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

A Family Disability Lens

Experience demonstrates that families have many assets. They are great problem-solvers. They are resourceful and effective. They are dedicated and resilient. They are well recognized as the best place for children to grow and develop within.

Nevertheless, when it comes to raising a child with a disability and securing the future for him or her, families acknowledge that they cannot do it all on their own. Sometimes the care-giving demands are too great. Sometimes there are extra-ordinary expenses.

What families most often want is a partnership. They want assistance, sometimes with care-giving and sometimes with costs. They seldom want government to take over.

Some government policies, however, are structured to create an all or nothing situation. Either the family is 100% responsible. Or government is 100% responsible.

The Hatzisavva family’s story, told by Sylver Mclaren in the Peace Arch News (February 12th) is a good example. The Hatzisavva’s two year old son, Nickolas, was disabled in 1998. His parents brought him home, “but they found the around-the-clock care he needed impossible to maintain using their combined incomes and the $230 a month they got from government. Not able to afford an aide or any type of respite care, they were forced to put Nickolas in foster care.”

Many other families have faced the same situation. Foster families who provide care for children like Nickolas are paid as much as $3,000 per month and are also able to get respite and emergency care.

Clearly, this is not a policy which values families. Policies are often slow to evolve, even as our society changes.

Recently, we have been discussing the idea of a family disability lens. That is, a way of looking at policies to ensure that they value and support families. Here is our first draft:

· First, remove Government barriers that prevent families from being their own problem solvers
· Second, focus on funding that strengthens problem solving, creativity, adaptability and resilience of families
· Third, when funding programs for persons with disabilities, ensure that the programs supplement rather than supplant families.

The policy of supporting foster families but not natural families is a good example of a policy that results in supplanting families from their care-giving role rather than supplementing them because they don’t qualify for the supports that foster families get. To be consistent with our family disability lens, this policy would need to change.

PLAN Blog has been created!

As families, we want our loved ones to a live good life.

After speaking with thousands of families and persons with disabilities, we think that a good life is:
- having a home
- being surrounded by family and friends
- having enough income to live with dignity
- making choices
- pursuing one’s interests and passions
- making a contribution.

PLAN exists to help families like you to assist your relatives with disabilities to live a good life.

Thus this Blog is all about OUR shared work. We want to share what families have taught us over the years and what we think will assist you in your quest for a good life for your relative with a disability.
This includes
- news
- ideas
- information
- materials
- initiatives for public policy reform.

We want you to share what you think about our work; what is working for you and what obstacles you face in securing a good life for your relative with a disability.

We hope you you get involved.