More than 20,000 Floridians with disabilities left waiting for solutions
The Brief
Florida provides around 35,000 residents with developmental disabilities with services, but more than 20,000 others have been stuck on a wait list for years.
In 2025, the state opened a voluntary, pilot program for home-based services in parts of the state.
Florida lawmakers have an interest in expanding it to everyone on the wait list.
TAMPA, Fla. - Throughout Florida, people with severe disabilities are suffering without the home-based services they are eligible to receive. Florida's government provides services to around 35,000 residents living at home with developmental disabilities, but more than 20,000 others have been stuck on a wait list for years.
Big picture view
Florida gives people with severe developmental disabilities a choice: choose an institutional setting and be separated from their loved ones or stay with their families and get them services they need at home. Many choose the home option, which is cheaper and intended to save state taxpayers. However, many who choose this option get caught in a government backlog and spend years waiting for the support.
WAITING FOR HELP: Delays in services for people with developmental disabilities troubles state lawmakers
A Floridian's Perspective
JJ Holmes requires a wheelchair and uses a voice synthesizer to communicate. For the past year, we've followed JJ and his mother Alison from their home in Seminole County, to the Florida capitol, to legislative meetings in the Tampa Bay area.
When given opportunities to speak in public forums, JJ thanked the state for recently providing home-based services through the iBudget Waiver, but he and Alison stress that there is nothing to celebrate after 18 years of waiting — especially as Florida's Agency for Persons with Disabilities (which manages the wait list) left $360 million it received from the legislature unspent.
"I mean, it's just it's devastating to know that 18 years that he's wasted, and that money was just sitting there unspent," Alison said.
Follow FOX 13 on YouTube
JJ Holmes knows how to get lawmakers' attention and push them, and they've said that's exactly what they need. In 2024, after FOX 13 aired JJ's story and followed him through the halls of power, the legislature responded. It passed a bill committing more than $38 million to get JJ and around 300 others off the wait list.
Now, JJ is traveling across the state on behalf of more than 21,000 others still caught in the backlog.
"If I was a teacher and the state legislature was my student. I'd have to sit down with their parents and have a conversation about repeating a year," JJ said.
The other side
This is a complicated issue, and in a part-time, term-limited, revolving-door legislature, new members must always get caught up to speed. Experienced legislators said the same goes for Florida's Agency for Persons with Disabilities.
MORE: Waiting for help: More than 21K of Floridians with developmental disabilities stuck in backlog
"I mean the turnover is great. I think that has a lot to do with those funds not being expended," said State Rep. Kelly Skidmore, (D) Palm Beach. "You get somebody who comes in, and they're trying to figure things out. By the time they figure half of it out, they leave and somebody new comes in."
JJ and others said prior legislatures also tried to downplay the backlog.
The backstory
A couple of years ago, they passed a law to replace the term 'wait list' in statute and records with the term 'pre-enrollment.'
Current legislative leaders still call it a wait list and are plugged into the situation and taking steps to try to clear the backlog. However, JJ and some others fear one of their biggest moves could backfire.
What's next
In 2025, the state opened a voluntary, pilot program for home-based services in parts of the state. Families can give up their spot on the wait list and get support through a private managed care plan instead of waiting to get it directly from the state. Florida lawmakers have an interest in expanding it to everyone on the wait list.
PREVIOUS: FOX 13 investigates wait list for developmentally disabled citizens
"It looks great that you've got all these benefits, but when you actually try and use them, then you just hit a brick wall. You slam into a brick wall," Alison said.
She's referring to their experience with private managed care through Medicaid – for medical benefits. They're not happy with how it tends to JJ when he is sick, so they are concerned about the idea of extending it to his daily living needs.
For the past year, Alison tracked how JJ's medical appointments turned out with Medicaid's managed care system.
"Thirty-four rides didn't show up" Alison said. "Out of 40, the last 40. And then they'd say, we've resolved your complaint, resolved your grievance. We'd get a letter, and the same thing would happen next time."
JJ continues to travel across Florida to discuss this with state lawmakers. They plan to review feedback from participants in the pilot program before passing additional legislation to expand it.
The Source
The information in this story was gathered by FOX 13's Craig Patrick.
