Risking dignity to save a dollar
Mom of disabled teen upset Manitoba has stopped covering costs of diaper wipes
Cecile Desjarlais is ready and waiting when her 19-year-old son gets home from school.
But it's not so she can fix him a snack or ask about a math exam. It's to make sure his diaper is clean and he doesn't need changing.
"He wears incontinent products so, you know? I have to change a diaper," Desjarlais said, as she helped Troy take off his winter boots.
"I have to bathe him, I have to dress and undress him and I have to change a diaper. All of his caregivers have to change a diaper when they're working with Troy."
It's a reality the family has lived with since the moment Troy was born at St. Boniface Hospital, 10 weeks premature, and immediately whisked into neonatal intensive care.
"Everything was happening so fast," Desjarlais recalled.
"There were a lot of medical doctors coming in, speaking with a lot of different people, you know, 'This could be happening, that could be happening.' And over the next few weeks, we found out he had epilepsy. He was having over 300 seizures a day at that time."
That was just the beginning. Over the next few years, the family learned Troy was also autistic, had walking cerebral palsy, and was what is called "globally challenged."
In other words, he has the mental capabilities of a six-year-old child.
"His favorite books are by Dr. Seuss," Desjarlais said, as Troy waves his all-time favorite, One Fish Two Fish Red Fish Blue Fish, up in the air — his way of asking her to read it to him.
Province cuts funding for diaper wipes
Caring for him is a 24-hour job, and changing a grown man's diapers is that much more delicate and challenging.
Which is why Desjarlais was in disbelief last month when she received a letter from the province stating that it would no longer supply or finance diaper wipes.
"I know it sounds petty, but I am very concerned," she said. "Are they going to start cutting back on all of his incontinence products?"
When Troy was younger than 18 years old, he received basic medical products, including diapers and wipes, through the Children's Disability Services (CDS).
Once he turned 18, he was no longer eligible.
He's now on disability, through Employment and Income Assistance (EIA). They, too, provided month-to-month supplies, until Desjarlais received word about the diaper wipes.
A seemingly small cutback, but consider this: Troy goes through at least 100 diapers and 1,000 diaper wipes a month.
Now, Desjarlais has been told to use washcloths instead. A questionable compromise, especially in public places, she said.
"What if we're in a restaurant or something and we need to change his diapers?" she asked.
"Are we supposed to use a washcloth in the sink and then clean it out the sink? Or carry it with us? What if somebody were to walk in? What would they think? Like, this is a big health issue."
It's a matter of dignity lost for both Troy and whomever is caring for him.
"What about the other people there who have to see it or smell it?" Desjarlais said. "What about the looks they'll give us? People can be cruel."
It seems a big price to pay for small financial savings. Wipes cost about $40 a month, close to $500 a year.
Small potatoes to a provincial budget, but when you're supporting a child with special needs and living on a single modest income, every penny counts, Desjarlais said.
There are several other families facing a similar situation.
Wipes should never have been covered: province
A provincial government spokesperson confirmed to CBC News that Desjarlais won't have the wipes covered again.
In fact, the province said Desjarlais and other caregivers should never have received them in the first place. At least, not through EIA.
The province said it was an "error" on their part, and as soon as it "came to our attention," the funding was ended.
A provincial official said about 235 people were receiving the benefit incorrectly, costing the province about $50,000 per year.
The official also said while the province "is sorry for any inconvenience this has caused," they do not state why the products are not covered.
As for Desjarlais, she said she will keep exploring appeal options and advocating for Troy's needs.
"Why can't they understand that this isn't a huge cost … but everything that's involved with it, him being out in the public, the finger-pointing, the health issues," she said.
"Why do I have to come public for everything in this province to know that it's happening? But I'm the only one that can speak for him. So I do. I have to pick up the battles for him because he can't."