Thousands of families left out of state funding to help with developmental disabilities

The Seattle TimesFebruary 22, 2014 

Amy Crawley, of Kirkland, holds son Rowan, 8, when he becomes too rowdy while playing. Rowan has severe autism, requiring almost constant care. The family has been on a waiting list for almost seven years to receive state services.

BETTINA HANSEN — The Seattle Times

The evaluator came on a cloudy afternoon last April, bringing a state-issued laptop and another chance at a long-held dream.

She sat with Amy and Tony Crawley in the living room of their Kirkland home as they pleaded for help with their son, Rowan, then 7 and struggling with severe autism.

She listened to their story about how a recent trip to a nearby pharmacy ended with Rowan clearing a shelf of supplements and scratching Amy’s arm so hard it bled.

She watched the boy cling to his mother, unable to talk or make eye contact, a wash cloth dangling from his mouth for him to chew to calm his anxiety.

She typed their wishes into the laptop — access to a behavior program, help paying for needed therapies, an occasional visit from a trained caregiver to give them a break.

Six weeks later, the results of the update evaluation arrived by mail: Rowan still met the state’s criteria for receiving services.

But still, the letter reported, “there is no funding available.”

Perhaps no phrase better summarizes the system for residents with developmental disabilities in Washington state, where some 14,600 families determined eligible for services don’t receive any.

It is not a waitlist, per se, because that term implies a linear path toward an end.

Advocates say the only way off the “No Paid Services Caseload,” as it is called, is experiencing a crisis and catching an evaluator’s attention just as a spot opens.

“It’s essentially a lottery,” said Ed Holen, executive director of the Developmental Disabilities Council, an advisory organization whose members are appointed by the governor. “There’s no difference between those receiving services and those not receiving services, except that one group has managed to get the services.”


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