By skyforbes 
To Florida’s Agency for Persons with Disabilities:
Since our son Chance was born in 2011 we were told he’d receive more support because he was born with spina bifida. I’ve had countless people tell us he qualifies for medicaid merely because he was born with spina bifida. Unfortunately, we’ve learned in the state of Florida medicaid is only offered to families with very low income, even if a child is significantly disabled. When Chance was between 3 to 4 years old I applied for Florida’s “medicaid waiver”. This waiver indicates it is in place to support any person with a disability like spina bifida, regardless of income. In fact, Florida’s Agency for Person’s with Disability web site lists spina bifida as a qualifier for this waiver. I sent in this application several years ago accompanied with documentation. It was returned within a few months denied.
The reason our son was denied Florida’s medicaid waiver was because the office handling applications did not feel there was enough proof that he was born with spina bifida and they claimed there was no evidence that his spina bifida was not cured. I did send in medical documentation, but apparently the personnel approving applications didn’t feel the documentation was adequate enough. Feeling frustrated, I put the application aside as we continued to support our son through the challenges he‘s faced over the last few years.
Why do I (and many other parents) feel frustrated? To start, let me introduce you to my son Chance, born with the most severe form of spina bifida (myelomeningocele).
Chance is currently 8 years old and is a smart and active child. If Florida’s Agency for Persons with Disabilities needs proof that he was born with spina bifida I’d gladly resend medical records. It is discouraging to know an agency that is in place to support people with disabilities doesn’t even know enough about the disabilities that it is offering support for. Spina bifida is a birth defect that begins within the first month after a baby is conceived. In that first 28 days the neural tube does not fully form leading to the birth defect. Spina bifida cannot occur after birth. If you need more evidence, here’s one of his first pictures to prove he was born with it. This is his fetal MRI that was taken when I was 20 weeks pregnant. If you take a close look at his spine you can see his defect near the bottom of his spine. It gets no more real than showing you proof that his birth defect was present before birth – while he was still in the womb.
If I need to provide more proof, I’d gladly show the photographic evidence. This journey has not been easy and I pray you can acknowledge why my son deserves support.
I only had mere seconds to touch my son before he was taken off to the NICU and wrapped in a plastic bag to help protect his spine so that he didn’t get any serious infections.
He endured surgery at just 4 hours old to repair his defect. This repair was NOT a cure. It merely protected his spine and his body so that he could survive and spend the next 18 days in the NICU.
In addition to spina bifida he also was born with hydrocephalus. At just one week old he endured his first brain surgery to place a shunt. This device helps drain CSF from building up in his brain. Without a shunt the fluid could have created enough pressure that he could have experienced brain damage. The shunt helps him, but also comes with many risks that require regular monitoring.
Within a short time we grew to feel incredibly blessed to have this boy in our lives. But I can’t deny that this journey has been hard. Do you have any idea the challenges we’ve faced in the past 8 years? When a family checks off that box on your application for services I pray you know they likely do so after experiencing immense hardship.
Chance’s shunt helps keep him alive, but it has also come with challenges. We learned early on how easily the device can malfunction. Our neurosurgeon informed us they are predicted to malfunction 50% of the time. And every time we suspect it is failing we are sent to our local ER and brought right back into an emergency surgery.
It was never easy sending our son back to surgery, but it was equally difficult watching him recover every time.
Our local hospital became like a second home. My instincts often could predict when Chance would need a new shunt. I began to hate how accurate my instincts were in his first year of life.
I can sense that many may perceive a child with spina bifida to be a burden to care for. Yes, we have faced the depths of hardship, but I assure you this boy has and always will be an amazing blessing. He continues to need the support that all children with disabilities deserve.
It’s one thing to face the uncertainty that comes with medical moments, but raising a child with spina bifida is costly. We are fortunate to have private medical insurance through my husband’s employer, however, our costs have been outrageous over the years. Every time Chance’s shunt would show signs of failing we have had to go to the ER. In his first year or two of his life our insurance provider required a $750 co-pay with the intent to discourage emergency services (versus seeing primary care doctors). However, we had no other choice and had to advocate to waive and reduce costs that were unreasonable given our circumstances. A shunt malfunction is an emergency and unfortunately it has lead us to the ER too many times to count.
We have witnessed just how resilient this kid is. He is not a burden and does not need pity. But he does deserve support so that he can live the best life possible. By the time Chance was 8 months old he endured 11 surgeries, 8 of which were due to his shunt. But through all the tough moments, he arose again and again – smiling.
By the time Chance was a year old the medical moments began to settle down. If Florida’s Agency for Persons with Disabilities requires more proof that he still has spina bifida – here he is just over a year old openly sharing his birth defect. I pray someone within your office educates those approving applications to not just blindly deny applications, but instead personally contact families to clearly tell us what more you need. I sent medical documents years ago, but apparently they were not enough.