WATCH FOX 13 NEWS:
STAY CONNECTED WITH FOX 13 TAMPA:
Download the FOX Local app for your smart TV
Download FOX Local mobile app:Apple |Android
Download the FOX 13 News app for breaking news alerts, latest headlines
Download the SkyTower Radar app
Sign up for FOX 13's daily newsletter
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Yahoo
9 hours ago
- Yahoo
Hidden charges? Patients often face massive bills when Florida hospitals don't provide costs upfront
A Jacksonville woman posted on Facebook a $3,000 hospital bill for an MRI of her foot. 'Paying $3,000 for something that costs $400 … pretty absurd,' she wrote. For Floridians, knowing how much a procedure costs before getting hit with a humongous hospital bill can be the difference in whether someone struggles for years with medical debt. Now, Florida's attorney general announced he is launching an investigation to ensure hospitals provide patients with transparent pricing for medical services. Florida hospitals are supposed to make it easy for patients to know costs upfront and compare prices. However, it is not happening in the way federal and state laws require. Try to compare the cost of a chest X-ray or colonscopy at hospitals anywhere in the state and you will discover that many fail to provide clear and accessible pricing information on their websites. 'Hospitals know the prices to the penny, and the amount of profit they will make,' said Cynthia Fisher, founder and chair of 'They know what insurance plans pay and the cash prices. Yet, it is egregious and deceptive and unfair to make every patient sign that they will financially cover whatever the hospital chooses to charge them without knowing what the cost will be.' Shoppers in Florida are savvy consumers, comparing prices of property insurance, gasoline and cruise vacations. However, when it comes to price shopping for healthcare services, many Floridians are unaware that, before they get care, by law, they should be able to compare prices at different hospitals or look up cash versus insurance prices within the same hospital for a medical procedure or service. Patient advocates say hospitals often require that patients give their electronic signature — accepting full financial responsibility — without providing them any information on prices. 'If one hospital charges $3,000 for an MRI and another charges $7,500, that difference is a lot of money to a family,' Fisher said. At a time when many people choose high-deductible insurance plans, 'it matters to have price competition,' she adds. It also matters because nearly two-thirds of Americans delay care each year for fear of financial ruin. President Trump mandated in 2021 that hospitals and insurers make prices public for 300 shippable medical services. However, it isn't happening. Changes under the Biden Administration rolled back key price transparency requirements, allowing hospitals to post estimates rather than actual prices. Trump's new order, signed in February, said that hospitals and health plans 'were not adequately held to account when their price transparency data was incomplete or not even posted at all.' The president wants to create rules that will boost enforcement to increase hospital compliance and force hospitals and health insurance companies to make it easier for patients to compare the actual prices of procedures and prescription drugs. Florida Attorney General James Uthmeier's investigation aligns with Trump's recent efforts. It draws on Florida law, which states that unfair and deceptive acts and practices are 'unlawful,' including the omission of material information, such as prices. On the website of every hospital in Florida, a 'price transparency' link at the bottom will guide you to a tab that provides information on costs for services. The amount of information and the ease of accessing it vary. Many price lists are so incomplete or difficult to navigate that it is nearly impossible to figure out an actual price, conduct a rigorous comparison between hospitals, or fully compare the rates negotiated by two major insurers at the same hospital. Often, a link on the page requires a visitor to download pricing spreadsheets that are voluminous, complex, and difficult to understand. A December 2024 report by found that most hospitals in Florida are not complying with the federal rule requiring them to publish their discounted cash prices and all negotiated rates by insurance plan for all services. The organization found only 29% of hospitals in Florida are fully compliant with the federal price transparency rule — that's only 39 of 135 Florida hospitals reviewed. And only 3% of the 135 Florida hospitals reviewed provided sufficient pricing data to consumers. The report revealed wide price variations for the same service, even within the same hospital system. It found hospitals posted files that did not include all payer and plan names, or files that did not include accurate minimum and maximum negotiated charges 'By keeping their prices hidden, hospitals continue to block consumers from their right to compare prices and protect themselves from overcharges,' Fisher said. 'Over 92% of healthcare is planned. Scheduled. We, by law, are supposed to have prices before we receive care.' Ilaria Santangelo, director of research at PatientRightsAdvocate, said that Florida's insufficient transparency mirrors a national lack of transparency. Of 2,000 hospitals in the U.S. reviewed by the organization, only 335 hospitals (16.8%) were found to be sufficient in their disclosure of dollars-and-cents prices. 'The rest of them posted unaccountable, incalculable prices,' Santangelo said. 'What good is a pricing file that doesn't contain prices?' To help patients navigate healthcare costs, Florida offers the Health Price Finder tool. You can search by procedure name, select locations (county, city, zip), and see a comparison of average or typical charges. The finder, though, provides cost estimates and averages that may vary from actual charges. 'An estimate can be off by thousands or tens of thousands of dollars,' Santangelo said. 