Wealthy has lived in Florida all his life and Kim since she was 6 years previous.
However in September, the couple left the Sunshine State. They packed their luggage, took their 5-year-old daughter, Abby, and moved away.
They wept as they kissed their older daughters, Katlin, 22, and Christina, 16, goodbye, leaving Christina to complete the final half of highschool with out them. They wept once more as they mentioned goodbye to their dad and mom and pals and Wealthy's job on a fishing boat and the one neighborhood they've ever identified.
The Muszynskis say they fled Florida as a result of they suppose Abby's medical insurance was killing her.
Abby was born lacking a bit of her mind and whereas in Florida had frequent, giant seizures, generally a number of in at some point, that shook her total physique. She gasped for air, and her dad and mom gave her oxygen and prayed she'd preserve respiratory, however docs warned them that any seizure at any time might imply the tip of her life.
Like practically half of all youngsters in Florida, Abby has Medicaid, the state-run medical insurance. Her dad and mom say that as a substitute of being useful, Florida Medicaid refused to pay for lifesaving medicines and took so lengthy to pay a few of her well being care suppliers that at instances, they refused to deal with her.
Advocates for kids on Medicaid say that the Muszynskis' story does not shock them and that they see households leaving a handful of different states too seeking higher Medicaid applications.
"The state has accomplished every part in its energy to help this household," Mallory McManus, communications director for Florida's Company for Well being Care Administration, the company that administers the state's Medicaid program, wrote in an electronic mail. "Our primary precedence has at all times been -- and stays -- insuring well being care companies can be found to all Floridians, particularly youngsters."
This does not ring true for the Muszynskis or for another Florida households with Medicaid.
Like Abby, Three-year-old Sofia Patriarca has extreme epilepsy and doubtless won't ever stroll, discuss and even sit up by herself. Her dad and mom lately offered their household pizzeria in Lantana and are making ready to go away Florida in December.
"Medicaid forces us to present our kids subpar care," mentioned Sofia's mom, Stefany Garcia-Patriarca.
"They deal with them like animals as a substitute of youngsters," she mentioned.
A 6-pound, 14-ounce bundle of pleasure
Kim Lutz and Richard Muszynski (pronounced mew-ZIN-ski) met at a celebration within the Florida Keys that neither of them actually wished to attend.
It was just a few weeks earlier than Christmas in 2004, and Kim's pals invited her to drive all the way down to Islamorada, on the southern tip of the Keys. The get together, they promised, could be epic.
However Kim wasn't feeling up for enjoyable. Just lately divorced, she was a single mom to Christina, then 5, and dealing full-time as a paralegal at a big multinational regulation agency.
He pals begged Kim to come back, telling her she wanted a break.
Kim lastly agreed, and her buddy Susie Little noticed Wealthy singing within the band. She thought he appeared like Kim's kind -- so clean-cut -- and he or she launched them.
Kim requested him to play her favourite music, "Candy Dwelling Alabama." He did, and later Wealthy purchased her a drink and put his arm round her shoulder and pretended to be her boyfriend when a big lecherous drunk man received slightly too shut. Later, he instructed Kim he'd solely come to the get together as a result of his buddy within the band had misplaced his voice.
Two years later, on the very same date at the very same lodge in Islamorada, Kim and Wealthy had been married. Christina, then 7, and Katlin, Wealthy's 12-year-old daughter from a earlier marriage, had been the flower ladies.
They moved into Kim's townhouse in Boynton Seaside on Florida's east coast, about an hour north of Miami, They determined to develop their household, and Kim grew to become pregnant just a few years later.
All the pieces was going nicely till slightly greater than midway by the being pregnant, when a routine ultrasound confirmed that one thing may not be proper with the newborn's mind.
A followup MRI confirmed that the newborn's mind was superb. Kim and Wealthy breathed an enormous sigh or reduction, and the remainder of her being pregnant proceeded uneventfully.
When Abagayle Rose Muszynski was born September 14, 2011, she was a 6-pound, 14-ounce bundle of pleasure.
However her left eye would not open.
Don't fret, the docs instructed Kim and Wealthy. It is most likely only a blocked tear duct. He referred them to a pediatric ophthalmologist.
"I assumed, 'OK, that is going to be superb,' " Kim remembers.
To at the present time, certainly one of Kim's worst reminiscences is watching the ophthalmologist pry open her 5-day-old daughter's eyelid with a steel instrument. Behind the lid, he discovered an abnormally small eyeball, a situation known as microphthalmia.
He instructed the Muszynskis that Abby would at all times be blind in that eye, however she might get a prosthetic eyeball and dwell a standard life. She appeared in any other case wholesome -- however he organized an MRI of Abby's mind simply to verify.
As soon as once more, Kim thought, "OK, this can be superb."
When the physician known as to present the outcomes of the MRI, the Muszynskis immediately knew one thing was unsuitable, as a result of he requested that each Kim and Wealthy come to his workplace and that they put their pediatrician on speakerphone.
They had been utterly unprepared, nevertheless, for simply how dangerous it might be.
The physician instructed them the MRI had discovered that Abby was lacking a giant chunk of her mind, a bit known as the corpus callosum that connects the precise and left hemispheres. She additionally had a number of different congenital mind defects and microcephaly, a small head.
That is when the Muszynskis realized that their daughter would most likely by no means stroll or discuss. She would have frequent seizures and would at all times want a diaper. Along with the mind defects, she would later be recognized with scoliosis and cerebral palsy.
The explanation for all these issues was Aicardi syndrome, a uncommon genetic dysfunction that impacts about 1,000 individuals in the USA, nearly solely females. There isn't a remedy.
Medical doctors have instructed the Muszynskis that their daughter most likely will not dwell previous her 20th birthday.
"I used to be shattered," mentioned Kim. "She was our dream child. We had been married and joyful and financially OK. Our nursery was embellished completely. I might simply sit and rock her and attempt to embrace the enjoyment of our new child, however I used to be so overwhelmed with disappointment and hopelessness."
A neurologist gave Kim and Wealthy directions for what to do when she had her first seizure. The couple watched YouTube movies of infants having seizures to arrange for their very own child's first time.
When it occurred, it was nonetheless terrifying.
A Christmas Day seizure
In a burgundy costume trimmed with white lace, black patent-leather footwear and an identical hair bow, Abby Muszynski celebrated her first Christmas together with her dad and mom, older sisters, aunts, uncles and cousins in Boca Raton, Florida.
Because the household was opening presents, Abby had her first seizure. She was Three months previous.
Her legs and arms jerked up and down. Her complete higher physique bowed ahead, as if she had been doing a sit-up.
"Trying again, I believe I would been in denial, that she would not actually have seizures, or possibly they might be simply delicate," mentioned Kim, who was altering Abby's diaper when it occurred. "So I used to be terrified."
Kim yelled for Wealthy, who scooped up his daughter and headed for the hospital, because the neurologist had instructed. She was later despatched by helicopter to Nicklaus Youngsters's Hospital in Miami.
"That was the worst evening of my life, to observe my child be airlifted like that," Kim remembers. "Once we received to Miami, I climbed into the crib together with her."
As soon as out of the hospital, Abby began taking an anti-seizure drug and went into day care whereas Kim returned to her job on the regulation agency.
However when the drugs did not work, the middle mentioned it could not preserve her.
"We appeared into hiring a full-time nurse for her, but it surely simply wasn't financially possible," Kim mentioned. "So I resigned a job I cherished. I ended my profession."
That is when the Muszynski household ended up on Florida Medicaid.
Florida a 'troubled state of affairs'
When Kim stop her job -- and the medical insurance that got here with it -- in spring 2012, they tried to place Abby on Wealthy's insurance coverage coverage at his work. Impressed by his spouse, he'd grow to be a paralegal and was working at a small regulation agency.
However the Muszynskis mentioned it was prohibitively costly so as to add Abby to Wealthy's coverage.
Their earnings was low sufficient to qualify for Medicaid. That they had no manner of realizing that they had been becoming a member of a system that within the subsequent few years could be harshly reprimanded by judges and the federal authorities for failing to offer sufficient companies to sick youngsters like their daughter.
In 2013, a federal choose chastised Florida Medicaid (PDF) for refusing to pay for a remedy known as utilized habits evaluation. The state's protection was that the remedy was experimental, despite the fact that it was thought-about commonplace remedy for autism by eight main well being businesses and organizations, together with the American Academy of Pediatrics, the Nationwide Institute for Neurological Issues and Stroke and the US Facilities for Illness Management and Prevention.