Because of Chance’s spina bifida he’s had to do a lot of therapy which we began before he was a year old. Due to all of his surgeries and his spina bifida, he was delayed. He didn’t learn to sit independently until he was more than a year old. We have worked hard to support his needs and rejoiced seeing him meet milestones.
Between 18 to 24 months he began to learn to take his first steps. Therapy at our local hospital is costly, but necessary. The hospital bills our insurance nearly $900 an hour for him to get stronger and learn to walk. We are fortunate to have insurance, but even with insurance the costs to help him get therapy here are well over $300 an hour after insurance negotiates a lower cost.
It wasn’t long before Chance got the hang of that walker and it opened up a whole new world for him. His disability doesn’t prevent him from being a silly and outgoing child who loves his life.
His spirit has always showed us that with the proper care and support he’ll surpass everyone’s expectations.
We learned when Chance was 2 1/2 years old that he also had abnormal EEG’s. This added a diagnosis of epilepsy to the long list of things that may affect his life. People born with hydrocephalus and shunts are at about a 20 to 30% risk of having seizures. We learned this after he went through a sleep study before a surgery.
He faced his 12th surgery at just 2 1/2 years old for a chiari decompression. Due to his chiari II malformation (that often happens with spina bifida) he began to experience symptoms and developed a syrinx in his spine. Yes, another diagnosis – syringomyelia – meaning a collection of CSF within his spinal cord. The pressure within his spine can cause symptoms and decreased function. The surgery helped decompress the area of his brain that experienced pressure from his chiari. This surgery involved his neurosurgeon removing a small portion of the base of his skull which enabled his CSF to flow more properly and helped decrease the size of his syrinx. After this surgery Chance began to be more mobile and our nearly non-verbal child began to talk just as well as other kids his age.
As Chance grew we met with his orthotist every 6 to 12 months to have him custom fitted for AFO braces to support his legs. Due to his spina bifida he is partially paralyzed and requires the added support to protect his legs and strengthen them so he can take steps. As long as he walks he will likely always need braces to support his legs. Orthotics aren’t cheap – they often costs 2 to 4 thousand dollars for each set that are custom made for Chance.
We also learned as he grew that spina bifida impacted him in other ways. He has another diagnosis of a neurogenic bladder and bowel. This just means the nerves damaged in his spine also impact his bladder and bowel function. By the time he was 3 1/2 years old we learned we’d need to intervene to help him manage his care. Without catheterization and a bowel management plan our son would get very sick.
A serious UTI made me so much more worried than a shunt malfunction ever had. It lead me to advocate to begin the care needed to help our son stay as healthy as possible.
One of the biggest concerns for to a child with spina bifida is their urological health. This is a care that does not suddenly go away or get cured, in fact, we must advocate for support because it will be one of his greatest needs as he gets older. If we do not take measures to keep his bladder and kidneys healthy he could face risks for renal failure later in life.
Shortly after his serious UTI we began clean intermittent catheterization and bowel management to help him stay as healthy as possible. I pray we never have to see him this sick again. Now that we do this care we are able to help him achieve social continence. This care is something that will be required for life. Catheters typically cost hundreds of dollars a month and the peristeen used for bowel management annually is comparable to the cost of a new car.
At a young age we helped Chance learn to swim. It helped keep him active despite his mobility limitations. Swimming helps him think less about his disability because it is something he does well and enjoys.
Before Chance turned four we began doing more intensive physical therapy with Believe Physical Therapy. Their team was impressive and engaged Chance to grow even stronger.
As we witnessed how much fun Chance had in a trial session, we learned this therapy was not covered by private insurance. We fundraise to help meet our son’s needs.
Over the last few years this therapy has helped him stand for longer time periods independently and take more steps independently.
Chance’s abnormal EEG activity requires us to have him undergo 24 hour EEG testing every 6 to 12 months. This test is his least favorite of all of his tests due to the 20+ wires they adhere to his head to conduct the test. We repeat testing with hopes it will resolve or go away, but unfortunately he continues to have activity that puts him at risk of having a seizure.
When he was four he also experienced another shunt malfunction. He made it nearly 3 1/2 years without a malfunction. This incident reminded us just how easily the device will stop working.
Just before Chance turned five years old we began to witness many symptoms indicating his spine was tethered. We saw signs of his mobility, bladder and bowel function decreasing and he began to experience more pains in his back, head, neck and belly. Yes, another diagnosis — tethered cord. As children with spina bifida grow the scar tissue often attaches to the nerves impacting their function further. Before this kid turned 5 he endured his 14th surgery to detether his spine. Here he is bravely sharing his scar to prove that spina bifida remains an impact in his life.
This surgery came with pain and recovery was not easy for him.
But once again, he often smiled through the toughest of moments.
Chance recovered from his 14th surgery with great results and grew stronger than before. He began to stand for longer time periods and grew more confident in his abilities.
Chance received his first wheelchair when he was three. By the time he was five he grew so confident and learned to move super speedy with his wheels. Chance uses a wheelchair for longer distances, however, as he ages he will likely be more reliant on it to increase his independence as he navigates the world.
I pray your staff understands that spina bifida has no cure, and the effects of it can lead to many medical moments that can happen at any moment. A family applying for Florida’s medicaid waiver should NEVER be questioned if spina bifida has been cured until a cure has been found.
Chance’s shunt continues to keep us on our toes and lead us to seek emergency medical care anytime he is symptomatic. A surgery fixes the problem, but the problem can arise again at any time. In 2017 Chance experienced another shunt malfunction – leading him to his 15th surgery to replace his shunt.
This young boy has been through countless tests to help doctors understand what is going on so they may treat him. As he grows older some tests are becoming a little easier for him to tolerate, but it never gets easier when we know we can’t prevent this from happening again. The most we can do is act when we know he needs care.
This shunt malfunction was especially difficult to diagnosis because the valve became faulty and it took a specialized test to determine what was going on. For more than five days we watched as he coped with a shunt that was malfunctioning. Chance was very lethargic and fussy with painful headaches. Most of those five days he spent sleeping or crying.
We were thankful the shunt revision helped him, however, within a few weeks he experienced more issues and we learned the tube of his shunt had somehow broken. He returned to surgery to fix the problem and endured his 16th surgery.
His medical team is proactive and continues to conduct sleep studies every few years to ensure he is not experiencing any sleep apnea. With spina bifida and a chiari II malformation he could experience sleep apnea which can impact a person’s health. He hates this test, however, it helps us monitor to ensure apnea concerns are not a problem for him.
When Chance was six he got to experience WCMX for the first time. The sport helped him meet other people who relied on a wheelchair and helped him realize just how much he can do in his chair. He gradually grew more confident and independent in his chair because of WCMX.
When Chance turned seven he showed a strong desire to take more steps. Within a short time working with his therapists he managed to take 12 independent steps.
Chance was born with multiple disabilities, however, his strongest ability is knowing how to adapt to the challenges that arise in his life. He loves his life and just like any kid, he loves to have fun and do things like play baseball.
And even when he isn’t able to play on competitive sports teams, he joins his brother’s team in the dugout.
He loves most sports and really loves that sports like sled hockey allow him to play without his disability preventing him from participating.
No cure means my son will endure tests routinely more often to help keep him healthy. That eeg test that he hates will always be a part of his life. Nothing makes putting those wires on, or taking them off, any easier. But preventing seizures is critical to keeping him alive. Even now that he is a little older, these tests are still very difficult for him.
Thankfully now he has a faithful friend to join him during his medical moments. It doesn’t make the moments easier, but it does help to have a friend by his side.
Chance continues to participate in WCMX and has grown to love being “fast and furious” as he rolls throughout the skate park doing tricks with his friends. Even though he’s been through tremendous medical challenges, he still has dreams and aspirations and has become such a daredevil. Earlier this year he dreamed he’d win “first place” in WCMX. He earned 1st place as a beginner at a local WCMX event.
This spring Chance had to undergo a bladder treatment to help try to further control his bladder. We’re learning that his urological health is a concern that may require much more attention as he grows.
Do you need proof that Chance still has spina bifida? Do you need proof that it hasn’t been cured? I pray this photographic reflection of his journey living with spina bifida will help you see why he deserves support from Florida’s medicaid waiver. Please educate your team that spina bifida is a lifelong journey. I pray now that your team will look more deeply at ALL individuals living with spina bifida and APPROVE their medicaid waivers. It should NOT take decades to grant a waiver for a child with a disability, especially for a child with spina bifida. Chance is only 8 years old and has already endured 16 surgeries and may soon require additional surgeries for other concerns related to his spina bifida. I don’t share this story to seek pity or sympathy, but hope I can make the state aware of just how desperately children with spina bifida need the state’s support. Our son’s medical care has lead to costly medical expenses that have surpassed millions of dollars. Thankfully we do have private insurance, however, we max out every single year – even if our son is healthy. Healthcare expenses are astronomical and families who face such significant medical hardships should not have to face this burden alone merely because we work HARD to provide for our family.
Florida is currently ranked #49 of 50 states in funding and supporting people with disabilities. Currently there are OVER 22,000 people on the waitlist. Most people born with a disability who apply for a waiver in the state of Florida wait a decade or longer to be offered a waiver. Florida, you can do better than this. Chance and his friends born with spina bifida (and ALL people born with disability) deserve better. Their lives are worth the support.
