{"id":259017,"date":"2026-05-05T09:54:16","date_gmt":"2026-05-05T09:54:16","guid":{"rendered":"https:\/\/www.newsbeep.com\/us-fl\/259017\/"},"modified":"2026-05-05T09:54:16","modified_gmt":"2026-05-05T09:54:16","slug":"florida-families-caring-for-medically-fragile-children-say-system-is-failing-them","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/us-fl\/259017\/","title":{"rendered":"Florida families caring for medically fragile children say system is failing them"},"content":{"rendered":"

WINTER HAVEN, Fla., \u2013 A Volusia County woman accused<\/a> of trying to kill her disabled great-granddaughter before attempting to take her own life has put a long-standing crisis into sharp focus – Florida families caring for medically fragile children say the system is failing them.<\/p>\n

In December, Volusia County deputies said Deborah Collier, who had custody of the 13-year-old girl, told investigators she could not care for the child and feared placing her in an assisted living facility. Court records show Collier is scheduled to go on trial in June. <\/p>\n

News 6 spoke with Collier\u2019s attorney, who said family members were looking into help and care for the teen, but struggling to find something they can afford or that was adequate for someone that needs 24-hour care.<\/p>\n

A medically fragile child is defined as someone who requires a skilled nurse around the clock. <\/p>\n

Families struggle to get help<\/p>\n

According to Matthew Dietz, a disability rights lawyer and professor at Nova Southeastern University, there are between 7,500 and 10,000 medically fragile children in Florida. <\/p>\n

\u201cVery few of them get 100 percent of the care that they need,\u201d said Dietz, \u201cThe hours could range between 50 percent to 80 percent of what they are granted.\u201d <\/p>\n

One of those children is Dylan Webb, 13, Winter Haven. <\/p>\n

When News 6 met with Dylan\u2019s mother, Kayla, she had been on the phone for hours, fighting to get Dylan the care he needs. <\/p>\n

\u201cWe met Dylan when he was about two and a half years old,\u201d said Kayla Webb. <\/p>\n

After adopting Dylan, Webb said he was diagnosed with a heart condition, fetal alcohol syndrome and several other conditions. He also uses a G-Tube to help him eat. <\/p>\n

According to Webb, Dylan\u2019s private duty nursing, or PDN, is covered through Florida Medicaid, but his hours are getting cut. <\/p>\n

\u201cWe\u2019re probably short 20 hours a week,\u201d Webb told News 6. <\/p>\n

She said the state is cutting Dylan\u2019s hours because officials have determined the care is not medically necessary. <\/p>\n

\u201cThey\u2019re like he\u2019s not on a vent (ventilator), he\u2019s not on a trach (tracheotomy). He\u2019s not on a vent and he\u2019s not on a trach because we are this proactive in meeting his medical needs,\u201d said Webb. <\/p>\n

A decade-old lawsuit<\/p>\n

Webb filed a legal declaration, adding her voice to a more than decade old lawsuit. <\/p>\n

In 2013, the Department of Justice (DOJ) sued the State of Florida for violating the Americans with Disabilities Act (ADA), claiming the state was placing medically fragile children in nursing homes unnecessarily. The DOJ accused Florida of failing to provide adequate in-home nursing and community services to help families and avoid placing children in these facilities. <\/p>\n

In 2023, a federal judge found the state violated Title II of the ADA, which prohibits disability discrimination by state and local governments and requires them to make programs, services and activities accessible to people with disabilities. <\/p>\n

The court ordered Florida to make PDN reliable enough that children who need it can live at home. The state must ensure each PDN child receives at least 90 percent of the authorized nursing hours, collect and report nurse-availability data and take concrete steps toward compliance. <\/p>\n

News 6 asked Dietz why families like the Webbs are seeing their private duty nursing hours cut. <\/p>\n

\u201cAccording to the state, they claim that there\u2019s a nursing shortage and because there is a nursing shortage, there are not sufficient people who will accept to be a private duty nurse to care for these children,\u201d said Dietz. <\/p>\n

Pay, shortage at root of problem <\/p>\n

\u201cThere was a nine to 10 month period not a single shift was covered,\u201d said Webb, \u201cWe were told nobody was applying for the position.\u201d <\/p>\n

According to the Home Care Association of Florida, Florida ranks last in the nation- No. 50- for registered nurse reimbursement pay for private duty nursing.<\/p>\n

\u201cThe reimbursement rate is so low that the nurses aren\u2019t willing to work for that pay,\u201d said Denise Bellville a registered nurse and executive director of the Home Care Association of Florida<\/a>.<\/p>\n

