Saturday, February 26, 2005

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.


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