Florida contractor cuts nursing care for 100 medically fragile children

CLEARWATER — Melissa Decampos barely had time to grieve when her daughter took her life eight years ago.

Someone had to care for her granddaughter, Toriana Hayes, who has Wolf-Hirschhorn syndrome. The rare genetic disorder left her developmentally delayed and at risk from potentially deadly seizures.

Toriana is 19 but looks about 10. She needs medication every three hours to limit seizures and for painful gas. She cannot support her weight and expresses pain or distress by banging her hand repeatedly against her ear, which has left her mostly deaf.

Her food, drink and medicine must be given through a tube inserted into her stomach. At night, she wears a respiratory device to treat sleep apnea.

Unable to be left alone, she’s had 24-hour home nursing through Medicaid her entire life, Decampos said.

But in March, Sunshine Health, the company contracted to run Florida’s program for medically fragile children, determined that level of care was “not medically necessary.” It reduced Toriana’s nursing schedule by half.

Since then, Decampos, has cared for her granddaughter from dusk until dawn. She has lost 10 pounds, and her doctor told her she has sleep deprivation. At 63, Decampos fears exhaustion could re-trigger her multiple myeloma, a blood cancer that has been in remission for several years.

“I just can’t take it any longer,” she said.

It’s not just Decampos struggling. As it bids for a new state contract, Sunshine Health has cut longstanding at-home nursing services from almost 100 disabled children across Florida, according to nursing agencies.

Some families were told they will get fewer hours while others have been informed their child no longer qualifies for at-home nursing. In some cases, the denial goes against the medical advice of pediatricians and specialists, documents reviewed by the Tampa Bay Times show.

Sunshine Health officials declined to say how many denials the company has issued this year but said there has been no change in how it assesses medical needs. Under Florida law, at-home nursing provisions must be reapproved every 60 days.

“When a member’s documented clinical needs do not require one-to-one skilled nursing, our care managers offer alternative wrap-around services to support the member and their family,” the company said in a statement provided to the Tampa Bay Times.

But agencies that provide nurses are concerned at how many patients are suddenly being denied care by Sunshine Health. An official at one Florida nursing agency said about 70 of its patients have received a denial letter this year. Another agency reported 20 of its 120 patients receiving denials within a single month.

The state is paying Sunshine Health $12.9 billion to run the Children’s Medical Services program over roughly 5.5 years. It serves children and youths up to the age of 20.

The Home Care Association of Florida, a group that lobbies for home health providers, said nursing agencies have reached out to express concern. Last week, it sent surveys to its member nursing agencies to determine how many patients across Florida have received denials.

More denials could prevent agencies from getting reimbursed when parents file an appeal and nursing services are temporarily reinstated. If the appeal is lost, parents are technically on the hook for services provided after the initial denial. But 24/7 in-home nursing runs to more than $25,000 per week, well beyond what most parents who qualify for Medicaid can afford.

Lakeland mom Kayla Webb received a denial letter in March. The around-the-clock care her 11-year-old son Dylan has had since kindergarten was cut to eight hours a day.

Dylan, whom Webb adopted from foster care, has multiple medical issues. A defect in his heart’s upper chamber causes it to beat erratically, which can trigger palpitations, shortness of breath, fatigue and dizziness. He has cyclical vomiting syndrome, which if not treated early when it flares up can lead to him losing 20% in weight within days. He is prone to blood clots and has autism spectrum disorder, which can lead to severe aggression.

Webb’s appeal documents include letters from medical and psychological departments at UF Health Shands and Nemours Children’s Health in Orlando.

“Denying medical services places the child at severe medical risk,” Nemours stated.

Sunshine Health denied the appeal. The case will be decided by a hearing officer from the Florida Agency for Health Care Administration.

Sunshine’s initial denial stated 24/7 nursing was not needed since Dylan doesn’t have a tube in his trachea to breathe, nor does he rely on a ventilator.

“There is no reason that some of your child’s personal care needs could not be done by home health aide services,” the company wrote in its initial denial.

But aides are not licensed to give medication nor perform medical procedures in an emergency.

“This is putting these kids’ lives at risk,“ Webb said.

Webb started a Facebook support group for parents battling with Sunshine. She so far has heard from 25 families denied care.

Dylan’s nursing has been reinstated pending her appeal, but the nurses who knew Dylan and whom he trusted had already moved on to other assignments.

She hasn’t been able to find other nurses willing to take on a child with such complex conditions.

Sleight of hand?

Florida is still under a federal injunction for violating the Americans with Disabilities Act for its treatment of medically fragile children.

The injunction came from a 2013 lawsuit brought by the U.S. Department of Justice after it found that nearly 200 Florida children with disabilities were unnecessarily segregated in nursing facilities when they could have received care in their homes.

After a two-week trial, a federal court in Fort Lauderdale in 2023 ordered that Florida provide skilled in-home nursing care so parents are not forced to put their children in long-term care institutions.

The injunction sets benchmarks that have proven difficult for the state to reach, especially since the pandemic, when Florida, like most of the nation, struggled to train enough nurses to meet demand.

It requires that nursing shifts for children with 24/7 home care must be filled at least 90% of the time. The benchmark for children approved for fewer nursing hours is 70%.

The injunction is set to expire July 14, and the state is expected to argue it should not be extended, said Matthew Dietz, a professor and clinical director of the Disability Inclusion and Advocacy Law Clinic at Nova Southeastern University.

Its argument would be bolstered by consistently hitting its benchmarks, something that the current spate of denials would make easier, Dietz said.

“My concern is this is a sleight of hand in order for them to comply with injunctions set by the court,” he said.

Sunshine Health is bidding for the next Children’s Medical Services contract and may be keen to show that it can lower costs, Dietz said.

Officials at the Florida Agency for Health Care Administration declined to answer questions about whether the spate of denials is linked to the injunction or the award of the next contract.

“There have been no changes to the policies or authorizations,” Mallory McManus, agency chief of staff said in an email. ”Medicaid still covers all medically necessary services for children enrolled in the program.”

The appeals process is time consuming, with families given only 10 days to compile and file the necessary documents, including letters of medical necessity from doctors and nurses.

“People with medically fragile children do not have the time to fight cases,” Dietz said. “They have a hard enough time caring for their own kids.”

Nursing needs

Sitting on the floor of her home in Holiday, Daina Rogers reads “Brown Bear, Brown Bear, What Do You See?” over and over to her son, Mayik Vallejos, while a video of the book being sung plays on a handheld screen.

Finally, he loses interest and she can feed him.

She heats up corn dogs, cutting them into bite-sized pieces. When she places them next to Mayik on the couch, his arm lashes out, sending some of the food onto the floor.

If Rogers feels frustrated, she hides it well. She summons her two dogs, Rocky and Crystal, to eat the fallen food. She distracts Mayik with a video of one of his favorite nursery songs. He’s quickly engrossed and, every so often, reaches out for a mouthful of corn dog.

Mayik, 10, has tuberous sclerosis complex, a genetic disorder that causes non-cancerous tumors to grow in various organs, including the brain. The tumors can cause seizures.

He also has been diagnosed with Lennox-Gastaut Syndrome, a severe form of childhood epilepsy characterized by multiple types of seizures. He had open heart surgery in 2020 and brain surgery a year later.

Mayik does eat by mouth, but he has a feeding tube in his abdomen as he refuses to take medication orally. He also rarely drinks enough, increasing the risk of seizures. His mom has to pay close attention to how much water is left in his sippy cup so she can supplement it by connecting fluids to his feeding tube.

For the past three years, Mayik has been approved for 130 hours per week of at-home nursing. A single mom with four other children, two of whom still live at home, it meant that Rogers could work two jobs as a Pizza Hut manager and DoorDash delivery driver.

In February, Sunshine Health cut Mayik’s weekly nursing hours to 80.

“He can eat and drink by mouth,” the denial letter stated. “He does not have any continuous skilled nursing needs.”

Her initial appeal included a letter from the Johns Hopkins All Children’s Hospital Institute for Brain Protection Sciences stating that an overnight nurse could identify and treat Mayik in the event of a night-time seizure, when the risk of Sudden Unexpected Death in Epilepsy, or SUDEP, is greatest.

“He continues to have daily seizures as well as concern for night-time seizures,” the letter states.

It was denied. Her case is headed to a Monday hearing.

Without overnight nursing, Rogers tries to stay awake with her son. In just a few hours, her other children will need attention, especially Logan, whom she is homeschooling since he has attention deficit/hyperactivity disorder and oppositional defiant disorder.

There is cooking, cleaning and grocery shopping to do.

“I can’t do everything myself,” she said.

Rogers would have benefited from a Florida bill approved last year allowing parents and other caregivers to be paid as home health aides if they complete a training course. But the bill did not include a provision to ensure that the extra income did not affect their eligibility for Medicaid. A bill to add that has passed both Florida legislative chambers this year but has not yet been signed into law.

At least once a day, Rogers puts lower-leg braces on Mayik and takes him to Anclote Gulf Park near their home in Holiday. She clambers over the playground area with him, holding his hand on its small double slide.

She is hoping she can build up his stamina to walk longer distances. At home, he can walk between rooms but is at risk of injury from falling, so he must be watched constantly.

Stuck at home

The denial of nursing services isn’t just a medical risk for the child, said Nicole Clark, CEO and co-founder of the Adult and Pediatric Institute in Stuart.

Parents of children with special needs have a much higher likelihood of heart attack, anxiety, obesity and diabetes, she said. There are also higher rates of divorce, and caregivers can end up alone and isolated.

Without help, there is also a risk of burnout.

“A lot of these families, they are stuck at home,” she said.

Rogers, 44, has been single since 2015. Her ex-husband is barred by an order from a Colorado court from having contact with his children because of abuse and neglect, she said.

She has given up dating partly because she has no time, but also she’s seen men lose interest when they realize the reality of a relationship that comes with a medically complex child.

“My family is not for most people; it is for me, though,” Rogers said. “I was chosen for this.”