As for current PDN pay rates, Belville said the picture is stark.<\/p>\n

\u201cThrough the MCOs (Managed Care Organizations<\/a>), they range anywhere from reimbursement of $38 to $52 an hour,\u201d Bellville said. \u201cThat\u2019s what the MCO is paying the agency, so the agency has to pay for benefits, et cetera, and the nurse gets what\u2019s left, but when you look at the rate of pay in a hospital, that nurse might be $45 to $60 an hour.\u201d <\/p>\n

Florida contracts with managed care organizations to administer its Medicaid program rather than managing benefits directly. <\/p>\n

\u201cWe did tons of meet and greets with nurses this year. Most of them were very honest and said \u2018sorry for the amount of money they\u2019re going to pay, I can\u2019t take this,\u2019\u201d Webb told News 6. <\/p>\n

In 2022, Florida launched two programs to get more students in nursing school to address the nursing shortage. The Linking Industry to Nursing Education<\/a>, known as LINE funds, funds partnerships between colleges, universities and health care providers.<\/p>\n

The Prepping Institutions, Programs, Employers, and Learners through Incentives for Nursing Education program, known as PIPELINE, awards money to nursing education programs based on graduation rates. <\/p>\n

\u201cFlorida has invested close to $500 million to support nursing education and address this vital need,\u201d Gov. Ron DeSantis stated during a January news conference. <\/p>\n

\u201cIf you look at what we\u2019ve done in both of these programs, (LINE and PIPELINE) we\u2019re now producing 1,000 plus additional nurses than we were before those every year,\u201d said Gov. DeSantis.<\/p>\n

However, according to the Florida Center for Nursing\u2019s 2026 report, many state nursing programs \u201ccontinue to face substantial barriers that limit their ability to expand enrollment and meeting Florida\u2019s workforce needs.\u201d <\/p>\n

The report stated programs cited a lack of qualified applicants which reflects a \u201cgrowing concern that interest in nursing careers may not be translating into adequately prepared applicants.\u201d <\/p>\n

\u201cOnce they become nurses, are they going to be private duty nurses at home? Or are they going to go to some other state that pays them a lot more money to do the same thing,\u2019 said Dietz, \u201cThe answer is, and the answer has always been pay nurses a living wage.\u201d<\/p>\n

Agency response<\/p>\n

News 6 contacted the Florida Agency for Health Care Administration, also known as AHCA, which oversees Florida\u2019s Medicaid program. The agency did not respond to our multiple requests for comment. <\/p>\n

News 6 also emailed Sunshine Health, which is contracted by AHCA to manage Medicaid benefits. <\/p>\n

According to a spokesperson, \u201cDecisions about private duty nursing services are guided by state and federal Medicaid requirements designed to ensure services are medically necessary and aligned with evidence-based standards of care.\u201d <\/p>\n

\u201cSunshine Health is deeply committed to the health and well-being of every child we serve, and to supporting the families who care for them. Decisions about Private Duty Nursing Services are guided by state and federal Medicaid requirements designed to ensure services are medically necessary and aligned with evidence-based standards of care. Every child\u2019s situation is carefully reviewed by board-certified pediatricians using established clinical guidelines and a comprehensive assessment of the child\u2019s individual circumstances. Our care management team works closely with families and providers to review needs, answer questions about coverage, and coordinate clinically appropriate services that are responsive to each child\u2019s condition.\u201d<\/p>\n

Sunshine Health Spokesperson <\/p>\n

Copyright 2026 by WKMG ClickOrlando – All rights reserved.<\/p>\n","protected":false},"excerpt":{"rendered":"WINTER HAVEN, Fla., \u2013 A Volusia County woman accused of trying to kill her disabled great-granddaughter before attempting…\n","protected":false},"author":2,"featured_media":259018,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[6],"tags":[28,30,29,571,2026,1911],"class_list":["post-259017","post","type-post","status-publish","format-standard","has-post-thumbnail","category-florida","tag-florida","tag-florida-headlines","tag-florida-news","tag-health","tag-investigators","tag-polk-county"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/us-fl\/wp-json\/wp\/v2\/posts\/259017","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=259017"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/us-fl\/wp-json\/wp\/v2\/posts\/259017\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-fl\/wp-json\/wp\/v2\/media\/259018"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/us-fl\/wp-json\/wp\/v2\/media?parent=259017"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-fl\/wp-json\/wp\/v2\/categories?post=259017"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-fl\/wp-json\/wp\/v2\/tags?post=259017"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}