursing home.\u201d<\/p>\n
Middlebrooks\u2019 2023 ruling also sought to improve the work of \u201ccare coordinators,\u201d who are tasked with helping parents find ways to either remove their children from institutions, or avoid them in the first place. Several coordinators testified that they had little recourse, other than \u201ccalling agencies to try and fill open\u201d nursing shifts.<\/p>\n
Care coordinators also testified that higher reimbursement rates for private duty nurses likely would lead to fewer staffing gaps.<\/p>\n
When the Justice Department\u2019s lawsuit was filed in 2013, six nursing homes across the state had units devoted to the care of medically complex children. There are currently three, two of them in Broward County. The scarcity of facilities exacerbates the problem of families having to travel sometimes long distances to visit their disabled children, the court found, further isolating the kids.<\/p>\n
In his dissenting opinion, Judge Brasher argued that, under the guise of keeping children out of institutions, Middlebrooks\u2019 order was really designed to force Florida to improve its overarching system of care for disabled children \u2013 a reform the courts lack the authority to enforce.<\/p>\n
\u201cThe government\u2019s attorney made clear that the point of the litigation was to overhaul Florida\u2019s programs\u2026,\u201d Brasher wrote. \u201cWe\u2019re not suing on behalf of an individual. We\u2019re suing to change the policies and practices of the state of Florida.\u201d<\/p>\n
As \u201cprogram-overhauling proposals,\u201d Brasher wrote, the federal government cannot order the state to undertake them.<\/p>\n","protected":false},"excerpt":{"rendered":"Florida\u2019s \u201cwidespread\u201d violation of severely disabled children\u2019s civil rights has caused scores of youngsters to be raised in…\n","protected":false},"author":2,"featured_media":238343,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[6],"tags":[105722,7071,37131,28,30,29,33636,105726,105724,4440,105725,105723],"class_list":["post-238342","post","type-post","status-publish","format-standard","has-post-thumbnail","category-florida","tag-appellate-court","tag-children","tag-federal-appeals-court","tag-florida","tag-florida-headlines","tag-florida-news","tag-justice-department","tag-nursing-care","tag-nursing-homes","tag-parents","tag-private-duty-nurses","tag-private-duty-nursing"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/us-fl\/wp-json\/wp\/v2\/posts\/238342","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/us-fl\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/us-fl\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-fl\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-fl\/wp-json\/wp\/v2\/comments?post=238342"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/us-fl\/wp-json\/wp\/v2\/posts\/238342\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-fl\/wp-json\/wp\/v2\/media\/238343"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/us-fl\/wp-json\/wp\/v2\/media?parent=238342"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-fl\/wp-json\/wp\/v2\/categories?post=238342"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-fl\/wp-json\/wp\/v2\/tags?post=238342"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}