WHEN THE state ruled two years ago, families worried they would have to either give up custody of their children or give up the state money that pays for their care.
April Shook stood in the kitchen of the Northwest's Child day-care center, stroking her daughter Becky's arm and listening to the director's report about the day. It was a good day, the director said. Becky was happy.
In any other kitchen, in any other day-care center, such a scene would be routine. But in this small blue house next to Lake Union, it is extraordinary.
Two years ago, the state told the Shooks it would stop paying the $650 a month for Becky, an autistic 15-year-old girl, to attend this special day-care center for severely developmentally disabled children. The only way Becky Shook could keep receiving the money was if her family were to place her in foster care.
But thanks to a legal challenge, the Shooks and one other family were able to keep both custody of their children and state money to pay for their care at Northwest's Child.
Today, the center will hold a ceremony to honor the lawyers from Carney, Badley, Smith and Stevenson who fully took on the unusual case without pay. Tim Parker, managing partner for Carney Badley, was recently honored by the King County Bar Association as a "quiet hero" for heading up the firm's work on the case.
"I am so relieved," said April Shook. "We didn't want to . . . make a decision we would have regretted later on. She's family, and we didn't want her to have to be part of someone else's family."
Becky, a sunny girl with a messy ponytail who loves to run her fingers over people's watches, has been attending Northwest's Child for nine years.
At 2:30 p.m., a bus brings Becky from West Seattle High School to the center, where teachers immediately set her up with a crayon and piece of paper with "Becky" lightly stenciled on it so she can practice writing her name. Next, she matches words with pictures and puts together a puzzle. Then it's snack time. The 12 students at the center have a paper route and go on outings every day in the summer.
But until recently, it was unclear whether Becky could stay at Northwest's Child.
Two years ago, the state Department of Social and Health Services (DSHS) informed the Shooks and two other families that it would no longer pay for the after-school care at Northwest's Child. The families were told they'd have six months to find alternative arrangements for their severely disabled teenagers, who need constant supervision.
The families never should have received the money in the first place, said Marybeth Poch, regional administrator for DSHS' Division of Developmental Disabilities. "It should have been stopped, but it went on and on. We tried to correct that."
That meant the families would have to pay the tuition themselves, which the Shooks said they couldn't afford. Mark Shook is a cook at a seafood restaurant. April works for an insurance company.
Another option was to apply for Medicaid personal-care funding, which pays up to $600 a month to hire an attendant. But that money can't be used for a community-based program like Northwest's Child. And if they were to accept Medicaid money, the $100 per month they now receive in state family-support money for counseling or a sitter would be reduced.
Or, the families could have given up custody of their children. The state is obliged to pay day-care and medical expenses for children in the state's foster-care program.
The families believed the care from Northwest's Child so important that they were willing to consider giving up their children to keep them there.
A lawyer from Carney, Badley, Smith and Spellman heard about the situation, and the firm took on the case for free.
"It sounded horrible and completely unjustified," said Jim Lobsenz, who represented the families.
An administrative-law judge within DSHS initially ruled against the families.
The families appealed the ruling. In January, an administrative-review judge restored their funding.
For one family, it was too late.
Chris Knauss said they made 17-year-old Daisy Mae a ward of the state at the end of last summer. The trial was just too much stress, Knauss said. She was overwhelmed by caring for her daughter, who functions at the level of a 6- or 7-year-old, has attention-deficit disorder and suffers from compulsive tendencies to eat and steal.
Ironically, Daisy is enjoying a funding windfall in foster care. She goes horseback riding once a week, takes swimming lessons twice a week, joined Special Olympics and has transportation to all those activities - benefits that were difficult for her two full-time working parents to provide. That's in addition to school and day care.
The family visits her once a month.
"When you have your own child, there's very limited funds, but when you place them outside your home, there's almost an endless supply of funding," Knauss said.
Even the state recognizes the bizarre logic. For each child in foster care, the state can pay up to $3,000 a month, Poch said.
Parents should never have to go to such extremes to get adequate funding for their children, Lobsenz said, because the state wants to keep families together and is constitutionally obligated to provide for the developmentally disabled.
But for now, there are still few options for parents of severely disabled teens: Northwest's Child is thought to be the only such facility in the state, and it has a long waiting list.
And Becky isn't going anywhere soon.
Sarah E. Richards can be reached at: 206-464-2567. Her e-mail address is: firstname.lastname@example.org.