'We should all be enraged': Ocala's vulnerable children go months without medication, care – Ocala

When Heather’s 14-year-old son Isaac, who has severe autoimmune encephalitis, a disease in which his immune system attacks the brain, suddenly stopped receiving his infusions last August, the whole family felt the effects. 

“He just cognitively completely fell apart, like to the point that we felt like we were at ground zero again before they ever diagnosed his illness,” said Heather, whose last name has been withheld for privacy reasons. “All that happened within three months. He went from doing really, really well to cognitively catatonic is the best way to explain it.” 

Isaac, who is also autistic, receives a rituximab infusion every six months that “wipes out his immune system.” IVIg (intravenous immunoglobulin) infusions are then needed to replenish his antibodies. 

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Because he qualifies for Florida’s Medicaid program, Isaac had a Staywell Health Plan under Wellcare and received his prescriptions through the pharmacy Exactus. After not receiving his IVIg therapy as expected on Aug. 20, Heather began calling the pharmacy weekly without success. 

Exactus told her it hadn’t received the prescription and referred her to AcariaHealth, the pharmacy for individuals on Sunshine Health insurance plans. AcariaHealth told her it hadn’t received it, either, and referred her back to Exactus. 

“We sent it at least 20 times to these numbers or addresses,” Heather said. “And, ‘Nope, we didn’t get it. We didn’t get it.’ Meanwhile, my son is falling apart cognitively, so as a parent I feel like a failure, like why can’t I figure this out and help my son?” 

Medication, claim denials created ‘domino effect of regression’

Heather later learned that Sunshine Health merged with Wellcare, taking over the children’s Medicaid plans on Oct. 1, and the pharmacies AcariaHealth and Exactus had also been merging during that time. 

Three months after the problem began, the prescription was suddenly filled with no explanation, but Heather fears that long-term damage has been done to her son’s health. 

Her problems with the pharmacy were only the beginning of the issues experienced by special-needs children and their providers in Marion County and across the state, as Sunshine Health subsequently began denying claims, which forced some providers to stall services to children most in need while they waited three months to be paid. 

Isaac became nonverbal again and caught multiple viruses because of his immunocompromised state during that time. 

“It’s created a domino effect of regression,” Heather said, “It affects everybody in the family because the nature of his illness.” 

Her other children are essentially quarantined from Isaac so they don’t bring any illnesses home to him, and Heather doesn’t leave the house much herself so as not to bring home a virus that could hospitalize Isaac. During the period without treatment, he would also experience sleeplessness, aggression and incontinence that affected the whole family. 

“We feel like we cannot take our eyes off of him for a second,” she said. “It’s just a 24-hour job when he gets bad like that with the insomnia, so that went on for three months.” 

No payments, no services

AnnMarie Sossong also experienced consequences of the merger on her 15-year-old son Jacob, who also has a neuroimmune brain disease. His daily care provider, Serenity Companion Service, run by Lavette Gulley in Ocala, stopped receiving insurance payments when Sunshine Health took over in October. 

Gulley provides personal care services for 26 clients and growing, and she’s been in the field for 26 years. There had been “hiccups” with other insurance company transitions that were solved quickly and not to the degree of this problem, she said. 

Every claim she had submitted for the three months starting Oct. 1 had been denied unexplainedly, leading her to close her doors on Jan. 1. 

Sunshine Health, which was responsible for paying for more than 87,000 children on the Children’s Medicaid Services Health Plan in January, issued a statement on Jan. 20 saying an IT issue caused by differences in the Sunshine and WellCare systems impacted claims payments for some CMS plan members after their takeover. 

The issues included “incorrect claims denials,” which would all be processed by the end of January, “delayed authorizations” and “claims issues for therapy providers related to new industry standard edits.” 

Sunshine Health has not responded to the Star-Banner’s request for more information about the payment issues and pharmacy merger. 

Gulley finally received her first payment the day after the statement was issued and was able to open back up on Jan. 24. She was still backlogged into February submitting her billing for the rest of her clients for every day they received services.

She has since been paid for her claims through December but is still having trouble receiving some authorizations to continue services. 

A handful of families had to find other providers in the meantime. Gulley was constantly on the phone with Sunshine but received few answers, and the stress impacted her own health. 

“I went to the hospital on Christmas Day,” Gulley said. “My blood pressure was sky high. I couldn’t see. I mean, this has taken a whole like mental, physical toll on me.” 

Other issues impacted authorizations, routine medicine

In addition to Gulley’s trouble getting claims paid, Sossong’s son just wasn’t showing up in the online system. 

“The way that I’ve been told (by a Children’s Medical Services case worker) is that the authorizations are falling into a black hole,” Sossong said. “It’s some kind of technical glitch. Because the authorizations are falling into a black hole, she can’t bill for my son.” 

Gulley provided care for free for six weeks for him. 

Though Jacob got to go back to care in early February, Sossong said “there’s no guarantee it’s going to work out” given how long he was at home.

