{"id":420067,"date":"2026-10-06T09:44:15","date_gmt":"2026-10-06T09:44:15","guid":{"rendered":"https:\/\/www.newsbeep.com\/us-fl\/420067\/"},"modified":"2026-10-06T09:44:15","modified_gmt":"2026-10-06T09:44:15","slug":"families-of-floridas-medically-fragile-children-sound-alarm-as-feds-back-out-of-lawsuit-over-care","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/us-fl\/420067\/","title":{"rendered":"Families of Florida\u2019s medically fragile children sound alarm as feds back out of lawsuit over care"},"content":{"rendered":"<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">Two Florida women are facing charges for attempting to kill their special needs family members \u2014 cases that are drawing renewed attention to a long-standing crisis facing families who care for medically fragile children in the state.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">According to the Osceola County Sheriff\u2019s Office, <a href=\"https:\/\/www.clickorlando.com\/news\/local\/2026\/09\/18\/osceola-county-woman-accused-of-trying-to-kill-adult-autistic-sons-told-deputies-she-struggled-to-care-for-them\/\" target=\"_blank\" rel=\"nofollow noopener\">Marilyn Therrell<\/a>, 68, admitted to deputies that after her husband died last year, it became harder to care for her two autistic adult sons. Therrell is accused of trying to kill both sons before attempting to take her own life.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">In a separate case, <a href=\"https:\/\/www.clickorlando.com\/news\/local\/2025\/12\/30\/deland-woman-drugs-disabled-great-granddaughter-in-murder-suicide-attempt-deputies-say\/\" target=\"_blank\" rel=\"nofollow noopener\">Deborah Collier<\/a>, 70, of Volusia County, is facing charges for allegedly attempting to kill her disabled great-granddaughter \u2014 a 13-year-old in her custody \u2014 before trying to take her own life.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">In an arrest affidavit, Collier told investigators she could not care for the child and feared placing her in an assisted living facility.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">News 6 previously spoke with Collier\u2019s attorney, who said family members were looking for help and care for the girl but struggling to find something they could afford or that was adequate for someone who needs 24-hour care.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">[WATCH: Florida families caring for medically fragile children say system is failing them]<\/p>\n<p>A crisis years in the making<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">These cases are not isolated incidents. They reflect a much deeper, systemic problem \u2014 one that thousands of Florida families are living every day.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">Both cases are shining a spotlight on a <a href=\"https:\/\/www.clickorlando.com\/news\/local\/2026\/05\/05\/florida-families-caring-for-medically-fragile-children-say-system-is-failing-them\/\" target=\"_blank\" rel=\"nofollow noopener\">long-standing crisis<\/a> for Florida families caring for medically fragile children \u2014 defined as children who require a skilled nurse around the clock.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">There are between 7,000 and 10,000 medically complex children in Florida, according to Matt Dietz, a disability rights expert. <\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">\u201cVery few of them get 100% of the care that they need,\u201d said Dietz.<\/p>\n<p>One family\u2019s story<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">Tricia Rafeedie and her family are moving out of Florida to get better care for 6-year-old Noah, whom they adopted through foster care when he was 1.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">\u201cHe is cognitively still maybe two years old,\u201d Rafeedie told News 6.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">Noah has about 20 diagnoses, ranging from autism and fetal alcohol syndrome to severe brain damage. He also uses a feeding tube.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">Rafeedie said she had to leave her job as a child protection investigator to stay home and care for Noah full time.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">\u201cWe were told to apply for private duty nursing. That was denied. We were denied home health aide. We were denied paid parent caregiving,\u201d she said.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">[RELATED:<a href=\"https:\/\/www.clickorlando.com\/news\/local\/2026\/05\/05\/the-us-is-in-dire-need-of-home-health-aides-florida-ranks-dead-last-in-availability\/\" target=\"_blank\" rel=\"nofollow noopener\" title=\"https:\/\/www.clickorlando.com\/news\/local\/2026\/05\/05\/the-us-is-in-dire-need-of-home-health-aides-florida-ranks-dead-last-in-availability\/\"> US is in dire need of home health aides. Florida ranks dead last in availability<\/a>]<\/p>\n<p>Navigating a maze of programs<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">For families like Rafeedie\u2019s, navigating Florida\u2019s care system means wading through a maze of programs. <\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">According to the Florida Agency for Health Care Administration \u2014 also known as AHCA \u2014 which oversees Florida Medicaid, <a href=\"https:\/\/ahca.myflorida.com\/medicaid\/medicaid-policy-quality-and-operations\/medicaid-policy-and-quality\/medicaid-policy\/medical-and-behavioral-health-coverage-policy\/specialized-health-services\/private-duty-nursing-services.html?utm_source=chatgpt.com\" target=\"_blank\" rel=\"nofollow noopener\">Private Duty Nursing<\/a>, or PDN, is designed for children whose medical conditions require skilled nursing care in the home or community, rather than just help with everyday tasks like bathing or eating.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">A <a href=\"https:\/\/ahca.myflorida.com\/medicaid\/medicaid-policy-quality-and-operations\/medicaid-policy-and-quality\/medicaid-policy\/medical-and-behavioral-health-coverage-policy\/specialized-health-services\/home-health-services.html?utm_source=chatgpt.com\" target=\"_blank\" rel=\"nofollow noopener\">home health aide<\/a> takes a different approach, providing hands-on assistance with daily living activities and personal care needs \u2014 things like mobility, grooming and medication reminders.