Parents, MPPs rally for funding for developmentally disabled adults

Families with children with developmental disabilities rallied at Queen's Park. They chanted "What do we want? Funding. When do we want it? Now."

'What will happen to our children when we are gone?'

Families joined together to protest the lack of funding and services for adults that are developmentally disabled. (Lori Deschaine/Facebook)

In 2003 Sharon Gabison was at Queen's Park, calling on the government to provide support for her son and other Canadians with developmental disabilities. Fourteen years later, she said she was sad to find herself in the same place, advocating for the same cause.

The mother shared her story during a rally organized by Windsor West MPP Lisa Gretzky Tuesday morning.

Families and friends of children with developmental disabilities joined Gretzky, Hamilton Mountain MPP Monqiue Taylor, OPSEU President Smokey Thomas, and CUPE Ontario President Fred Hahn outside of Queen's Park to call for change.

Chants of, "What do we want? Funding. When do we want it? Now" rang through there air as parents took to the podium to express concerns that the daily needs of their kids are not being met by the government.

"I really wish we weren't here to have to fight for our children," said Gabison.

Her 20-year-old son Eric Segal currently attends high school in a self contained class and functions at the level of a five-year-old.

He is autistic, has a developmental disability and lives at home. Gabison said it took a crisis point for her son to get the support he needed.

"What will happen to our children when we are gone?" Today she asked,"Who thought I would be here 14 years later saying the same thing?"

14 years to address the gap

Earlier in the day Gretzky, the Ontario NDP Critic for Community and Social Services, held a press conference to highlight the fact the provincial government has had 14 years fix problems with services for kids between age 17 and 18 — so far nothing as been done to address those gaps, she said. 

"Rather than supporting families with developmental services they have chosen a system that engages parents in a constant struggle to obtain and maintain vital funding and services for their children," Gretzky added.

A sign asking why there is a gap in funding for the developmentally disabled. (CBC)

Once someone turns 18 they have to fill out more forms to get funding through Passport, a program provided by the Ministry of Community and Social Services, according to Gretzky.

"During that time of application, parents are left with no funding and no services for their children," she explained.

The process to fill out the application is intrusive and can be upsetting for families, she added, as it asks for intimate and personal details. As well, after the application is complete and they have proven the person still has developmental disabilities, the process still may not be over.

"Once that happens and they're approved for funding, many families sit on the wait list for Passport funding for years, some families are on that wait list indefinitely," Gretzky said.

Windsor West Lisa Gretzky talks to families at a rally demanding funding for adults with developmental disabilities. (CBC)

Due to a lack of support many parents quit their jobs to take care of their children all day, every day, Gretzky said.

There are about 11,000 people waiting on the passport funding list and 14,000 on the supportive housing wait list. She states the only way to move up on the list is to be in crisis, but that is subjective. Older parents are often faced with decided how their children will be taken care of once they die.

"Unfortunately many of these families are forced to put their children in really inappropriate housing, so they'll end up in a nursing home, which is not where they need to be or they'll end up in a hospital or for some of these kids they'll end up in a correctional facility," Gretzky said. "Far too many of them end up where they don't belong."

In a statement to CBC News, the Ministry of Community and Social Services said the government's 2017 budget would, if passed, invest an additional $677 million into the developmental services system over four years. 

The investment would bring annual funding for developmental services to more than $2.3 billion in 2017/18. The new proposed budget investment will provide additional support for 1,000 people through the passport program.

Class-action law suit

There is a class-action law suit in the works through the Toronto firm, Koskie Minsky. Lawyer Jody Brown said if it is certified to represent every family that's been put on a wait list for services since July 1, 2011 for any period of time, then about 14,000 people may be covered by it.

Brown listed a 2014 report by the Auditor General and a 2016 Ombudsman report 'Nowhere to Turn'. Both stated no more wait lists.

"Our proposed class-action law suit hopes to seek some form of justice for these families, because they have been left with nowhere to turn, but to the courts," he said.