Two St. Thomas mothers say ‘everything is a battle’ when dealing with their developmentally disabled adult children

By Jennifer Bieman, St. Thomas Times-Journal

More than 1,400 complaints, 221 interviews and an over three-and-a-half years investigation, a new report by the Ontario Ombudsman is uncovering “extreme and egregious cases” of management failure in the province’s care system for adults with developmental disabilities.

Ontario Ombudsman Paul Dubé didn’t mince any words in a scathing report, released Wednesday, on the sorry state of the provincial system.

In his 182-page tell-all document, Dubé said the Ministry of Community and Social Service’s handling of the adult developmental services portfolio, specifically its responses to crisis situations, has been “unreasonable and wrong.”

Throughout the investigation, which began in November 2012, Dubé’s office heard from struggling families across Ontario and made 60 key recommendations for the ministry.

“During our investigation, we heard from hundreds of beleaguered families at the breaking point … Frequently, their families descend into crisis without stable, dependable, and consistent supports,” he wrote.

St. Thomas residents Susan Buro and Diane White know that first-hand.

The two mothers are unpaid case managers, chauffeurs, full-time healthcare quarterbacks, advocates and appointment secretaries for their developmentally disabled adult children. Buro’s 22-year-old daughter Lexi, who is struggling with deteriorating health, a developmental disability and epilepsy, was one of the many anonymous cases mentioned in the report.

“Everything is a battle, from arranging CCAC, hiring PSWs for nighttime, juggling funding, trying to negotiate with agencies and government on a daily basis. It’s really frustrating and intimidating to be told over and over again, ‘sorry we can’t help you,’” said Buro.

“Years of chaos and ineptitude and panic and frustration have created the worst feeling in the world, and that’s hopelessness.”

Buro is trying to keep up with the ever-increasing care Lexi requires but feels like she’s one crisis away from not being able to meet her needs.

“I’ve spent many sleepless nights terrified about not being able to meet my child’s demands or needs. I feel like I’ve failed her,” said Buro.

Though both are encouraged by the findings and recommendations in the ombudsman’s report, the two mothers’ fear and uncertainty is palpable – they’re both living on the edge. White’s 21-year-old son Aidan, who’s living with down syndrome and autism, has grown more and more unruly as he enters adulthood. His behaviour is deeply troubling, often aggressive and sometimes outright violent. He sleeps two hours at a time through the night and can’t be left alone.

“Aidan is my career … I have continued and haunting fears for his future,” said White.

“Aidan has grown into a really strong-willed, muscular young man with the mind of a two-year-old. He has no understanding of danger, he lashes out in displays of frustration … He holds us prisoner in our own home with his stubborn noncompliance.”

White looked for day programs for Aidan after he finished his schooling in June, but when she came up empty-handed, took matters into her own hands. She rented a space in her church, hiring a care worker and developing her own program to get Aidan out in the community.

Both Buro and White have funding from the ministry but say throwing money at families isn’t going to make the systemic problems go away. The pair want to see more investment in respite care, residential spots, day programs, crisis response and crisis beds for adults with developmental disabilities – and not just a monthly cheque.

“I have funding for Aidan, but there’s nothing to purchase,” said White, who’s had an uphill battle accessing specialized therapy, medical care and other supports for her son.

“I don’t want anymore money thrown at me, because what am I going to do with it?”

The two advocates are very thankful the raw, gritty details of the province’s failings came out in the the ombudsman’s no-holds-barred report. They’re impressed with the depth of analysis, the thorough investigation and the sweeping recommendations made by Dubé’s office.

“It finally felt like our voices were heard. This is not a report, it’s a book with incredible stories and one of those stories is my daughter’s. For the first time in a long time it offers hope,” said Buro, who attended Wednesday’s news conference in Toronto when the document was released.

Even though Buro and White view the report as a victory for the parents of adults with developmental disabilities, they desperately want to see immediate ministry action on the ombudsman’s findings and are waiting to see how the government proceeds.

“There are many awesome recommendations to follow through with but my fear is that it’s going to move way too slowly. Everything is way to slow. We need action today for families,” said Buro.