'Averages are not real prices. What happens when you are charged an above-average price? How do you dispute that?' Matt Ungs, founder of Patient Fairness, said he regularly receives calls from Floridians outraged by hospital bills exceeding six figures. '(Hospitals) are relying on people to shrug and pay the bill, but the more people who push back, the more likely hospitals will change their conduct,' said Ungs, whose company disputes medical bills for clients. A Central Florida woman who received an outrageous bill made national headlines a few years ago, drawing empathetic responses. In December 2021, Bisi Bennett ended up with a hospital bill for more than a half-million dollars after giving birth — despite having health insurance. Her son was born prematurely at Advent Health Orlando and rushed to the NICU, where he had a two-month stay. During that time, Bennett's employer changed health plans. The hospital billed her $550,000. After numerous calls to straighten it out, she was sent the same bill again, with a payment plan of nearly $46,000 a month. After a media inquiry, the hospital lowered the bill to just $300 total. Fisher said her organization wants to protect patients from overcharges and force hospitals to follow federal and state law. Under the Florida No Surprises Act, patients have the right to a Good Faith Estimate, which is an estimate of the cost of services. It offers protection from unexpected, or surprise, bills when a person receives care from out-of-network providers at in-network facilities. Ungs said while estimates are helpful, knowing the exact cost in advance is more useful. 'Patients have a right to real prices, and they need to start demanding them. You can only fight an overcharged bill with an actual price, not an estimate.' On May 30, Florida's attorney general released a video on X in which he addresses Floridians about Trump's actions to enforce price transparency. 'My office is going to help the President deliver on his mandate,' Uthmeier said. Subpoenas are part of an investigation 'related to patient charges, disclosures, billing practices, price transparency, and surprise billing protections,' he said. The hospital systems targeted by Uthmeier's subpoenas include AdventHealth, with more than 30 hospitals in Florida, and Southern Baptist of Florida in Jacksonville, with about a dozen hospitals in the state, according to Fox Business. Neither health system responded to requests for comment or to answer questions about the subpoenas or their efforts for price transparency. Southern Baptist of Florida's website appears more transparent than many others in the state. It provides a tool to estimate costs, even for those who are not existing patients. It can be searched by insurance plan or cash. The tool offers a good example of why a patient would want to shop around: For a procedure such as a colonoscopy, cash prices differ between hospitals within the Southern Baptist system — a colonoscopy at Baptist Clay is $5,121 and at Baptist Jacksonville, $5,546. Uthmeier would not provide any confirmation or elaboration on which Florida hospitals received subpoenas, whether those hospitals will receive fines, or how he plans to enforce price transparency rules. Numerous requests from the South Florida Sun Sentinel for more details went unanswered and a request for an interview was denied. Jaime Caldwell, president of the South Florida Hospital and Healthcare Association, said local hospitals have devoted time and resources to make price tools consumer-friendly. They have had much to overcome and still have more work to do, he said. 'Hospitals need to better integrate their IT systems to make the required data more readily available … these improvements are happening,' he said. 'It's a long road and hospitals have made the journey toward providing their patients with the financial information that they want to make an informed decision.' A spokeswoman for the Cleveland Clinic of Florida offered this written response about price transparency: 'For patients to understand their potential financial obligation for care, it is recommended to first check with their insurance provider, who has access to all of the detailed information about their personal coverage. Estimates for care are available to patients when scheduling surgical and diagnostic services and upon request for all other services.' It was noted that patients can access their own estimates for 300 services through their MyChart account or the Cleveland Clinic's website. 'Our financial advocates are also available to help patients understand and calculate their potential financial obligations before they receive care,' the spokeswoman said. After Uthmeier announced his investigation into hospital price transparency, Mary Mayhew, president/CEO of the Florida Hospital Association, provided the South Florida Sun Sentinel a written response: 'Florida hospitals have invested time and resources to develop responsive, easy-to-use tools to deliver meaningful, consumer-friendly pricing information: providing patients with straightforward, personalized, and actionable information based on their specific insurance coverage and financial circumstances,' she said. 'Florida hospitals are deeply committed to preserving and enhancing the health and well-being of the communities they serve, and working collaboratively with local and state leaders to advance this shared vision of an affordable, accessible, efficient and high quality health care system.' The push for price transparency comes as roughly 100 million Americans are currently in debt due to medical costs, representing the nation's leading cause of personal bankruptcy, according to KFF Health News. Patient rights advocates said no one should pay a hospital bill without an itemized list of costs. In Florida, under the Patient's Bill of Rights, you can obtain that list, but you must request it. Price variations within a hospital system for the same care are not uncommon. Vivian Ho, an economics professor at Rice University, found at Memorial Regional in Hollywood, colonoscopies range from $550 to $6,400 depending on the insurer. Advocates also recommend printing out pricing information available on a hospital website, if available, and bringing it with you during registration. Ungs said with research and persistence, Floridians can make price transparency work for them. To dispute a bill, he suggests getting the list of Florida hospitals that are noncompliant from 'If a provider is non-compliant, that can be a reason to dispute the bill,' he said. A provision of a Florida law that went into effect last year requires hospitals to have an internal grievance process for patients to dispute charges. 'Patients need to stick up for themselves,' he said. 'Don't give hospitals a pass because they are using complex billing systems that they choose to use.' He recommends writing a letter to the hospital, and continuing to write to the hospital until you get a result. 'Perseverance is a big factor in success with this,' he said. 'Patients have to stick with it. Those who do tend to get action.' South Florida Sun Sentinel health writer Cindy Goodman can be reached at cgoodman@ or at 954-304-5908.
