Pure Exclusion: Twin Boys Denied Due To Disability

Updated: Jul 17


Michelle Martin with sons Axel (left) and Jaxon (right)


By Spencer van Vloten

BC Disability

July 13th, 2021


Michelle Martin was excited for her twin boys Axel and Jaxon to start daycare. It would mean new fun, friends, and experiences for the boys, while also allowing her to resume her career full-time. But, as she would come to find, BC's childcare system isn't so accommodating for kids with disabilities.


Read more about the Martin family's ordeal at https://www.instagram.com/thefightingirishmartins


EXCITEMENT, THEN WORRY


Michelle and Chris Martin were overjoyed upon learning they were expecting twin boys.


The couple, now living in Langley, prepared with all the enthusiasm of doting parents to be; exchanging name ideas, shopping for matching cribs, and keenly taking pointers from friends and family.


But shortly into Michelle’s pregnancy, they received worrying news.


Doctors discovered that the boys suffered from twin-to-twin transfusion syndrome, meaning, due to a lack of red blood cells, they were receiving inadequate oxygen and nutrients in the womb.


Malnourished as they were, the twins endured numerous health problems in utero, and were born prematurely at just 27-weeks.

Michelle at 24 weeks, and the boys shortly after being born


Axel and Jaxon Martin would spend the first 5 months of their lives at Children’s Hospital in Vancouver, where the situation looked less than promising: there were brain bleeds and strokes; they were both on ventilators; and doctors didn’t think they’d ever be leaving the hospital.


But the twins had too much fight in them, and they made it through, defying predictions and eventually moving out of the hospital and heading home with their parents.


LITTLE GUYS, BIG PERSONALITIES


The effects of their premature births grew more apparent as the boys aged. Both were diagnosed with cerebral palsy and epilepsy, while Jaxon was classified as legally blind and developed hydrocephalus, a brain condition requiring numerous surgeries.


Something else also emerged though— their personalities—and these made their health issues look tiny by comparison.

Jaxon and Michelle have fun; Axel shows off a toy


Axel, big brother by a minute, quickly developed a reputation as the more energetic of the two, always outgoing and eager to talk and play. Jaxon, on the other hand, proved to be more reserved, a great listener and a lover of music and cuddling.


And while health issues were always a concern, as the boys got older and reached toddlerhood they were coming into their own, ready to get out in the world, meet new friends, and try new things.


At least, that was the plan.


THERE’S A CATCH


With the boys’ health stabilizing and their confidence growing, Michelle finally felt comfortable with the idea of them attending daycare together.


It would offer her some respite from what were overwhelming, round the clock days caring for the boys, and also give her a chance to resume her work as a marketing specialist –which would bring in much needed income and allow her to continue pursuing a career she loved.


After touring several programs, weeding out those which had access barriers or were just plain uninviting, the family found 3 that were warm, welcoming, and fully accessible.


Being on the safe side to ensure the boys got spots, she put them on the waitlist in 2019, well ahead of time for a desired 2021 start, and everything seemed to be falling into place.


There was a catch though – when the time had come to sign up, Michelle was told that childcare worked differently for kids with disabilities: the daycares weren’t allowed to register Jaxon and Axel unless they were each accompanied by 1-1 support workers.


Michelle was told the boys each needed their own 1-1 support worker


This created a problem. Privately hiring support workers for each boy would cost thousands of dollars a month, a hefty sum which the family simply couldn’t afford to pay themselves - especially with Michelle having been unable to work.


Michelle therefore applied for support worker funding through the provincial government’s Supported Child Development program, giving them notice in November 2020 that she intended for the boys to start daycare in September 2021.


At first, the news coming from Supported Child Development sounded fairly optimistic, keeping up hopes that the funding would be coming.


But a couple weeks soon turned into months without any confirmation of funding, and eventually Michelle got the news she’d feared - there was no funding available, and the boys wouldn’t be able to attend daycare.


“PURE EXCLUSION”


Desperate to find care for the boys, Michelle kept trying her best to discover a solution.


First she proposed that instead of each boy needing their own funded worker, they could share a support worker between them, thus cutting costs.


That idea was quickly squashed by Supported Child Development, however, and no matter what else she tried –writing letters, filing complaints, or contacting advocacy organizations–the responses were the same: “I’m sorry but we can’t help you; it’s not up to us” or “there’s simply not enough funding.”


The ordeal has left Michelle at her wit’s end.


Being unable to find childcare, Michelle had to leave her job and is now self-employed, working nights after her twins are in bed.


Her income is much lower while expenses are higher, but without childcare, her career pursuits are at a dead end, an all too common experience for the mothers of disabled youngsters


her career pursuits are at a dead end, an all too common experience for the mothers of disabled youngsters

She’s also worried about being excluded from daycare means for Jaxon and Axel.


“I want them to be able to socialize and be out with children doing things. To just enjoy themselves and have fun with other kids, make friends, and build their social skills.”


But it’s something else that most frustrates her.


“It makes me so angry because it’s pure exclusion. "


"If they didn’t have a disability, we could click and add a spot for each of them to cart like that. But because they’re disabled they’re denied a place.”


ANSWERS FOR INCLUSION


If you ask Michelle what outcome she wants for this ordeal, there are 2 answers.


The short answer’s that she’d like Jaxon and Axel to be able to attend daycare, just like they’d be able to if they didn’t have disabilities.


Then they’d be able to have fun, meet new friends, and develop social skills, while she’d get a well-deserved breather and be able to resume her career.


The longer answer’s that she’d like an overhauling of how the province treats kids with disabilities –one with the flexibility to recognize that each family’s situation is different.


“Not all kids are the same. Stop having a fixed, inflexible amount of funding for supported development when different children have different needs.


"If a child needs support, and especially when they are required to have that support to attend daycare, then the child should receive it.”


Stop having a fixed, inflexible amount of funding for supported development when different children have different needs

“And don’t make funding all or nothing, so some kids with certain needs get it all, and other kids whose needs are just as important get nothing.”


For Michelle, the biggest obstacle to change, despite what she constantly hears from government staff, isn’t a lack of money.


“When I ask why things can’t be done differently, the answer is ‘we don’t have the money’, but some of these amounts haven’t changed for years and years and years.”


‘They government could support kids better if they wanted to. It’s not about the money, it’s about not caring, and that’s not the right answer for inclusion.”


There are just a couple months until the boys were supposed to start daycare, but for now the right answer for inclusion is yet to be found, and access remains denied.


Read more about the Martin family's ordeal at https://www.instagram.com/thefightingirishmartins

Spencer van Vloten is the editor of BC Disability. To get in touch, send an email to spencer@bcdisability.com!