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">For families who want to take a more active role, Florida created the <a href=\"https:\/\/ahca.myflorida.com\/family-home-health-aide.html?utm_source=chatgpt.com\" target=\"_blank\" rel=\"nofollow noopener\">Family Home Health Aide Program<\/a>. It allows an eligible family member, legal guardian or caretaker relative to be trained and employed by a participating home health agency to provide those same home health aide services directly to a medically fragile child \u2014 essentially putting parents and guardians on the payroll to do what many are already doing for free.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">Despite these programs existing on paper, Rafeedie said her family was turned away at every turn.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">\u201cThe system has failed him,\u201d Rafeedie said. \u201cWhen I started to stall out, I started to look into the community, that\u2019s when I realized, oh my God, this is state level. These are large agencies that aren\u2019t holding accountability.\u201d<\/p>\n<p>A decade-long legal battle<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">The struggle families like Rafeedie\u2019s face didn\u2019t happen overnight \u2014 and neither did the legal fight to address it.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">In 2013, the Department of Justice sued the state of Florida for violating the Americans with Disabilities Act, 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 avoid placing children in these facilities.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">\u201cThey were sued under Olmstead, which is a Supreme Court decision implementing part of the Americans with Disabilities Act saying that there\u2019s a requirement in the law to have an integrated environment, so you don\u2019t isolate people with disabilities,\u201d said Dietz.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">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<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">The court ordered Florida to make PDN reliable enough that children who need it can live at home. In practical terms, that means the state must ensure each child receiving PDN gets at least 90% of their authorized nursing hours, collect and report nurse-availability data and take concrete steps toward compliance.<\/p>\n<p>Federal rollback raises new fears<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">Just when families thought the legal system was working in their favor, the ground shifted again.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">In July 2026, the DOJ said Olmstead Guidance has no force of law and that it will not rely on the guidance in enforcing Title II of the ADA going forward.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">Then, in August 2026, the DOJ filed a motion asking the 11th U.S. Circuit Court of Appeals to throw out the ruling in United States v. Florida and send the case to a lower court for reconsideration.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">\u201cThe United States has advised the court that it no longer intends to uphold the integration mandate of the ADA, which requires people, children, adults, to receive services in the most integrated, community-based areas possible,\u201d said Dietz.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">Dietz has been part of the case for 13 years. He says the decision impacts more than 3,000 families in Florida. Some of those families are now writing to the court, asking it to keep the injunction in place, fearing they could lose even more services.<\/p>\n<p>Families speak out<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">Kayla Webb is one of those families. She previously spoke with News 6 about her son Dylan\u2019s nursing hours being cut \u2014 hours her family depends on every week.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">\u201cWe\u2019re probably short 20 hours a week,\u201d Webb said.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">Webb recently filed an affidavit with the court, writing: \u201cWe try to help him (Dylan) have a typical childhood and he enjoys his school and community. To remove him from his home, his school, his community would be detrimental to him.\u201d<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">News 6 also obtained a letter from another mother who wrote to the court stating: \u201cParental devotion should not be used as evidence that professional services are unnecessary.\u201d<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">For Dietz, the letters pouring in from families represent something much bigger than a legal filing \u2014 they are a desperate plea to be seen and heard.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">\u201cThese are the Whos in \u2018Horton Hears a Who\u2019 who\u2019s going \u2018we are here, we are here, we are here. Listen to us,\u2019\u201d he said.<\/p>\n<p class=\"sc-dLMFU sc-fHjqPf jbiTJv kYFPaL article-text\">The Department of Justice did not respond to News 6\u2019s request for comment. The Florida Agency for Health Care Administration also did not respond to an inquiry.<\/p>\n<p>Copyright 2026 by WKMG ClickOrlando &#8211; All rights reserved.<\/p>\n","protected":false},"excerpt":{"rendered":"Two Florida women are facing charges for attempting to kill their special needs family members \u2014 cases that&hellip;\n","protected":false},"author":2,"featured_media":420068,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[6],"tags":[28,30,29,2161,571,2026,12231,99],"class_list":["post-420067","post","type-post","status-publish","format-standard","has-post-thumbnail","category-florida","tag-florida","tag-florida-headlines","tag-florida-news","tag-government","tag-health","tag-investigators","tag-medicare","tag-politics"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/us-fl\/wp-json\/wp\/v2\/posts\/420067","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=420067"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/us-fl\/wp-json\/wp\/v2\/posts\/420067\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-fl\/wp-json\/wp\/v2\/media\/420068"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/us-fl\/wp-json\/wp\/v2\/media?parent=420067"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-fl\/wp-json\/wp\/v2\/categories?post=420067"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us-fl\/wp-json\/wp\/v2\/tags?post=420067"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}