This Amherstburg man says the in-home care he receives is inadequate — despite his complaints

Untrained staff, unreliable scheduling, physical mishandling resulting in injury, and dangerous cooking practices are some of the allegations that a paraplegic Amherstburg, Ont., man is making about the disability support organization meant to help him.

Zachary Ghazali, who uses a wheelchair, said he is going public with his complaints about Assisted Living Southwestern Ontario (ALSO) because he feels he has no other recourse.

"It's been getting worse over time," Ghazali told CBC Windsor.

"It's been going on for far too long. It's kind of my fault that it went this long... I wanted the courage (to speak out) earlier. But unfortunately, I did not."

Rare degenerative disorder put Ghazali in wheelchair

Ghazali, 33, has a rare inherited disorder known as Friedrich's ataxia. The disease involves progressive degeneration of the nervous system. He lost the ability to walk at the age of 20 and his physical problems increase with each passing year.

Despite such challenges, Ghazali has continued to live on his own. In early 2018, he moved into an apartment building on Front Road South that has been re-developed as supportive housing, with services provided by ALSO — a non-profit organization.

Ghazali's mother, Bernadine Damphouse, said her son needs assistance with all activities of daily living: getting in and out of bed, dressing himself, using the washroom and preparing meals.

"Zachary has lived with a lot of pain for a lot of years," Damphouse said. "But there's always hope. You have to hope."

Unreliable schedule, poor cooking puts health at risk

Unfortunately, Ghazali feels his hope is constantly tested by problems with the frontline ALSO staff assigned to him. He said his support workers are often late — or have even failed to show up — without advance notice.

That's a health risk for Ghazali because his diabetic condition requires him to have regular meal times.

"I take my insulin with every meal," he explained. "I take my insulin depending on what I eat and when I eat... If blood sugar is too low, it's dangerous. If it's too high, it's dangerous."

The meals themselves have been a health risk, Ghazali said. He alleges that on more than one occasion, support workers have served him chicken that was raw or undercooked. He alleges he's also seen unhygienic kitchen practices, such as cross-contamination with raw meat.

Lack of staff training has resulted in injuries, Ghazali alleges

For ALSO's part, the agency declined to be interviewed by CBC Windsor or otherwise address any of Ghazali's allegations.

In an email response, ALSO executive director Leigh Vachon stated that she cannot discuss any client's services due to her organization's duty to protect confidential information.

Ghazali also alleges he's been assigned support workers who are not trained in the lifting and moving of a disabled individual.

According to Ghazali, this lack of skill and experience has resulted in multiple incidents of him suffering falls, as well as injuries to his joints and limbs.

For example, Ghazali said that during one transfer process out of bed, a piece of equipment became jammed under his leg. Despite his attempts to alert the support worker, the physical handling continued. "My leg got caught and popped," Ghazali said. "It was painful... They acted as if I didn't say anything at all."

Ghazali said these issues have been compounded by communication problems. His condition makes his speech laboured and slurred. But he said there are also language barriers with staff members and management continues to ignore those barriers.

"I know that I have a hard time talking, and some people can't understand me," he explained. "But if your job is to understand me, and you can't understand me, you're guessing at everything. That's a big problem, and that's hurt me a lot."

'Nothing has changed'

Ghazali said he has expressed his concerns to ALSO management since he moved into his unit six years ago. CBC News has seen parts of the large volume of email correspondence that Ghazali has had with ALSO about his complaints.

Ghazali's frustration over what he considers a lack of improvement has motivated his latest actions: Posting on Facebook, speaking with media and filing a formal complaint with the office of the Ontario Ombudsman.

"They act like nothing they've done is wrong, they're doing their best and they'll do better. But nothing is done," Ghazali said. "I've said the same things for years and nothing has changed."

As of Wednesday, Ghazali said he has completed and submitted the online forms of the Ontario Ombudsman, and is awaiting a review.

Ghazali is not alone in his situation, says disability advocate

Longtime Windsor disability advocate Peter Best, who co-chairs the city's accessibility advisory committee, said he has a positive view of ALSO as an organization — but Ghazali's situation is sadly a familiar one.

"There is too much need, and there is a real problem with the agencies understanding how to fulfill those needs," Best said. "The people we're talking about — people with severe disabilities, multiple disabilities — They're the most vulnerable people."

Denise Best, a disability advocate who is married to Peter, said she knows disabled people who are dissatisfied with the support services they receive, but they don't complain because they're afraid of losing those services.

"When they speak up, it makes things even more difficult for them," she said. "They need to be able to speak up without fear of having their services withdrawn."

"I understand that the agencies are really spread thin. But some people are not even getting basic care. Like having someone come in to make a meal or help them get ready for bed. They never know when their workers are going to show up."

'I don't want help — I need help'

Ghazali feels that the distinction between need and want, is what those who are able-bodied most misunderstand about those who live with disabilities.

"If you don't like someone for whatever reason, you can just have them not show up," Ghazali said. "If I don't like them for whatever reason — they have to come here anyway. I need their help. I don't want help — I need help."

Asked why he doesn't find a different living arrangement and support services provider, Ghazali said he has made inquiries and doesn't have options. "There's no other place to go to," he said. "They told me I'd be put on a waiting list and I could wait up to 10 years for a spot."

Damphouse said she knows her son's situation is not unique.

"My first hope is to see Zachary taken care of... My hope would be that he can have trained staff that can come and assist him, to enhance his life."