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Articles

Living with disability

By Michelle Friesen, The Windsor Star Sat, Mar 30th, 2013

Living with disability

Source: http://blogs.windsorstar.com/2013/03/27/guest-column-living-with-disability/

Maurice Chauvin, left, and his son, Joe Chauvin, 17, are pictured at their home in Stoney Point, Monday, March 14, 2013. Joe Chauvin, who suffers from cerebral palsy, will have his funding cut when he turns 18. The funding provides Chauvin with a support worker 2 times a week. (DAX MELMER/The Windsor Star)Maurice Chauvin, left, and his son, Joe Chauvin, 17, are pictured at their home in Stoney Point, Monday, March 14, 2013. Joe Chauvin, who suffers from cerebral palsy, will have his funding cut when he turns 18. The funding provides Chauvin with a support worker 2 times a week. (DAX MELMER/The Windsor Star)

Mar 27, 2013 - 6:14 PM EDT

Kudos to Sharon Hill, whose recent story about the Chauvin family captured the essence of what many of us would like for our sons, daughters, sisters and brothers who are living with disability.

We would like our family members - young and old - to be living an ordinary life. Not a lavish life or even a perfect life, but a meaningful one.

What does a vision like this mean? It means being able to "access" community - to learn, live, play, volunteer and work like most people.

For Joe Chauvin, to participate and contribute, he needs funding to pay a support person to be his eyes, arms and legs - now and into the future.

Ontario wants to lead the way as an accessible province. That intention is clearly articulated on their website, "This is what an accessible Ontario looks like. It's an Ontario where people with disabilities can work, play and learn. It's an Ontario that shows the rest of the world what's possible ..."
Sometimes accessibility is about having someone there to be a "support."
All three political parties could stand together and allocate adequate direct funding to those living at home and also reinstate Special Services at Home funding to those turning 18. It just makes good sense.

Only 9 per cent of the government's Developmental Services budget is used for direct funding supporting 30,000 individuals with disabilities living at home. Another 15,000 children and adults are waiting.

No direct funding has been announced in five years for children with disabilities. Funding for adults with developmental disabilities has not kept pace with the rising numbers out of school. Individuals wanting direct funding as their parents age so they can live in their own homes have no recourse.

This lack of new funding has resulted in inequities. Some have funding, others wait. Funds were available at one point - now they are not. We can't blame individuals with disabilities.

These inequities will not be solved with a tedious, expensive application and assessment process or by cutting off teenagers from their support funding to give it to children.

Babies will continue being born with disabilities. Children will continue receiving new diagnoses. Young adults will continue to leave school without supports and senior "care-giving" parents will continue to age.

The basic amount for the Ontario Disability Support Program is well below the $1,879 figure provided by the Ministry to Ms. Hill. Only with approval of specialized expenses would the basic amount increase. None of that funding would go to pay a worker.

To support someone like Joe, or my daughter Lisa who also has complex medical and physical support needs, in 24- hour residential care, agency representatives put the cost closer to $250,000 per year (versus $100,000 as noted in the article.)

At 32 years old my daughter participates in her community in ways that work for her. She receives funding to pay support workers, has an independent facilitator to assist with planning and counts on family and friends. As we get older it will be the relationships Lisa has and her facilitation support, that ensure support workers assist in ways that make the most sense for her vision and goals. This route was chosen, because it is best for her. Efficient, effective - it works!

There are many individuals with disabilities, like Joe and Lisa, who would like to live in their homes, participating fully, with the support of their family, friends and paid workers. Adequate direct funding is a small price to pay.

Michelle Friesen is a parent and activist for inclusion. She manages Windsor Essex Family Network a family-to-family support group for families who have sons, daughters, sisters and brothers living with disabilities.

thanks to WRFN