Yahoo
4 days ago
- Yahoo
Tampa Police get 300 new lifesaving choking devices from New York-based company
The Brief A company based in New York donated choking rescue devices to the Tampa Police Department. The devices, which are called LifeVac, create a one-way suction to remove lodged food or objects from a choking victim. These devices will be distributed to officers soon. TAMPA, Fla. - A New York-based company donated 300 choking rescue devices to the Tampa Police Department. These devices, called LifeVac, create a one-way suction to remove lodged food or objects from a choking victim. "This is just another tool for us, especially for our youth, to be out there and provide another opportunity to save a life," Tampa Police Chief Lee Bercaw said of the donation. The backstory Last month,a Tampa police officer used back blows to help save a toddler who was choking on a tomato. "That's the reason that we're getting this donation," Bercaw said Friday of the bodycam video. "[LifeVac inventor] Mr. Lih saw that video and said, 'I've got to get that product down here in a generous donation.'" "I knew as a parent, I'd be freaking out. I would be very distressed. So I tried to come up with something really simple. You push it, pull it, and that suction pulls it out," LifeVac President and Creator Arthur Lih said. These devices will be distributed to officers soon. Bercaw told FOX 13 the devices will be placed in patrol cars and will be used in schools and at Police Athletic League youth activities. Dig deeper As shown in LifeVac's online instructional video, the New York-based company said people should first follow choking protocols established by the American Red Cross. That means doing back blows and abdominal thrusts first. And if those actions don't work – or if those actions cannot be completed for whatever reason – then a LifeVac device can come into play. The U.S. Food and Drug Administration (FDA) encourages people to follow established choking rescue protocols by the American Red Cross and the American Heart Association. In an April 2024 update, the FDA said these protocols do not include anti-choking devices: "The safety and effectiveness of anti-choking devices that are being sold over-the-counter have not been established; they are not FDA approved or cleared." Success Stories Just this week, a Georgia police officer used a LifeVac device to save a driver choking on a water bottle cap. Years ago, LifeVac devices were placed in every school in Sarasota County. The Source The information in this story was gathered by FOX 13's Ariel Plasencia.
Yahoo
4 days ago
- Yahoo
DOH-Bay reminds residents of Revive Awareness Day
BAY COUNTY, Fla. (WMBB) – The Florida Department of Health in Bay County observes Revive Awareness Day on Friday, June 6. According to a news release, the DOH-Bay wants to remind residents that naloxone (Narcan) is a medication that can reverse the effects of an opioid overdose. Floridians can find Narcan for their community by calling DOH-Bay at 850-872-4455. The DOH-Bay offers Narcan at the Florida Department of Health in Bay County, 597 W 11 St., Panama City, FL, 32401. DOH-Bay offers the following information: All Floridians need to know the signs of an overdose, which include: -Small, constricted 'pinpoint pupils'-Falling asleep or losing consciousness-Slow, weak, or not breathing-Choking or gurgling sounds-Cold or clammy skin-Discolored skin, especially lips and nails-Limp body What to Do if You Think Someone is Overdosing: -If you suspect someone has overdosed, call 911 immediately.-Administer Narcan if available, lay the person on their side to prevent choking, andtry to keep them awake and breathing until emergency assistance arrives. The HEROS Program:-The Florida Department of Health's Helping Emergency Responders Obtain Support(HEROS) program provides naloxone to emergency response agencies throughout the Florida agency that employs licensed emergency responders may apply to the HEROSprogram. If You or a Loved One Needs Help:The Coordinated Opioid Recovery (CORE) Network is the first of its kind in the U.S. and aimsto eliminate the stigma of addiction and treat substance use disorder as a disease, with the same level of continuous care. Floridians battling with addiction can utilize the CORE Network for stabilization and to receive medication-assisted treatment from a network of specialized medical experts that will help guide them on a sustained pathway to healthy success. Spearheaded by First Lady Casey DeSantis, 'The Facts. Your Future.' campaign focuses onsupporting students statewide to ensure they receive prevention instruction and encouragementto protect and maintain their health, avoid substance misuse, and discourage risky behaviors sothey can thrive and flourish for life. This campaign is an interactive approach to ensure students are informed and can make safe decisions as they grow. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
