An Alberta mother is calling on the provincial government to fund medically necessary car seats for children with disabilities, saying families shouldn’t have to rely on charities and community fundraising to get equipment recommended by their health-care providers. Nikol Faltysova says her seven-year-old son Oliver Masnada needs a specialized car seat because he has Duchenne muscular dystrophy, a genetic condition that progressively weakens the muscles. The Canmore family has now secured enough money for the roughly $4,200 seat, but Faltysova says it took two years of 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.” Unanswered calls Faltysova says the family first raised the need for a specialized car seat with the children’s hospital about two years ago. She contacted Alberta Aids to Daily Living (AADL), her private insurer and Family Support for Children with Disabilities, but says she was unable to get funding through those avenues. On Tuesday, AADL representatives contacted Faltysova and told her medically necessary car seats are outside the program’s scope. According to Faltysova, she was told AADL is focused on equipment that supports a broad range of Albertans, and that specialized car seats are considered a form of transportation adaptation, which is also outside the program’s scope. She says the representative was unable to tell her which provincial program would be responsible for covering the equipment. In a statement to CTV News, 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 their 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. The ministry said it could not comment on the specifics of Faltysova’s case, but said it is “actively reviewing the program to better support the needs of Alberta patients and families.” Faltysova says AADL did suggest she contact Variety, a charity that can provide donated equipment to families. She says she had already contacted Variety, but was told specialized medical car seats are rarely available because there are relatively few on the market and they have expiry dates, making them difficult to pass on to another family. Faltysova also contacted charities, including Easter Seals and Inclusion Alberta, but says both applications were not accepted. “When our equipment loan program was operating, our requests did exceed what the community donations could support,” said Katherine Such, CEO of Easter Seals Alberta “Those families were waiting significantly longer times. The challenge we saw were that as the children’s equipment need changed, the family was still trying to afford the last equipment or the last piece of equipment they needed.” Faltysova says the experience shows why more government support is needed. “And why do you think these charities aren’t accepting any more applications? It’s because basic equipment like this is not covered.” Faltysova says she then began contacting the office of Alberta’s Minister of Primary and Preventative Care, Justin Wright. “I have sent multiple emails, left voicemails, and nothing.” The family eventually applied to the Muscular Dystrophy Canada and received funding for the seat. Destroy Duchenne also contributed $500, while a community bottle drive raised another $1,000. The fundraising eventually helped bring the family’s remaining contribution to roughly $600. Faltysova says she’s grateful for the organizations and people who helped her family, but says charities are already overwhelmed by families seeking medically necessary equipment. She wants the province to work with those organizations to identify what equipment families need most and find ways to take some of the financial pressure off 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.” She says her goal is to make the process easier for other families who may face similar needs. Why Oliver needs the specialized seat Oliver has outgrown conventional car seats and cannot safely transition to a standard booster, according to his mother. His physiotherapist and occupational therapist recommended the specialized seat after it was trialled with him. Faltysova says Oliver spends about six hours a week in a vehicle travelling to school, medical appointments and adaptive activities, including volt hockey and skiing. Because Duchenne progressively weakens the muscles, she says Oliver needs proper support whenever he is seated for extended periods. Dr. Megan Crone, a pediatric neuromuscular specialist at Alberta Children’s Hospital, says Duchenne muscular dystrophy is an inherited condition in which muscles progressively break down and are replaced by fatty tissue. As the muscles become weaker, children with Duchenne gradually lose strength and mobility. Crone says boys with the condition commonly lose the ability to walk during their teenage years and eventually require wheelchairs. The weakness can also affect the muscles supporting 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, or a progressive curvature of the spine. Crone says 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.” Different approaches across Canada Medically necessary car seats are funded in different ways across Canada. In British Columbia, the provincial At Home Program’s medical benefits can provide specialized car seats for children who cannot use commercial car seats because of a disability. Ontario also has provincial programs that help people with long-term physical disabilities pay for assistive equipment. Its Assistive Devices Program generally covers 75 per cent of the approved cost of eligible equipment, although eligibility and coverage vary depending on the equipment and the individual’s circumstances. The programs across Canada differ in what equipment is eligible and how funding is delivered, but Faltysova says the contrast highlights what she sees as a gap in Alberta. “No family – especially those who have children with disabilities – deserves to go through this,” she said.