McManus, the spokeswoman for Florida's Company for Well being Care Administration, mentioned in response to an inquiry from CNN that "we've lately acquired approval from (the federal Middle for Medicare and Medicaid Providers) to develop protection of behavioral evaluation companies for any Medicaid eligible baby for whom this service is medically mandatory."
Then in 2014, the federal Middle for Medicare and Medicaid Providers threatened to chop tens of millions of in funding to Florida as a result of the state was limiting youngsters on Medicaid to 6 emergency room visits a 12 months, in violation of federal regulation.
In 2015, one other federal choose dominated that Florida had violated the regulation by underpaying docs. The state later reached a settlement (PDF) with the Florida chapter of the American Academy of Pediatrics, the plaintiffs within the case.
Later that 12 months, a Florida choose (PDF) mentioned the state had illegally eliminated 1000's of youngsters from an insurance coverage program for kids with particular medical wants.
Jane Perkins, authorized director of the Nationwide Well being Regulation Program, famous that this variety of authorized selections in opposition to a state in only a few years is uncommon and that the letter from the Middle for Medicare and Medicaid Providers threatening to withhold funds is uncommon, too.
"Florida matches in that group of states that is wanted courts and the federal authorities to inform them how Medicaid works," Perkins mentioned.
"Florida is definitely a troubled state of affairs. There isn't any query," added Joan Alker, government director of the Middle for Youngsters and Households at Georgetown College, who's studied Florida Medicaid for greater than a decade.
When requested concerning the points that arose in earlier years, McManus, the spokeswoman for Florida's Company for Well being Care Administration, identified that in 2013 and 2014, Medicaid within the state was transitioning to a managed care system. Such a system is outlined by the US Nationwide Library of Drugs as a medical insurance plan that has contracts with well being care suppliers and medical amenities to offer look after members at lowered prices.
"This transition has allowed our Company to carry well being plans extra accountable and focus our efforts on higher high quality of care, enhanced entry necessities and dealing as companions with advocacy teams who share our aim of higher well being look after all Floridians," McManus wrote in an announcement.
"The instances you cite in opposition to the Company all arose previous to the design and implementation of our new program," she added. "Florida's Medicaid program is at present working on the highest degree of high quality in its historical past."
Virtually shedding Abby
About the identical time judges had been reprimanding Florida, the Muszynskis began to expertise their very own Medicaid struggles.
The couple says that when Abby was 18 months previous, her pediatrician requested that Florida Medicaid pay for a wheelchair for her, but it surely refused.
"I could not imagine they would not give her one thing so simple as a wheelchair, given her prognosis," Kim mentioned.
Kim appealed the denial, and about six months later, Medicaid did pay for it.
Then it received worse.
About the identical time her wheelchair was denied, Abby was hospitalized with pneumonia. Respiratory failure is likely one of the main causes of demise for individuals with Aicardi syndrome, as they're typically too weak to cough correctly, and mucus and secretions can get caught of their airways.
When Abby received out of the hospital, her physician prescribed respiratory remedy 4 days per week. After each session, Abby breathed simpler -- and her dad and mom did, too.
On the finish of 1 session, the therapist packed up and turned to Kim. He mentioned he must cease seeing Abby as a result of Medicaid hadn't paid him for about six weeks. He mentioned he felt horrible, however his company had guidelines.
"We had been so frightened of shedding her," Kim mentioned.
Kim says she pleaded with Medicaid to pay the therapist however mentioned they received nowhere. After a number of missed periods, the Muszynskis might see that Abby's respiratory was struggling. They paid the therapist $900, and he agreed to see her once more.
Kim says that at numerous different factors, Abby's feeding, occupational and bodily therapists additionally stopped seeing her as a result of Medicaid hadn't paid them. Ultimately, the therapists had been paid, they usually resumed caring for her.
In line with Kim, Florida Medicaid additionally initially refused to pay for a lot of the drugs Abby was prescribed to stop seizures, despite the fact that her docs had been adamant she wanted these explicit medication.
"I used to be preventing them consistently, interesting their selections, writing emails, arguing with them," Kim mentioned.
Utilizing the abilities she'd realized in her authorized coaching, Kim says, she finally prevailed, and Medicaid paid for the medication.
There was one drugs, nevertheless, that she could not get Medicaid to budge on, irrespective of what number of hours she spent calling and emailing and arguing. It was Diastat, a drug that may cease a seizure earlier than it kills her.
