Finding Support For Children With Disabilities Parents of children with severe disabilities have many challenges and concerns. One big worry: Who will care for their children after the parents are gone? A Canadian organization creates plans for future care so parents can have peace of mind.
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Finding Support For Children With Disabilities

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Finding Support For Children With Disabilities

Finding Support For Children With Disabilities

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ROBERT SIEGEL, Host:

Well, as part of our occasional series on social entrepreneurs, NPR's Wendy Kaufman has this profile of an organization in Vancouver that's trying to tackle this problem in novel ways.

WENDY KAUFMAN: Al Etmanski is a veteran community activist. And after his daughter Liz was born with Down syndrome, he turned his attention to the needs of those with disabilities and their families. He was feeling pretty good about the work he was doing until he was approached by three men at a Christmas party. All were in their 70s, and all had kids with disabilities.

AL ETMANSKI: And they say, Al, it's great all the work that you're doing, and we're generally very, very pleased with what you're doing for younger parents. But what about us? And I said, well, what do you mean?

KAUFMAN: The men said their adult children were okay for now, but the parents were worried about what would happen to them in the future.

ETMANSKI: And they said we want people who will be our eyes and ears and arms and legs when we're not around. We do all kinds of things that paid staff don't do. And who's going to do that? Who's going to look after our kids when we're no longer around? And that just brought me up short.

KAUFMAN: That conversation - more than 20 years ago - led to the creation of a new nonprofit organization. It's called PLAN. The acronym stands for Planned Lifetime Advocacy Network.

(SOUNDBITE OF PHONE RINGING)

PLAN: Hi, welcome to PLAN. How may I help you?

KAUFMAN: For example, instead of asking families what services does your son or daughter need, PLAN asks what would constitute a good life. The answer, says PLAN President Etmanski, almost always revolves around money and friends.

ETMANSKI: The two biggest handicaps people with disabilities have are, one, social isolation and loneliness; and, two, poverty.

KAUFMAN: PLAN systematically addresses both. It's created networks of support for individuals with disabilities and persuaded the Canadian government to create disability savings plans for individuals like 32-year-old Erin.

PAT TESAN: Daddy will get you a drink. You go (unintelligible).

RICK TESAN: I'll get you some in a minute, baby.

KAUFMAN: Over dinner at their comfortable home, Pat and Rick Tesan talk openly about their hopes and dreams for Erin. The Registered Disability Savings Plan, says Rick Tesan, offers their daughter real financial security.

TESAN: I call it leveling the playing field and giving parents an ability to put money aside for their child with a disability, the same as they would with a child that was going to go to university or something like that. Before, if Erin had any extra money she would lose her disability payments. So this is a way where she will not be living at the poverty line all the time.

KAUFMAN: But money alone isn't enough. Networks of friends are also critical. Erin Tesan's network, for example, meets regularly to discuss outings, transportation needs, shopping trips, even who will spend the night so her parents can get away for a weekend. But Sara Fretheim, a member of Erin's network says it goes well beyond that.

SARA FRETHEIM: We all know what Erin is involved with, what's going on in her life and that we all know one another. And so if we were called upon to make some decisions for Erin, we know who we're coming together with and we know what Erin's hopes and wishes would be, we know what Pat and Rick's hopes and wishes would be.

KAUFMAN: They know what financial plans are in place and how best to implement them. Here's Pat Tesan.

TESAN: Wendy Kaufman, NPR News.

(SOUNDBITE OF MUSIC)

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