Planning for the Future: Building Networks for a ‘Good Life,’ Even After the Caregiver Is Gone

Opinionator | New York Times
June 26, 2013
By DAVID BORNSTEIN

As a young boy, Josh had frequent uncontrollable seizures. Life grew increasingly stressful, Kuntz recalled, and the family became isolated. “We were in crisis,” he said. “My wife quit her job and became a full-time caregiver for Josh. We were holding our breath constantly; people avoided us because we were angry; our family got worn out by the level of despair and pain we were feeling.”

Ted Kuntz, left, and his son, Josh.
Ted Kuntz, left, and his son, Josh.

Kuntz was fortunate, however, because Vancouver is home to one of the world’s most innovative disability support organizations: the Planned Lifetime Advocacy Network (PLAN), which helps people secure futures for family members with disabilities — not by providing them with professional services but by showing them how to build resilient and flexible networks of care: webs of personal relationships that are focused on helping people develop their interests and abilities so they can share and enjoy them with others.

PLAN helped Kuntz prepare a long-term care plan for Josh and build up a network of support, which included other parents of children with disabilities. This is unusual. Families of people with disabilities often “exclude other people because they think it’s a burden,” explained Eddie Bartnik, the mental health commissioner of Western Australia, who has been a longtime champion for a network- and relationship-oriented model of care. “Rather than widen things, they narrow them. This creates a huge vulnerability.”

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