Kim says Medicaid would pay for under 4 doses of Diastat a month, despite the fact that Abby was having about eight to 12 giant, or grand mal, seizures a month.
She mentioned the household could not afford to pay for extra doses out of their very own pocket: It prices about $250 a dose, and in early 2014, when Abby was 2, Wealthy was laid off from his job.
Kim says that about a couple of times per week for practically three years, at any time when Abby had a seizure they usually'd run out of Diastat, they'd name the paramedics and wait till they arrived to present Abby a dose of the drug.
The paramedics had been there so typically, Kim and Wealthy gave them their storage door code.
The Muszynskis panicked each time they known as the paramedics, praying that Abby would preserve respiratory till they arrived. In addition they questioned concerning the funds of all of it. Was Florida actually saving cash by denying Abby the Diastat? The dose value $250, however did not the paramedics value extra, particularly as they insisted on transporting Abby to the hospital for statement?
They questioned -- how a lot did these ambulance runs and hospital stays value Florida taxpayers?
Preventing to get what they should survive
The Patriarca household has questioned the identical factor.
Up till lately, Christian Patriarca ran the household pizzeria in Lantana, not removed from the Muszynskis on Florida's east coast. His spouse, Stefany Garcia-Patriarca, left her job as a lodge clerk to care for his or her Three-year-old daughter, Sofia, who has extreme epilepsy and might't stroll or discuss and even sit up.
She mentioned that as with Abby, Medicaid does not pay for sufficient doses of Diastat for Sofia, and they also typically should name paramedics once they run out. As a substitute of paying for a $250 dose of Diastat, taxpayers pay for the paramedics to reach and take Sofia to not one however two hospitals, as she must be stabilized on the closest hospital, which does not have neurology companies, after which taken to a second hospital farther away, which does.
Garcia-Patriarca additionally mentioned that for repeatedly scheduled appointments with Sofia's neurologist at a Medicaid clinic, they used to attend for 4 hours in a small room filled with a couple of dozen different youngsters and their households. When the kids made noise, it generally triggered Sofia to have extra seizures.
After dad and mom complained concerning the wait, she mentioned, the clinic was moved to an workplace with a extra spacious ready room and solely two-hour waits. However that workplace could not do easy procedures like taking blood, so she'd should take Sofia to a lab or the hospital.
The additional journey was a pressure on Sofia, who's medically fragile, and her household questioned the monetary knowledge of a separate go to for one thing so simple as a blood draw.
The Patriarcas, who even have a 9-year-old daughter and Four-year-old son, plan to go away Florida in December.
"We determined we simply could not wait any longer," she mentioned.
Heather Rosenberg mentioned she and her husband have additionally considered leaving Florida, however they each work for the state.
The Rosenbergs have in depth expertise with Florida Medicaid: They have been foster dad and mom to 16 youngsters and adopted three of them. The entire youngsters have been on Medicaid.
She describes Florida Medicaid as "horrible."
"It is an absolute nightmare," she mentioned, including that she speaks as a mom, not in her function as youngsters's ombudsman on the Florida Division of Youngsters and Households.
Rosenberg describes most of the similar issues as the opposite moms, resembling hours spent on the telephone making an attempt to succeed in somebody at Medicaid to repair issues. For instance, for only one problem, she needed to make about seven telephone calls and spend about three hours on maintain.
As with Abby, bodily therapists and different therapists quickly stopped seeing two of the Rosenbergs' youngsters as a result of Medicaid paid them late.. As the kids missed appointments, their dad and mom might see their growth endure.
She mentioned Medicaid additionally refused to pay for medication prescribed by her youngsters's docs, however she persevered and received the choice reversed.
Janice Mauro mentioned she and her household have consistently needed to struggle to get her grandchildren, Charlotte and Michael Wolf, what they want.
Each youngsters, ages Four and a pair of, have a neurological situation. They cannot breathe on their very own and are on ventilators. They will by no means stroll or discuss or sit up and are fed by tubes that go into their stomachs.
She mentioned Medicaid has repeatedly given her household a tough time about paying for sure medication and medical tools. Charlotte and Michael's dad and mom have talked about transferring out of state, however they do not have household anyplace else to assist with the kids, who every want around-the-clock care.
"It looks as if any manner (Medicaid) can get out of giving us one thing, they do it," she mentioned. "We do not perceive why we've to struggle so exhausting for these infants to get what they should survive."
Youngsters like Abby, Sofia, Charlotte and Michael are, in federal authorities parlance, "super-utilizers": the 5% of Medicaid beneficiaries who account for 54% of complete Medicaid expenditures, in keeping with the federal Middle for Medicare and Medicaid Providers.
"The underside line is, these are high-cost instances, and that is the place you see efforts to comprise prices, and that may trigger issues for youths," mentioned Alker, the Medicaid knowledgeable at Georgetown.
Talking usually, "All Medicaid-eligible youngsters are receiving medically mandatory companies," McManus, the spokeswoman for Florida's Company for Well being Care Administration, wrote in an announcement.
"If anybody is conscious of a kid who is just not receiving medically mandatory care, they should contact AHCA instantly. Our Company works with recipients and guardians day by day to make sure that all mandatory medical companies are being supplied."
Abby's 'knight in shining armor'
In February, the Muszynskis acquired the surprising information that Abby was getting kicked off Medicaid. After rounds of emails and telephone calls, Kim mentioned, it nonetheless wasn't clear why.
The Muszynskis determined that after years of preventing Florida Medicaid, they wanted assist, they usually discovered their "knight in shining armor" in Ben Durgan, an aide to state Sen. Joseph Abruzzo.
Kim mentioned Durgan labored nights and weekends to get Abby again on Medicaid, going all the way in which as much as Gov. Rick Scott's workplace. After a couple of month, he succeeded, and Abby was put again on the insurance coverage.
Kim says it most likely did not harm that she and Abby had lately appeared in a neighborhood TV information piece about issues with Medicaid.
The Muszynskis quickly acquired an electronic mail from an aide to Elizabeth Dudek, the top of Florida's Company for Well being Care Administration, saying Scott's workplace had requested Dudek to get on the telephone with the Muszynskis.
On June 14, the Muszynskis spent an hour on the telephone with Dudek, her chief of workers, Toby Philpot, and Justin Senior, the state's deputy secretary of Medicaid, who just a few months later would grow to be the company's interim director when Dudek retired.
The couple instructed the officers every part: concerning the therapists who weren't paid and the medicines the household needed to struggle for and particularly about how they did not have sufficient Diastat to cease Abby's seizures.
Kim says the officers instructed them they by no means ought to have been denied the doses of Diastat. They promised to research all of the complaints.
That is why the Muszynskis had been incredulous about what occurred only a few weeks later.
Abby's neurologist ordered a 24-hour statement at Nicklaus Youngsters's Hospital to determine why her seizures had been getting a lot worse. As a substitute of getting two grand mal seizures per week, she was having two a day.
Kim says Medicaid rejected the neurologist's request, saying it might pay for under a one-hour statement.
Abby's neurologist fought again, and Medicaid agreed to pay for the complete 24 hours.
That struggle might need saved Abby's life. Kim says that about 20 hours into the statement, Abby stopped respiratory. Her face and extremities turned blue. Her nurse known as a code, and a crew rushed in to pump her with oxygen and provides her CPR.
"I used to be sobbing. I assumed we might misplaced her," Kim remembers.
Abby survived and was discharged from the hospital with a prescription for the next dose of Diastat, the drugs that stops her seizures.
However when Wealthy went to the pharmacy that evening to fill her prescription, the pharmacist mentioned he could not give him the drugs as a result of Abby had been kicked off Medicaid -- once more.
Wealthy known as Kim at residence. They could not imagine this was taking place once more.
Kim, by her personal description, went ballistic. She known as Abby's case supervisor at
Medicaid and requested why it had reduce off her daughter's insurance coverage when she'd simply practically died. She threatened to sue the state.
Inside just a few days, Abby was put again on Medicaid. Kim mentioned her case supervisor apologized, explaining that Abby was kicked off of Medicaid due to a pc glitch.
For months, Kim and Wealthy had been going forwards and backwards on whether or not they need to depart Florida.
"After she coded, I mentioned, 'that is it.' I mentioned, 'I am accomplished with Florida,' " Kim remembers.
It meant leaving a lifetime behind them, however the Muszynskis wanted a spot the place their daughter might get the medical care she wanted.
They knew the place they might go: Colorado, for higher Medicaid and medical marijuana.
That is the primary a part of a sequence on well being care refugees. Learn the second half right here.
