Tuesday, August 09, 2005

Everywhere You Turn

Two messages emerge every time I have the pleasure of chatting with a family member:

Families are absolutely committed to achieving a good life for their relatives with disabilities.

Families consistently face barriers that deter their efforts.

We know the statistics. Nearly 2.4 million Canadian families assist a relative with disabilities with activities of daily living. In fact about 75% of persons who require support get it from a family member.

But the statistics don’t tell the stories. For example:

- The long-term commitment demonstrated by a family that is contemplating a move across the country to assure that a daughter with a disability will have the opportunity to pursue her passions and dreams (and have her family present to assist and support her along the way).

- The depth of dedication demonstrated by a couple that manage a group home for their two children with disabilities, provide weekend respite to make the home work, care for a third child that has been seriously injured recently, hold down full time jobs (and find time to volunteer to assist other families).

- The perseverance of families that are described in a recent article in the Toronto Star: "There are many parents in their 80s who have a reason to live and hang on. They can't die. They are looking after their child."

Nor do the statistics illuminate the obstacles that family members face in assisting their relatives with disabilities. For example:

- The commitment of a senior father who contributes annually more than $15,000 towards his daughter’s medical expenses and support needs. And the frustration with the complexity of the system. He can only claim $5,000 under the medical expense tax credit (in excess of the lessor of $1,813 and 3% of his net income) and he can only claim the disability supports deduction if it supports her employment or education needs. Furthermore, the credit will only reimburse about 20% of the expense and the deduction a bit more, depending on income.

- The desperation of a Tamil family that has been welcomed to Canada, who pays their taxes and contributes to Canadian society but who can’t bring their child with a disability to Canada because of the Immigration Act.

- The irritation of a family member who wants to secure the future for a relative with a disability by rolling over her RRSP but can’t because she is not the parent or grandparent. And the disappointment of a family member that has contributed to a pension all of his life but who has no means of channeling any of those contributions towards his son with a disability.

To families who want to assist a loved one with a disability, obstacles seem to materialize everywhere they turn.

Do you have a story? Post it or comment below.

Do you want to get involved? Sign our petition to support a Disability Savings Plan at http://plan.ca/Default2.htm


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