Desperate families of kids with complex needs consider surrendering their children to the province

Three-year-old Tomas Cramer is a beautiful boy.

Blond curls frame his face. His blue eyes draw your attention immediately. But those eyes don't see the world around him.

Born with a rare genetic mutation called GRIN1, Tomas can't walk or crawl or speak. He suffers through dozens of seizures every day. He has to be fed special formula through a tube inserted into his stomach by mom Klara Cramer several times a day. 

"He needs to be carried like a newborn," she explained. "Unfortunately, he's almost 30 pounds, so this newborn is getting pretty heavy."

Despite his challenges, Tomas can still hear and appreciate music.

"He's in love with The Phantom of the Opera," she said. "Who knew?"

Life is challenging at the best of times for Klara and her husband Jason Cramer. But the COVID-19 pandemic made it a lot tougher. It has left the Cramers and other families like them isolated and desperate for financial support and vital services from B.C.'s Ministry of Children and Family Development.

Without adequate support, the burden falls on parents like Klara.

"My husband has to go to work, because someone has to pay for the roof over our head," she said. "I have no choice."

Tomas is part of the ministry's At Home program, which is intended to provide respite and medical support for children and youth with severe disabilities and complex health needs.

But COVID-19's physical distancing and reduced services has meant that medical appointments were postponed or cancelled and all of their therapy sessions disappeared, leaving Klara to manage as well as she could. And the 13 hours a month of respite she relied on has also disappeared, so there is no opportunity to rest and recharge.

Caregiver burnout is real. And it can lead to despair.

"I am emotionally exploited for taking care of my medically complex child," Cramer said. "It's only my inner guilt at being a parent that stops me from saying I'm done. Here is my child. I'm surrendering him to the state and I'm walking away because I'm done."

She isn't alone.

According to Angela Clancy, executive director of the Family Support Institute of B.C., parents at their breaking point are considering making the same decision.

"One of the most traumatizing things a family could ever go through is to be pushed to the edge where, because of lack of services and support, they need to surrender their child to the care of the ministry.

"And when that happens, all services and support, including financial resources, are given to someone else to do exactly what you could and should be doing as a parent," Clancy said.

"It's an archaic system. It's an unacceptable system, and families are facing this all the time in British Columbia."

Katrine Conroy, B.C.'s minister of children and family development, acknowledges that COVID-19 has shed light on a system that needs an overhaul.

"The problem with the supports to children and youth with special needs is that the framework is not working," Conroy said. "I've made it my goal to look at this whole framework. We have to change the way we provide services."

"It shouldn't depend on a child's diagnosis. It should depend on a child's needs. We have to do that as a ministry," she said. "We have to make sure we have supports in place. But we need to do it properly."

On June 22, the ministry announced a final round of the short-term Emergency Relief Support Fund to assist children and youth with special needs and their families to access critical support. A direct payment of $225 per month ending Sept. 30 will assist eligible families.

In the meantime, Klara Cramer goes on, taking joy from little things — her Pitt Meadows neighbourhood, her newly organized office and sewing room, bike rides — and unexpected victories.

"Every day with 10 less seizures is a victory. Every day I get another two seconds of eye contact is a victory," she said. 

"We have lost so much. We have to treasure what we have."

Listen to the segment on CBC's The Early Edition: