An Alberta mother is urging the provincial government to help pay for medically necessary car seats for children with disabilities after her family spent two years seeking funding for equipment recommended for her son. Nikol Faltysova, of Canmore, says her seven-year-old son Oliver Masnada needs a specialized seat because Duchenne muscular dystrophy progressively weakens his muscles. The family has now raised enough to buy the roughly $4,200 seat, but Faltysova says it took repeated emails, applications and fundraising to get there.
“I don’t think it’s okay to be going through this process and just constantly being told ‘no,’ because I don’t accept ‘no’ when it comes to my son,” Faltysova told CTV News. “It should not be this hard. My son needs this car seat.” She says she wants to make it easier for other families who may need similar equipment.
The family first raised the need for a specialized car seat with the children’s hospital about two years ago, Faltysova said. She then contacted Alberta Aids to Daily Living (AADL), her private insurer and Family Support for Children with Disabilities, but says she was unable to obtain funding through those channels.
On Tuesday, AADL representatives contacted her and said medically necessary car seats fall outside the program’s scope, according to Faltysova. She says they told her the program concentrates on equipment that serves a broad range of Albertans, while specialized car seats are considered a transportation adaptation. The representative could not tell her which provincial program would cover the equipment, she said.
Alberta’s Ministry of Primary and Preventative Health Services said AADL helps Albertans with long-term disabilities and health conditions access basic medical equipment and supplies that support independence at home and in their communities. “As a publicly funded program, AADL balances a wide range of needs and focuses funding to support as many Albertans as possible,” the ministry said in a statement to CTV News.
The ministry said it could not comment on Faltysova’s specific case. It added that it is “actively reviewing the program to better support the needs of Alberta patients and families.”
AADL suggested that Faltysova contact Variety, a charity that can provide donated equipment to families. She says she had already approached the organization and was told specialized medical car seats are rarely available. There are relatively few such seats on the market, she says she was told, and expiry dates make them difficult to pass on to another family.
Faltysova also applied to Easter Seals and Inclusion Alberta, but says neither application was accepted. “And why do you think these charities aren’t accepting any more applications? It’s because basic equipment like this is not covered.”
She says she contacted the office of Alberta’s Minister of Primary and Preventative Care, Justin Wright, seeking help. “I have sent multiple emails, left voicemails, and nothing.”
The family ultimately applied to Muscular Dystrophy Canada and received funding for the seat. Destroy Duchenne contributed $500, and a community bottle drive raised another $1,000. Those efforts brought the family’s remaining contribution to roughly $600.
Faltysova says she is grateful to the organizations and people who helped, while arguing that charities are already overwhelmed by families seeking medically necessary equipment. She wants the province to consult those groups about what equipment is most needed and find ways to ease the financial pressure on them.
“I truly believe what the government should do, or the province of Alberta should do, is to reach out to those charities that are overwhelmed and ask them what is the equipment they need?” Faltysova said. “What’s on that list? How can we help you to unload your load, and how can we help you to provide for these kids the equipment that is going to make their life better.”
Oliver has outgrown conventional car seats and cannot safely move to a standard booster, his mother says. His physiotherapist and occupational therapist recommended the specialized seat after trialling it with him. Faltysova says he spends about six hours each week in a vehicle travelling to school, medical appointments and adaptive activities, including volt hockey and skiing. Because Duchenne weakens muscles over time, she says he needs proper support whenever he sits for extended periods.
Dr. Megan Crone, a pediatric neuromuscular specialist at Alberta Children’s Hospital, described Duchenne muscular dystrophy as an inherited condition in which muscles progressively break down and are replaced by fatty tissue. Children gradually lose strength and mobility as their muscles weaken. Boys with the condition commonly lose the ability to walk during their teenage years and eventually require wheelchairs, Crone said.
The weakness can also affect muscles that support the spine. “When they’re sitting upright, because their spine and their trunk muscles are weak, gravity can pull their body and their spine in different directions,” Crone explained. That can contribute to scoliosis, a progressive curvature of the spine.
Crone said appropriate support in wheelchairs, car seats and braces can help maintain proper positioning. Without it, spinal curvature can worsen, potentially causing pain, requiring surgery and affecting breathing if the lungs cannot expand properly. “We want the best for these children. We want them to survive and not only survive but thrive,” Crone said. “And so, any way that we can provide that for them, we’re going to ask for more.”
Funding arrangements for medically necessary car seats vary across Canada. British Columbia’s At Home Program can provide specialized seats through its medical benefits for children who cannot use commercial car seats because of a disability. Ontario also has provincial programs to help people with long-term physical disabilities pay for assistive equipment.
Ontario’s Assistive Devices Program generally covers 75 per cent of the approved cost of eligible equipment, though eligibility and coverage depend on the equipment and the individual’s circumstances. Programs across Canada differ in which equipment qualifies and how funding is delivered. Faltysova says those differences highlight what she considers a gap in Alberta. “No family - especially those who have children with disabilities - deserves to go through this,” she said.
Based on reporting by CTV News Calgary.