State To End Mistaken Funding; Disabled Kids May Lose Day Care

Chris Knauss loves her disabled daughter Daisy so much she is prepared to make a painful decision - she may give the 15-year-old up to foster care.

April Shook says that putting her autistic daughter Becky in foster care may be the only way to keep the 13-year-old in a safe and happy place after school.

They and a third local family, whose 16-year-old son has the mental capacity of a first-grader, were stunned by a letter they received from the state in late February.

The letter informed them that as of July 1, the state no longer will pay the $650 a month after-school care the three children have been getting for several years at Northwest's Child, a unique program in North Seattle for young people with severe developmental disabilities.

If the children were in the foster-care system, the state would still pay for their day-care - it's obliged to provide medical and day-care coverage for foster children. In fact, four of the children at Northwest's Child are funded through the state's foster-care program.

The irony, said advocates for the state's thousands of disabled children, is that those who want to keep their families together may be forced to make the opposite choice to survive financially.

It's a situation that underscores the difficulty the state's largest bureaucracy sometimes has serving taxpayers while also trying to meet the special needs of children when funds are limited.

And it shows that some children simply slip through the cracks.

Tim Brown, director of the Division of Developmental Disabilities in the Department of Social and Health Services, said the state should not have paid the day-care costs for the three families in the first place.

"Someone made a mistake," he said.

He said the funds initially were paid by Children and Family Services, another division within DSHS. But when that office discontinued payment in August 1996, saying it had no money left to provide the service, it was picked up by Developmental Disabilities.

But the disabilities office was never authorized to pay the money, Brown said, and simply doesn't have it.

"We discovered it, and now we're seeking to end it," said Brown. "I can't fund something I don't have money for."

The three families say they don't have the money, either, and don't know what they'll do once their funding ends.

"All we're asking is a day-care service to care for her after school, and this provides a safe healthy environment we can trust," Shook said. "If we don't get the funding, this may break up a happy home."

The letters from DSHS went out to the Knausses, the Shooks and to Tammy and Steve Goodchild, whose 16-year-old son Bryan also has been receiving state-funded after-school care at the nonprofit center in North Seattle.

The families' three teens are among a dozen severely disabled young people who gather at the center after school and on school holidays, their care being paid in a variety of ways.

Several are in foster care so the state has paid - and will continue to pay - for them. The city of Seattle pays for one child; several other families pay out of their own pockets.

Bryan attends special-education classes at Nathan Hale High School. He cannot be left unattended.

Tammy Goodchild said she has been getting the money for Bryan since 1992, and that once it stops, she'll have to quit her $366 a week job to care for Bryan at home.

To save money, the family also plans to move from their rental home in North Seattle to an apartment, Goodchild said. "There is no other option unless I give him to the state, and I couldn't. I love him too much."

But that's exactly the reason the Knausses and Shooks say they may be forced to place their daughters in foster care.

The Shooks' daughter, Becky, is autistic. She attends special-education classes at Meany Middle School and is delivered by bus to Northwest's Child while her parents are at work. Given to severe temper tantrums, she cannot be left alone.

Shook said the state has been paying for the care most of the five years Becky has been at the center.

Daisy Knauss, who attends a special-education class at Shorewood High School in Shoreline, has been at Northwest's Child for four years.

"If I can't have her in day care, I can't have her in my home. She needs 24-hour supervision," said Chris Knauss, who works at a nursing home and adopted Daisy 10 years ago after caring for her as a foster child. Now, she said, she is prepared to place Daisy back in foster care to make sure she gets the services she needs.

Brown of DSHS said the state is not withdrawing all the money for the three families, just day-care funds. Families also receive family support money, which can be used for counseling, therapy and respite care - as well as day care.

But the support money, about $200 a month, doesn't come close to covering day-care costs.

Brown also said the families can apply for Medicaid-funded "personal care" to hire someone to watch their children. But the catch is these funds have to be used in the home; they can't pay costs in a day-care facility.

April Shook said she may apply for personal-care money, but only as a last resort. Her daughter, she believes, belongs at Northwest's Child.

"I cannot trust anyone else. She cannot communicate. She cannot tell us if she hurts," said Shook. "I want some enriching activities for her to get her to improve and grow. If she's at home by herself, she won't have those social activities. If you take that away, how can she get better?"

The tidy blue Northwest's Child house tucked behind Blanchet High School looks like any ordinary home in a typical Seattle neighborhood - until school buses arrive.

Special wheelchair ramps lower some of the children onto the sidewalk as Darcy Hupf, who founded the program, goes out to greet them.

Inside, Becky Shook sits quietly at a table, alphabetizing cards: Aladdin in one pile, Pinocchio in another, Hercules in a third.

Daisy Knauss gently places another card in her hand and encourages her. She beams when Becky places the card on the right stack.

"This is not about the program, but about these families no one hears about, the ones in the shadows," said Hupf, who began Northwest's Child seven years ago and says it's the only one of its kind in the area.

She has room for only 12 children; the waiting list is long. Hupf takes them to Green Lake, to the zoo. They have a paper route.

"One of the things these kids lack is friendship with peers," Hupf said. "Let's not shut the door on the parents when they want to do the job."

Hupf has a severely disabled foster child of her own, 10-year-old Skye, who has been in her home for two years. The state pays Hupf $1,200 a month, as well as covering all of Skye's medical costs and day care.

"The very state that could not afford to help a family with a few hundred dollars in order to keep them safe and living with their families is now paying foster parents thousands . . . and then paying for the same child-care they couldn't afford before," Hupf said in a letter to Brown.

"How many foster parents are trained and able to care for a child with cerebral palsy, in a wheelchair, diapered and tube-fed through her stomach?"

The funding problem was discovered when new regional DSHS developmental-disabilities administrator Mary Beth Poch was hired last year. She said her staff discovered the office was paying for something it had no authority to provide.

"It's the most difficult thing for a family to lose a benefit," she said. "We're trying to help them through a transition period, and come July 1 we expect them to use their family-support money to help offset (the day-care costs).

"The last thing we want is for families not to be together. But we're responsible to all citizens, and we have to follow the regulations. Other families, who have a great deal of need, don't get this benefit."

In the letter that announced termination of the money, the three families were also told the state would dip into the families' support money to repay itself for the day-care mistake.

Brown said the state has since backed off on that, realizing it wasn't fair to penalize the families for the state's error.

The parents have since filed an appeal with the state, challenging the withdrawal of the money and asking for a hearing.

The case has drawn the attention of state Rep. Ed Murray, D-Seattle, who said he will write to Gov. Gary Locke expressing his concern.

"We have children in the state who have exceptional needs who have been caught in a bureaucratic mess, and their ability to remain with their families is at risk because of this," he said. He said he will ask Locke to make sure the children receive the funding they need so their parents aren't forced to remove them from their homes.

But Brown said there simply is no money to pay the day-care costs. "We try to operate in a budget and have a consistent set of rules. Everyone's stretched in this world. People have to make really tough choices."

That may be so, but it still penalizes these three families who counted on the money, said Ed Holen of the Developmental Disabilities Council, an advocacy group for the disabled, pointing out that placing the children in foster care will cost the state much more than the $650 paid to Northwest's Child.

"This is the problem with bureaucracy," he said. "They're turning around trying to solve the problems on the back of families. I hate to see families get into situations where they are so stressed out they have to consider an out-of-home placement for their sons and daughters. I think the priority of the state should be to keep families together."

Seattle Times staff reporter Lily Eng contributed to this report.

Susan Gilmore's phone message number is 206-464-2054. Her e-mail address is: