On a late November afternoon, Vicki Fouche heats up slices of frozen pizza in the toaster oven for lunch.
Her daughter Hannah, 10, waits at the dining room table in their Ocala, Florida, home.
Hannah has challenges eating on her own. She was diagnosed with cerebral palsy, a neurological disorder that affects motor skills, muscle tone and movement, when she was 6 months old.
Vicki, 48, places two plates in front of Hannah. “Look here. Which pizza do you want? Do you want ‘The Lion King’ or Olaf?” Vicki asks, referring to the Disney characters decorating each plate. “Which would you like? Lion King? Olaf?”
Hannah replies with just a sound — one that would be incomprehensible to most. But without any words exchanged, her mom knows what’s wrong.
“You don’t want either one?” she guesses. “You want pretzel bites?”
Hannah utters another obscure sound.
“You’re a pain in the butt, do you know that?” Vicki jokes, and she whisks the plates away from Hannah, handing a pizza slice off to Hannah’s 21-year-old sister, Bethany.
Vicki heads back to the freezer to get some pretzel bites, one of Hannah’s favorite foods.
When Hannah’s lunch is heated, Vicki brings a plate over to Hannah, whose attention is fixed on the iPad in front of her. Vicki proceeds to cut the pretzel bites into small pieces and feed her.
Hannah’s condition is hypotonic, meaning she has low muscle tone — specifically in her head, neck and trunk. She can’t stand on her own, walk or talk.
Hannah has the cognitive abilities to communicate; she just lacks the physical abilities to speak more than a few words. She uses an app on her iPad that lets her select words and phrases to speak aloud for her. In fact, Vicki says Hannah often uses the app to request pretzel bites.
There are many variations of cerebral palsy. For some, the disorder has a minimal effect on their lives. Others require around-the-clock care.
According to the Cerebral Palsy Alliance Research Foundation, 1 in 323 U.S. babies are diagnosed with cerebral palsy. There is no known cure for the disorder, which affects approximately 17 million people across the globe.
Hannah’s physical challenges mean that Vicki and her husband, Tim, have to care for Hannah in ways similar to caring for an infant. They feed her. They bathe her. They carry her down the hallway and lift her into her safety bed, which resembles an oversized crib.
Hannah’s parents also shoulder all the financial responsibilities of raising a child with cerebral palsy.
The Fouches are a family of five living off less than $45,000 per year. Though Bethany, their oldest daughter, doesn’t live at home anymore, Vicki and Tim have a 6-year-old daughter, Mikayla, and they took in their 15-year-old niece, Naomi, last summer.
Tim, 48, who works as a residential construction estimator for a custom home builder, is the family’s sole breadwinner.
“I work hard,” Tim says. “As a husband and a dad, you try to maintain a balance of working and being there for your family, too, at the same time. When you do that and you still feel like you’re falling short at the end of the month… it gets frustrating sometimes.”
Why Making More Money Isn’t an Option
The family qualifies for Medicaid and Social Security benefits for Hannah, plus a scholarship that covers home-schooling expenses. But Vicki says she’s scared of the possibility of losing that assistance if her husband makes more money.
“We’re [between] the proverbial rock and a hard place,” she says.
The Fouches know other families with disabled children that don’t qualify for assistance and aren’t able to get certain treatment or equipment covered under their private insurance.
“If [Tim] were to make more money and then they took [Medicaid away], it would cost us more in the long run,” Vicki says.
Vicki usually handles paying the bills and budgeting for the family since Tim works full time.
“How she does it, I don’t know,” Tim says. “She takes something out of nothing, and she pays the bills. But it’s a struggle every month.”
The Fouches have between $10,000 and $15,000 in credit card debt. They’ve used their credit cards when unexpected expenses came up, such as when the transmission went out in their minivan last year. They’ve made home-schooling purchases on credit, only to later find out Hannah’s scholarship wouldn’t reimburse the expense.
Every year, they like to put money aside from their tax refund to save for emergencies. Unfortunately, that doesn’t stretch through the year. They don’t have any other financial safety net.
“We never have money to save,” Vicki says. “We’re lucky that we have enough to pay our bills.”
Medicaid Helps… but It Has Limits
Each week, Hannah sees a speech therapist, physical therapist and occupational therapist. She also participates in therapeutic horseback riding. Because of assistance, the Fouches don’t have to pay out of pocket for any of that.
The Fouches have also gotten some of Hannah’s equipment paid for through Medicaid: an electric wheelchair, a manual wheelchair, a walker, a shower chair and Hannah’s safety bed, plus her nutritional drinks and diapers.
“We’re very, very blessed,” Vicki says.
But Vicki says the diapers Medicaid covers for Hannah leak easily. The electric wheelchair has malfunctioned several times.
Hannah never felt comfortable in the first shower chair they were able to get through Medicaid when she was little, so her father built one out of PVC pipe and trampoline material.
Vicki says she’s glad her husband is so handy. He also built a makeshift wheelchair ramp for their front door and widened the entrance into their kitchen so Hannah’s wheelchair could fit through.
Getting requests approved through Medicaid can be challenging, Vicki says. She says the agency requires in-depth explanations about why they need certain equipment or therapy and how Hannah will benefit.
And even when something is approved, the family sometimes still has to pay for part of it. Last spring, for example, Hannah received three weeks of intensive therapy at a facility in Melbourne, Florida. Medicaid covered the cost of the therapy, but the family had to pay for travel and lodging, since the facility was three and a half hours from home.
The family sold bracelets as a fundraiser and made about $2,300.
“We ended up having to come up with some of it out of our pocket,” she says. “We raised most of it, but not [all].”
A Plan Abandoned
Vicki used to work as a Girl Scouts program coordinator, but high day care costs caused her to become a stay-at-home mom after having Hannah. She thought it would be temporary and that she’d go back to work once Hannah started kindergarten. Then, she got unexpectedly pregnant with Mikayla.
Vicki had her tubes tied after that pregnancy. With Hannah in school, Vicki’s new plan was to go back to work once Mikayla was in kindergarten. But then Hannah started having troubling experiences at school.
“She came home one time with rug burn on her cheek, a black eye, a split-open lip, and they say she fell over at circle time,” Vicki recalls, saying she suspects Hannah fell off a changing table instead. “She would come home 90% of the time with her lunch [uneaten].”
The Fouches were concerned their daughter wasn’t getting proper care at school. Two weeks before Hannah was going to start third grade, her parents told her she’d be going back to school soon. She cried hysterically.
“What kid at 8 years old hates school so bad?” Vicki asks.
So the Fouches made the decision to home-school their girls, and Vicki abandoned her plan to return to work. Though Vicki does a lot for her family, she sometimes feels bad that she isn’t able to earn an income. However, Tim says he’s very thankful for the role she’s taken on.
“[It’s] worth a whole lot for her to be with our children, to keep them safe and [see to it] that they’re taken care of and getting a good education,” he says.
That’s not the only sacrifice the Fouches have had to make.
Vicki says they choose not to go to places as a family that aren’t accommodating for Hannah, like the playground or the fair. If Mikayla wants to go, she has to wait until one parent can stay home to watch Hannah.
The Fouches try to make sure Mikayla gets to do things she likes — such as gymnastics and T-ball — but the money isn’t always there for her to participate. Vicki says they had to charge T-ball registration fees to their credit card. They pay per class for gymnastics, and when money is tight, they’ll just skip it for the week.
One special treat the entire family enjoys is going to Disney World, which is only about an hour-and-a-half drive from their home. Last year, the Fouches had annual passes. They got them as a Christmas gift for the girls and paid for them in monthly installments. However, Vicki says they decided not to renew the passes for this year after Disney raised its prices.
“That’s been really frustrating,” she says. “That’s really the only thing that we do with the kids… Hannah doesn’t feel disabled at Disney. She can go on all the rides. She can’t do that at all the other parks.”
Their Plans and Dreams for an Uncertain Future
About a decade ago, when Hannah was diagnosed with cerebral palsy, Vicki remembers the doctor explaining the diagnosis twice.
“I guess most people get hysterical and we didn’t, so the doctor [asked], ‘Do you understand what I’m saying to you?’” she says.
But Vicki and Tim knew something serious was wrong with Hannah. Their infant daughter wasn’t meeting typical milestones for her age. Unbeknownst to each other, they both had suspected it was cerebral palsy.
Instead of being devastated, they were grateful Hannah didn’t have a terminal illness, but rather a disorder that can improve over time through therapy.
And the Fouches have seen Hannah progress over the years. She can sit up unassisted, whereas before her body wasn’t strong enough to support itself.
One speech therapist told the Fouches that Hannah would never be able to work a communication device.
“She said she would never be strong enough to push the buttons on the communication thing,” Vicki recalls. “And yeah, this kid’s a whip on the iPad. It’s not even funny.”
In early December, Hannah was fitted for a leg brace that will keep her body from folding up in her sleep. Since she can’t control her limbs, it can be dangerous if she bends herself in half overnight, causing her to hurt herself or even block her breathing. Hannah often sleeps in her worried parents’ bed so they can closely monitor her.
A few weeks after getting the brace, Tim says she’s still having trouble adjusting to it. Hannah’s therapist suggested putting the brace on for an hour or two in the evening and working their way up to using it while she sleeps. Once Hannah is able to use the brace overnight and transition to her own bed, her parents will be able to get a more restful night’s sleep.
There’s still other equipment the Fouches wish Hannah had to better her life.
They’d love for Hannah to have a mobile stander, a device that would help her stand and move around without having to support her own weight.
“We can stand her for a little bit… but the last couple times we had her in her walker, she’s gotten so overheated, she’s thrown up,” Vicki says.
Having a device that doesn’t make Hannah strain to support herself would be ideal. Being in a wheelchair so often causes Hannah to have poor circulation in her legs.
However, Vicki says Medicaid won’t cover the mobile stander, because Hannah already has the electric wheelchair. She says it’d cost $5,600 to pay for out of pocket — money the family doesn’t have.
She also says it’d be wonderful to have a hoist system in the house to lift Hannah up. At 60 pounds, Hannah isn’t easy to carry anymore.
“I’m scared I’m going to fall with her,” says Vicki, who had to be hospitalized twice last year after bad falls. Luckily, she wasn’t carrying Hannah on either occasion.
The Fouches also wish they had a handicap-accessible van, but they can’t afford one. Vicki said even getting their current minivan converted to be wheelchair accessible would cost around $15,000.
Instead, they have to lift Hannah into the minivan, and they use her manual wheelchair when they go out.
Hannah’s only 10 now, but Tim and Vicki have thought about what her life will be like as she gets older. It’s uncertain what Hannah will be able to do on her own once she reaches adulthood.
“If we could have one wish for her… I would really hope at some point that she could be able to speak,” Vicki says. “I think that would make a huge difference for her, instead of having to rely on a communication device. I don’t know if that will ever happen — and if it doesn’t, it’s fine — but if I had a choice between her walking or speaking, I’d rather have her speak.”
One thing Vicki and Tim do know is that they never want to place Hannah in a nursing home. The Fouches say their faith in God gives them strength to handle all the challenges that come their way.
Overall, Vicki’s greatest hope for her daughter is one most parents have for their child.
“I just want her to have as [good of] a life as she can,” she says.
If you are raising a child with special needs, learn more about how to plan financially for your child’s future.
Nicole Dow is a senior writer at The Penny Hoarder.
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