Parents face daunting challenges when raising disabled children.
And those challenges – which can range from 24-hour-a-day care to basic child rearing – can be magnified in a rural setting.
“What keeps people safe is having people around,” said Vickie Cammack, of the Planned Lifetime Advocacy Network in British Columbia. She said families of physically or mentally disabled people want to know how their relatives can connect to the community.
Cammack and Al Etmanski, executive director of PLAN, were in Saskatoon to give a seminar hosted by the Saskatchewan Association for Community Living.
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Cammack and Etmanski are parents of a child with a disability and the authors of Six Steps to a Safe and Secure Future: Creating a Personal Future Plan for People with Disabilities.
Don’t look to government
PLAN advocates that caregivers rely less on government programs and more on traditional ways of working with disabled people.
“It’s a return to rural values,” Etmanski said. “It’s friends and family that keep us safe, and they keep us safer than the most sophisticated program in the world.”
The six steps involve friends and family in planning for people with disabilities.
“You can have the perfect will, you can have the perfect housing situation, but if there aren’t people involved in the relative’s life, the plan is going to fall apart,” said Cammack.
Things to consider
Other steps include estate planning; housing choices; choice of guardianship and who will assist relatives in decision making; clarifying a vision for what families want; and finding a group that will offer common sense support.
“Parents know their son or daughter so well that they know when something’s wrong,” Etmanski said. “They know when they’ve been mistreated, they know when they’re unhappy, they know when they’re being ignored.”
Etmanski stressed the importance of bringing the family together to talk about what will happen once the parents are gone, and what kind of life they want for their child. The challenge is to find a group willing to be eyes, ears, arms and legs when the parent is no longer there.
“The second thing would be to get a will,” he said, “because if you don’t have a will, government has written it for you. The imperfect will is better than no will.”
