Special-needs student left on his own

Published 9:43 pm Thursday, April 2, 2009

GRANITE FALLS — John Haskett sat in his wheelchair outside the Granite Falls School District headquarters on a sunny March day. A picket sign propped in his lap read “Make an example for other school districts to follow.”

It was 2:30 p.m. on a Friday and the 16-year-old Granite Falls High School sophomore should have been in class.

But John didn’t feel well and was too uneasy to go. Two weeks earlier, school officials had reassigned the aide who helped him eat, take care of personal hygiene and write assignments, said John and his mom, Marie Haskett.

John has Duchenne muscular dystrophy, a progressive disease that gradually weakens muscles, including the heart. John carries a special oxygen supply with him on his wheelchair to help him breathe and sometimes needs someone to suction his mouth to prevent aspiration, a potentially life-threatening condition.

School officials would not discuss John’s situation or what happened to the aide, citing federal laws protecting student privacy and health care.

Marie Haskett believes that John’s aide was reassigned to avoid the expense of hiring someone else to help care for a younger student.

With school districts laying off teachers and slashing programs to balance their budgets, Haskett and other advocates fear schools across the country may cut special education services to save money.

“We always say special education is only as good as general education; when funds are low for general education, it affects special education, too,” said Barbara O’Kelly, co-founder and president of the Marysville Special Education PTSA. “What we say in our district is the only time they talk about special education is when there’s budget cuts.”

State and federal laws mandate that schools provide the services needed to educate children with disabilities.

It costs around twice as much to teach a child in special education programs compared to a child without disabilities.

In Washington, about 130,000 of the 1,031,846 students in public schools receive special education services. These students have a variety of conditions, including developmental, physical and behavioral disabilities. Some primarily need help taking tests and completing work, while others can’t talk or require assistance with other basic needs, including using the bathroom and eating.

The state spends an extra $4,800 to educate each special education student. That should add up to around $611 million this year, said Jennifer Priddy, the assistant superintendent for finance of the Office of Superintendent of Public Instruction. Last year, the state spent an additional $38.3 million in “safety-net” funding for the most severely disabled students.

Schools also receive money from the federal government to help with special education.

When Congress passed the Individuals with Disabilities Education Act in 1975 and completely revamped special education in the U.S., it vowed to pay up to 40 percent of the extra costs associated with educating disabled students.

“It’s one of those unfunded mandates and promises the federal government has never followed through with,” said Linda Sax, director of elementary special education for the Marysville School District. “The stimulus program will make up for some of that difference, but we think it will probably be targeted toward activities that are sort of beyond our day-to-day needs.”

While the federal government’s contribution to funding special education has risen in the last decade, it still only pays for roughly 15 percent to 20 percent of the cost, said Jay Chambers, a senior research fellow at the American Institutes for Research who has studied education funding for 35 years.

It’s not enough.

Most schools in Washington end up paying some special education costs on their own.

“The state doesn’t fully fund basic education — it certainly doesn’t fully fund special education either,” said Kathy Grant, spokeswoman for the Granite Falls School District.

Last year Granite Falls spent around $144,000 of local levy money paying for special education. And while the district hasn’t cut special education funding in years and doesn’t plan to this year, a big budget deficit makes it tough, Grant said.

As part of a bigger budget reduction last year, the Edmonds School District cut $850,000 in special education funding. Because the number of special education students in the district had dropped, some of the cuts were to services that weren’t needed anymore, but others have been missed this year, said Katy Wysocki, director of student services for the Edmonds School District.

“When the money you get from state and federal government doesn’t keep up with costs … we have to cut,” she said. “We’ve just had to do with less. We cut some specialists that we really liked having, like behavior specialists, things that were really good and important to our programs. We just had to make reductions.”

The district also cut teachers assistants and aides who help students such as John Haskett function in class.

In Washington schools, there are nearly 10 special education students for every special education teacher or aide, according to federal data collected by the Data Accountability Center. While not every special education student needs an aide, the ratio puts Washington among the 10 states with the worst ratios of special education teachers and aides to students.

In Granite Falls, there are enough special education aides to handle the current needs of the district, said Carol Panagos, the district’s director of special programs.

That doesn’t make sense to Marie Haskett and her son. They don’t understand why, if money isn’t an issue, the district would give John an aide, then take her away as his health worsened.

“I think it’s just kind of stupid,” John said, as he picketed outside of his school. “I think they shouldn’t make budget cuts to school. I think it should be to something else.”

Marie Haskett has launched a campaign to return John’s aide. She’s attended school board meetings, called more than a dozen organizations and researched special education law.

Because John’s condition is progressive, he will likely grow weaker each year.

“Almost every child with Duchenne muscular dystrophy when they’re in high school has a full-time aide,” said Jennifer Martin, a health care services coordinator with the Muscular Dystrophy Association in Everett. “Once a child gets a ventilator put on their chair, it’s a huge medical safety risk not to have a full-time aide with them.”

Though John knows he can ask teachers or classmates for help, his mom says he’s often hesitant to speak up. Haskett is afraid that without an aide who knows her son and his medical history, he won’t finish high school.

She hopes legislators and school board members keep students such as John in mind as they slice away programs and staff to save money. So does John.

“I think they need to be nice and give her back,” he said.

Kaitlin Manry: 425-339-3292, kmanry@heraldnet.com.