How families walk the financial tightrope of caring for children with medical complexity

Amy recites expenses with the precision of an accountant.

There was the HEPA filter to purify the air in her home: $1000. An American Sign Language (ASL) kit: $1500. A plasma car: $80.

These are all necessary to accommodate Amy’s three-year-old son, Wyatt. Wyatt was born with brainstem dysgenesis, a rare condition where blood flow to the baby’s brain is disrupted during pregnancy. Because of his condition, Wyatt has a host of respiratory, nervous and muscular problems that require special accommodation.

The HEPA filter improved the quality of the air he breathes at home. The ASL DVDs helped him to communicate with his family. The plasma car strengthened his core muscles.

“The biggest cost was having to take out all the carpet in our house because of his respiratory issues,” says Amy. Wyatt’s doctor noticed an improvement in Wyatt’s health when the carpets were gone — he had fewer respiratory problems and was hospitalized less often.

The expenses never stop. Private care from nurses while Amy and Andrew are at work, physio appointments, hospital parking fees, respite, time off work for medical appointments — it all adds up, in a big way.

Amy works for the federal government, and Andrew is in the Canadian Armed Forces, good jobs that give them good benefits. Even still, finances are the family’s number one stressor, says Amy. “Andrew and I are so lucky, we have good jobs, and we’re barely scraping by. It scares me to think what are other parents out there doing.”

Amy and Andrew’s experience is sadly typical of families of children with medical complexity. A 2016 study in The Journal of Pediatrics found nearly 70% of families of children with medical complexity reported financial hardship.

This study demonstrates what Melissa D’Amora, a social worker at the Children’s Hospital of Eastern Ontario-Ottawa Children’s Treatment Centre (CHEO-OCTC), sees in her work with the Navigator Program, which helps parents who care for a child with complex medical needs.

“We deal with families that are from low incomes to high incomes. They have all had their finances impacted,” says Melissa.

In fact, the prevailing reason parents reach out to the Navigator Program is for financial information or support. The financial burden of caring for a child with medical complexity is heavy.

“We don’t go on trips. We can’t afford it. We get half of our clothes through other moms,” says Amy. “We’re cutting everywhere. We don’t have cable. We limit ourselves to operating with cash during the week; we don’t use our credit cards.”

The family car breaks down, but they can’t afford to buy a new one. Wyatt and his brother can no longer be in a soccer league because it’s too expensive.

While there is government funding to alleviate some of the financial burden on families, it has its limits. Funding is for narrowly defined expenses — no one pays for carpet to be removed from a home, even if it is medically necessary. The bureaucratic process of applying for funding is a mammoth task in itself.

Understanding Ontario Funding Sources for Families of Medically Fragile and Technology Dependent Children

And as Amy knows, agencies often look at household income without considering factors that influence how far a family’s income has to go. She has MS, which comes with its own health expenses, Wyatt is one of three children. Yet extenuating family circumstances and family size aren’t taken into account when considering whether her family is eligible for financial support.

Families with a household income of $70,000 per year aren’t usually eligible for benefits, which also poses problems.

“A family making over $60,000 or $70,000 is struggling too,” says Melissa. Because of the incredible financial burden of having a child with medical complexity, “they could be living at the poverty line.”

Because of the demands of their child’s condition, more than half of families of children with medical complexity have a parent, usually the mother, leave work. (Sue Robins has written about this for the Huffington Post.) Then they experience a painful irony: their income goes down even as their costs skyrocket.

This was the case for Amy. To care for Wyatt, she took parental leave when he was born, and then unpaid leave when her parental leave was over. Now she works part-time, but it’s not easy.

For Amy, the situation often feels hopeless. “Being able to save isn’t a luxury we have. We both know we’re not doing well and there is no end in sight. We’re trying our best, and our best is not enough.”

Families like Amy and Wyatt’s can take advantage of a Registered Disability Savings Plan (RDSP), a special program to help Canadians with disabilities and their families save for long-term financial needs. But without money to contribute to their RDSP, Amy and Wyatt’s long-term financial future is uncertain.

The uncertainty causes families to worry. They worry about benefits decreasing, support programs being cut, medications for their child being unavailable. There is so much that is out of their control.

Melissa emphasizes how important it is that families get the financial and emotional support they need. “It’s so complicated and no one has all the knowledge when they come into this world [of medical complexity]. Parents need to reach out to other parents or social workers, and not be ashamed of their situation. There are programs for this, we need to make sure people receive the support that’s available.”

Until something changes, Amy will continue to monitor her family’s expenses, cutting costs where she can and making difficult choices between what Wyatt needs and what the family can afford.

Families of children with medical complexity may find it helpful to review these financial tips for caregivers. They can also reach out to a Social Worker at CHEO-OCTC or the Navigator Program at navigator@cheo.on.ca.