Have you read the book Catch 22? In it the main character is trying to prove he is crazy so he can get discharged from the army. The catch 22 being, you have to be crazy to go to war.
Well, dealing with government agencies to get help for the mentally ill can be like going to war and can make you “crazy”. It’s like the system is punishing the client for being ill and the caregiver for trying to help.
In February 2008, my son was diagnosed with Early Psychosis. With the help of the Douglas Institute in Montreal and Doctor Levy, he was accurately diagnosed, put on the correct medication and returned to work. Unfortunately, because of his illness, he was getting fewer assignments, and forgetting assignments and as a result, making less money. He couldn’t afford his medication. Living with paranoid schizophrenia, he wouldn’t accept help from government agencies. His stressed-out partner left him.
I became his caregiver.
I cannot say enough good things about the Canadian Mental Health Association’s Kawartha Lakes Branch. They helped transistion his records from Quebec to Ontario, got him a support team, and thanks to their efforts we got help for this severe, life-altering illlness.
Later, he was one of the twenty per cent of mental health clients living with schizophrenia lucky enough to get a job. It was not in his profession; it was minimum wage and seasonal, but it was a job. His understanding employer didn’t put any stress on him and was fair and accommodating. But, because he was working, he lost his Trillium drug support. Support that he only got when he was unemployed in the winter and on Ontario Works. He earned about $1200 a month working. $800 of that went to his drugs, so even though he was working, he was actually worse off financially. On Ontario Works he received $585 a month.
We say that we want to help people help themselves. How can a mentally ill person become independent on $400 a month? It explains why many don’t take their medication – they can’t afford to. It seems that as caregivers we are constantly filling out paperwork – trying, without power of attorney, to get help with funding for drugs and housing. I tried to find the cost of a hospital stay in a mental health ward – I read anywhere from $1200 to $2000 a day. Things are improving, but we have a way to go yet.
Service Ontario needs to be a seamless support system. Medication for such a severe illness should not be cut off for any reason. Until they can get power of attorney, caregivers should be given the legal ability to deal with Service Ontario in the interim. I don’t know how many times that I was told that only my son could apply for benefits. Because of his illness, he found dealing with government officials and paperwork stressful and he had extreme difficulty remembering conversations that he had had with officials. He wouldn’t give me power of attorney (he was ill).
When I asked my local politician for help getting funding for medication, I was told, “Talk to Service Ontario.” And so we find ourselves in a Catch 22.
Editor’s note: For anyone who may be familiar with a different healthcare system, in Ontario, prescription drugs are generally not covered by OHIP (government-funded healthcare). Many people have jobs with insurance benefits that cover these costs, but some do not. Children are usually only covered under a parent’s plan until a certain age (usually in their 20s). Some services and treatments are covered by OHIP, though often have very long waiting lists. We encourage you to look into options and what might be covered where you live.
About Bonita O'Neill
Bonnie O'Neill is a 67-year-old retired elementary school teacher from Ontario. At the age of 60, she began a seven-year journey - caring for her 26-year-old son who had just been diagnosed with paranoid schizophrenia. This blog documents that journey. She loves to knit and finds that living with someone with schizophrenia is a lot like knitting. Sometimes your work is wonderful, sometimes it unravels, sometimes it gets tangled and sometimes you just want to chuck it.