“It’s like being at war because you’re constantly fighting back against something, fighting back against seizures, or we’re fighting back against aggressive behavior,” she said. “We’re trying to get fluids and electrolytes in balance. I mean, we’re always fighting with something and when you have no help and you’re the only one fighting all day long, something’s going to break.” 

Sossong is in nursing school herself, and her husband had been taking time off work to care for Jacob on days she has classes. She’s had to miss classes, which made it hard to maintain her 4.0 GPA, and wasn’t able to continue her work study job because she had to care for him. 

In early March, she reported Jacob was doing well at Serenity, though she is still making up for lost time at school and work.

“If you have a behavioral issues child, it’s like you’re in fight or flight all day long, and it wears on you,” she said. “It wears on your immune system. It’s just a different kind of stress. It wears on the family. It wears on marriages. It makes everything difficult.” 

Carly Slocumb was another of the local parents impacted by the merger, as her 6-year-old daughter Emma wasn’t getting her ADHD medications and couldn’t get into Serenity Companion Service as a new respite care provider when Gulley closed. 

Slocumb says her daughter “started spiraling emotionally and mentally” after being away from care and going without her medicine when Sunshine stopped paying for it after one month even though it had previously been approved by WellCare. 

“Without Emma having any services or any help that she was familiar with and having to stay home with me, I had to start homeschooling and become all of her therapists,” she said. “Emma has self-interest behavior, and she started having really bad meltdowns while we were going to the doctors trying to adjust her medicine and her adjusting to homeschooling.” 

One of those meltdowns was bad enough that Slocumb had to call an ambulance. 

“The police officer that saw her, took one look at her and put her in a Baker Act, so we end up having to sit in an ER with her and ride it out for 78 hours,” she said. 

Slocumb says some days have been a nightmare, as she’s barely able to work and their entire routine has been disrupted. 

Making phone calls can be a trigger for Emma, so Slocumb spent what little time she had calling Sunshine Health or her doctor and never received an explanation for why the insurance company suddenly stopped paying for the medication. 

Emma has since started a new medicine, but they are still monitoring her to make sure it doesn’t cause any other problems, and she is still trying to get back into a care provider. 

‘We should all be enraged’

Though not all providers have had to close like Gulley, many have been affected in some way. 

As of mid-February, Elise Caton, CEO of The Lamp Post Therapy in Gainesville, said her speech and occupational therapy clinic had only gotten its first payment of $300, a number that should have been more like $8,000 or $9,000 and was expected in January. 

The next week, they finally received the full amount. 

“(Our claims) weren’t being processed for any number of reasons that they would come up with,” Caton said. “They were blaming it on the software glitches, but, I mean, some of their glitches were codes and things that haven’t been used for a decade or more.” 

While she was aware of problems with children showing up in the system prior to the merger, she says issues like that have been “exacerbated” since Sunshine took over. 

The Lamp Post Therapy relies on a mixture of Medicaid, private pay and commercial insurance, so it wasn’t hit as hard as those that serve primarily Medicaid clients. It stayed open but had been providing services essentially for free for its Medicaid clients since October. 

“It’s a big financial burden,” she said. “The decision of do we continue seeing these kids or have to terminate your services is not a conversation we like to have ever because these are kids who, they do have a lot of need, and these are families that are already struggling with a lot of the effects that disability has on an entire family.” 

Caton emphasized that everyone should be upset about the problem because not only are vulnerable children’s needs not being met, but Medicaid and Medicare are funded through payroll taxes. 

“For us all to be paying into the system and then have companies like this who are mismanaging the funds, I think we should all be enraged, and we should all be on top of this because they’re not doing the job that they were charged with doing, and it affects every single person in the state of Florida,” she said.

Fixing a ‘broken’ system

Gulley believes there’s “a long way to go to fix the system,” and Sossong also described the health care system for such children as “broken.” She believes it was better when the University of Florida’s Ped-I-Care program, which she described as “a haven for special needs kids,” was in place years ago.  

Under the current privatized system, companies like Sunshine Health that manage Medicaid in Florida are paid a fee by the state to pay the Medicaid claims and keep whatever they don’t pay out, as long as 80% of its annual revenue is spent on medical care. Otherwise, it must issue rebates to customers.

“I don’t feel like Sunshine is a bunch of evil people. I just feel like they’re a big business. They’re a big business trying to make money, and they don’t understand the population that they took on,” Sossong said. “If they understood, then they would have put something in place so that these things didn’t happen, so that these kids didn’t lose care.” 

Other parents expressed concern about the system and questioned Sunshine’s actions. 

“It just didn’t seem like they cared,” Heather said. “I called several times a week and explained how necessary this medication was, and it was just going on deaf ears, and that’s how I felt for three months straight.” 

Another of Heather’s complaints is that Sunshine Health has not provided a nurse care coordinator, who typically would help navigate the medical and insurance system, after several requests and assurance before the merger that she would get one. 

“It’s a lot of work, and the thing with the insurance is it’s just an unnecessary issue that parents shouldn’t have to have,” Slocumb said of her experience. “We already have enough on our plate with our special needs children.” 

Contact reporter Danielle Johnson at djohnson@gannett.com.