Stephen Hill was born with spina bifida and has lived his entire life with a disability. Today, the 69-year-old struggles with numerous health complications, including a spinal leak and persistent urinary tract infections due to insufficient catheters. “I have no coverage at all for catheters, so this is an ongoing issue,” he shares.
When Stephen tried to get on ODSP, he was declined. “I had some money saved and a car, so I would have had to get rid of it all,” says Stephen, “I didn’t want to do that. I was honest in my application, and the savings I had were for emergencies.” He further shares that due to his disability, he worked various low-paying jobs his entire life. Although he didn’t meet the financial criteria for support, the coverage for urinary supplies would have been beneficial when he started catheterization later in life. “I did everything on my own. I got my own handrail and anything else I needed with regard to my disability. I am able to walk and never required a wheelchair, but I still needed support and couldn’t access it,” he shares.
Today, on top of dealing with a spinal leak that an Ottawa-based neurosurgeon is assessing, Stephen is also dealing with a UTI, causing additional pain, discomfort and anxiety. His remaining catheters are limited, and the frequency of his infections is increasing.
Under the current funding model with the Assistive Devices Program (ADP), catheters are not covered. As a result, many Ontarians with disabilities either pay out of pocket to be able to urinate or re-use old catheters and suffer from chronic bladder complications. “I’d be more than happy to show our politicians how we catheterize, three-four times a day at minimum. We often can’t go anywhere because we don’t have supplies and need to make sure there is someplace we can do this even in public.”
Stephen has expressed his concerns about catheter coverage to his local Member of Provincial Parliament, but so far, it has proven to be unfruitful.
“This issue lands people in the hospital, and it doesn’t make sense. If we had clean catheters, we wouldn’t need all these extra medications and hospitalizations that ultimately end up costing the government more.” He further shares, “I almost died from re-using catheters. I was boiling catheters that had rubber on them, and I was poisoning myself. I became so ill that it eventually led to my marriage falling apart.”
Currently, there are thousands of Ontarians with disabilities struggling with similar issues as Stephen from a lack of catheters and related urinary supplies. The physical, financial, social and mental implications are dire and, indeed, a matter of life and death.
“Catheters have to be included on ADP,” pleads Stephen. “There are too many people in the hospital dying from kidney failure. If you go to the root cause, it’s dirty catheters much of the time. How much simpler can we put it? We need clean catheters, and they need to be free. People can’t afford these things. We never asked to be disabled.”
Stephen is down to his last few catheters and has shared that if it wasn’t for SCIO’s partial grant to cover his latest batch, he is not sure whether he would still be alive today. How he will get his next set remains to be seen. “I’m on pins and needles right now. My anxiety is over the roof,” says Stephen.
