The province’s Citizens’ Rep has released the results of an investigation into the challenges faced by parents and caregivers of children with complex medical needs.

Bradley Moss found that the services and programs available operate in silos, and that parents and caregivers are often confused about, or unaware of their eligibility for federal or provincial government assistance.

The report says parents often rely on social media to learn about services and to connect with one another, and there is no discernable central contact point to access support.

As a result, some parents and caregivers experience extreme financial hardship and many assume significant medical care responsibilities for their child.

Moss says the findings demand immediate attention.

“This report is a clarion call to the Government of Newfoundland and Labrador, and the people of our province, to prepare for a time in the near future when these parental and caregiver supports become increasingly unavailable as a generation approaches retirement age,” said Moss. “We have a collective responsibility to work together to make sure family caregivers and their children are supported, to make sure they receive the benefits and services they require in a fair, timely and efficient manner, and have a plan for their future.”

Moss says many caregivers experience a lack of respite hours, and they “toil even harder in crisis situations, such as acute care stays, while the other spouse and children remain at home.

He says there’s also an “impending lack of supportive housing or residential assisted living arrangements” for an entire generation of children “whose parents are aging and will no longer be able to physically take care of them.”

The Citizen’s Rep has made 12 recommendations outlining the need for greater policies surrounding acute care admissions, respite care that is based on the needs of the child and not on family income, and regular updates on upcoming residential support needs for medically complex children and adults.