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Today's Hope nonprofit looks to raise autism awareness
Deanna Neher is looking for a few good hosts.
The Kenmore resident is a board member for Today’s Hope, a non-profit working to provide autistic children with funding for early intervention services.
The help isn’t cheap. Some forms of therapy cost over $150 an hour, and insurance rarely covers the expense.
Yet researchers say intervention is vital during the first years of development — especially in the pre-kindergarten years, when autistic children aren’t already receiving help from their local school districts.
It can mean the difference between a life of institutionalization and independence.
Today’s Hope helps individuals raise money for early intervention by hosting social gatherings.
Six events have already taken place as part of the group’s “Host for the Hope” campaign, and between five and 10 more are in the works for later this year.
“The goal is to talk about the need that is out there, raise awareness and start the fund-raising process,” Neher said.
Just what the parties entail is up to their organizers.
Louise Rasmussen of Redmond hosted a concert in her back yard.
A woman from North Bend planned a spaghetti dinner.
Neher’s husband held a charity poker night in his basement.
The hosting program has brought in around $12,000 to date, although that isn’t even half of what Today’s Hope is looking for.
The group plans to provide each sponsored child with $36,000 over a three-year period, and is surveying potential recipients online (www.todayshopeautism.org) to gather data about the existing need.
But there isn’t enough money to go around for even one candidate yet.
“It’s been heart wrenching to hear the stories of some of these families without being able to help them out,” Neher said.
It’s distressing because of her own familiarity with the ordeal.
Neher’s son, Spencer, has autistic spectrum disorder. The condition allows him to function at a high level physically and intellectually, but not socially.
He’s shy, struggles with human interaction and tends to play by himself.
Neher first noticed signs of autism with Spencer when he was 3 years old. It took her two years to convince pediatricians that something was wrong based on her concerns and research.
“I had to be the advocate for him because no one else was at the time,” she said.
Spencer now receives a form of treatment known as applied behavioral analysis, which teaches him to communicate with his peers in a traditional manner.
“It helps them engage again with the family unit,” Neher said. “It pulls them out of that world of their own that they tend to fall into.”
The costs of such treatment, however, can be as much as much as a large mortgage payment.
“I pay $1,200 a month for services, and that’s on the light end,” Neher said. “I know some parents who pay two-to-three thousand a month.
“For me, the diagnosis wasn’t so much the slap in the face, because I’d suspected that something was wrong for a long time. It was learning about the costs and wondering how on earth we would pay for it.”
Neher’s family has made ends meet, but not without a certain amount of discomfort. Their insurance policy doesn’t cover Spencer’s treatment.
“We’ve adjusted and budgeted and made sacrifices,” she said. “We know this is what we have to do. This is our priority right now.”
Autistic children who come from less-fortunate families get stuck waiting until grade school to receive help through public education.
“It’s like withholding medicine from a child who has cancer,” said Today’s Hope Executive Director Graydon Agar. “We would never do that in this country.”
Today’s Hope intends to make sure autistic kids aren’t waiting for care, either.
The group plans to hold a second hosting campaign in April 2009.