Province must spend more to show Manitobans with disabilities where the heart is: At home

Most housing available to low-income earners or those with disabilities is located in neighbourhoods that aren't safe.

And it makes no sense. Why put those who can't defend themselves in danger?

In my case, cerebral palsy and using a wheelchair prevent me from defending myself. But while I am limited physically, I am capable mentally: I graduated from Assiniboine Community College in Brandon, Man., and I have written two books.

But when I wanted to continue my education after high school, my mom asked a police officer if he would let his 18-year-old disabled son live in one of the places available to me.

"No, I would not, ma'am," he said.

I have been asking the government to help me live a better quality of life for many years. They have told me "no."

And this does not end with housing options.

How would you feel if you could only live your life for half of the day? Then, for the rest, you were immobilized. This is my reality.

Self-mobilized care

The type of home care I receive is called self-managed care: I am allotted 155 hours of care every two weeks, which averages out to 10½ hours per day. The rest of the day I am on my own.

The government provides me with $3,261.80 biweekly to pay my staff.

But I wish the words "self-managed care" were used in a different context — especially the word "self."

My workers never stay for long. Just as I become comfortable with a staff member, a job that has more hours than the one I can offer comes along.- Alex Lytwyn

I do my own hiring, firing, payroll and I control my staff's duties. But when it comes to me, myself, I am often not taken care of.

I see the program as one would see an overly ripe piece of fruit: It holds the potential to be uplifting and fulfilling. But on the other hand, it has the potential to leave a bad taste in your mouth.

Moving forward

So what changes do I want to see?

I'd like nearly double the number of hours of care I have now, or 294 hours every two weeks, which would equal $6,186.90 in staff wages biweekly. With that, I would get 21 hours of staffing every day.

Trying to get the most out of life can be hard at the best of times, never mind if you're disabled and stuck looking out a window for half of every day at 29 years old, like I am.

I feel the provincial government would like to take away the freedom and mobility that I have right now, and give me less.

Increased funding for the number of hours I am allotted would help me secure the best staff members possible, too.

I am grateful for the staff I have now — the job they do for me is personal and not everyone is cut out for it. But my workers never stay long.

Just as I become comfortable with a staff member, and they become comfortable with me, a job that has more hours than the one I can offer comes along. This leaves me stuck and desperate to find replacements.

If I had 24-hour care, I would be able to offer stable hours to applicants.

Bigger not better

"Move to a bigger centre": That's what I've been told by the Home Care Appeal Board of Manitoba when requesting 24-hour care.

My hometown is Winnipegosis, Man. and I have lived in Winnipeg and Brandon. Trust me, bigger is not better.

Home care systems in cities are no better than the ones in the areas outside of them: Minus a handful of staff, people just see you as a case number.

"So, why doesn't your family help you?"

That's another one I hear a lot when I express interest in comprehensive care.

For as long as I can remember I've had an abnormal relationship with my family. In the past I've felt more like their client than their son or brother while they've cared for me.

My family is getting older and it feels awful to know they have to worry about my life.

Why not go into a home?

Another common response: "Well, if you want 24-hour care, why not go into a home?"

While I have nothing against a home, it doesn't feel like the right fit for me.

They are great for those who are too old to take care of themselves properly, or for those who don't have the mental capacity to live on their own. They give people safety and a lease on life they need and deserve.

If I were to move into a home, I would have few needs left unmet and my worries would be minimal.

I mean, my meals would be taken care of and I would have no bills. Finding staff would no longer be an issue.

But in order for my life to reach its full potential, I can't live in a home.

How would the people who are living there feel about my presence? To them, I am a young, healthy individual, so why would I be living in a home with senior citizens when there are other options?

My life is such that I don't have to schedule "snack time" or go to bed by 8 p.m.

On top of that, the provincial government would take away most of my monthly income, which works out to $33.90 per day, and that would cover the cost of me living there. Your wallet takes a hit from something like this — especially when you live below the poverty level to begin with.

Home rich, money poor

While it would be cheaper for the government, living in a home would leave me with little money for myself.

The government doesn't consider that you have a life, even if you're disabled. Their solution, which is most easy for them, is to put me, and others like me, into low-income or disabled housing, or personal care homes.

Out of sight and out of mind, right?

Canada prides itself in the standard of living of its citizens. Let's realize that spending more could show someone where the heart is: At home.

Alex Lytwyn, 29, is from Winnipegosis, Man. He has cerebral palsy and uses a wheelchair, but he has not felt limited by his disability. Lytwyn has written two books in the past three years and is a graduate of the business administration program at Assiniboine Community College.