Over Leilani’s best interest

Michael Miller

Leilani Gutierrez, a 7-year-old quadriplegic girl whose plight

sparked a wellspring of community support three years ago, is in the

middle of a battle with school district officials over which nurses

will care for her as she attends classes.

Gutierrez’s family has requested a hearing with the state

Department of Education, claiming the Newport-Mesa Unified School

District has violated Leilani’s special-education needs.

Leilani, a first-grader at Newport Heights Elementary, has been in

a wheelchair since a car accident in May 2002. Her family’s attorney

filed the request after receiving an April 12 letter from Patrick

Ryan, the district’s director of special education, informing them

that Leilani would be given a district-assigned nurse on campus

rather than the team of providers who have worked with her the last

two years.

On Wednesday, June Gutierrez, Leilani’s mother, took her daughter

out of school. June Gutierrez and the family’s attorney, Kathleen M.

Loyer, said school officials gave them a choice to accept the

services of the district’s nurse or have Leilani escorted off the

campus.

June Gutierrez said her daughter has special relationships with

her three current nurses, who understand her condition through time

and experience.

“I’ve seen my child turn blue, with her eyes rolling to the back

of her head,” June Gutierrez said. “Leilani has a difficult time

communicating when she’s in any respiratory distress. You really have

to know Leilani and know what she’s needing at that time. That’s my

daughter’s life in someone else’s hands.”

Newport-Mesa district officials declined any comment on the issue,

calling it a legal matter. Mark Hargon, office manager for the

Special Education Hearing Office, said on Wednesday that the state

was in the process of assigning a mediator to the case.

Kurt Suhr, the principal of Newport Heights, said the school had

gone out of its way to accommodate Leilani’s condition, even building

a special ramp outside her classroom door.

“We always make provisions for Leilani in the classroom to make

sure she’s getting the services other students are getting,” Suhr

said. “We’re working hard with the family and district and providers

to do what’s best for her.”

According to documents filed Wednesday with the Department of

Education by the Gutierrez family’s attorney, the district says

Leilani needs a new provider on campus because her current team has

caused her to miss school too many times.

So far this year, Leilani has stayed home five days because a

nurse from Maxim Health Care, her current provider, was not

available, according to the legal filing.

On Wednesday, Leilani remained at home with her family while

classes proceeded blocks away.

“I’m happy, very happy, because I get to play video games now,”

Leilani said in the frontyard of her Costa Mesa condominium. “I’m

also sad that I can’t go to school.”

June Gutierrez said that she would pick up her daughter’s homework

assignments from school until Leilani returns.

After the 2002 car accident, which paralyzed Leilani at the age of

4 and left her briefly in a coma, Leilani became an inspirational

figure for many in the Newport-Mesa community. Her family has hosted

walks at Fairview Park in Costa Mesa the last several years. In 2004,

the Redman Power Chair company in Tucson presented Leilani with a

state-of-the-art wheelchair.

In an Individualized Education Program report from August, the

district agreed that Leilani should stay with her Maxim Health Care

nurses but noted that it would consider a change if “excessive

absences” occurred. Loyer and June Gutierrez both acknowledged

Leilani’s absences but said that the district violated protocol by

not consulting the family before making the change.

“Because of circumstances last year of not having enough nursing,

[the district] asked for there to be nurses all the time, so I did

that,” June Gutierrez said. “I complied with what they were asking of

me, with the condition that if there were going to be excessive

absences due to lack of nursing, then we would look into finding

another agency as a team.”

Ryan, in a letter to June Gutierrez last month, informed her that

a district-appointed nurse from Interim Health Care Services would

take over as Leilani’s provider on campus. The change went into

effect on April 18, but Leilani was gone from school that week and

the next -- the first due to illness, the second when her family went

on vacation to Hawaii.

In a more recent letter this month, Ryan acknowledged the mother’s

wishes but said the district had a right to appoint its own provider.

“Although you have been ensured that Interim is a licensed

facility and the District has made efforts to ensure that quality

care is provided to Leilani, you have demanded that the Interim

[nurse] ‘not touch Leilani,’” the letter reads. “Please note, that

the District has a right to contract with Interim to provide services

and the Interim aide will continue to be present at the school.”

Loyer dismissed the notion that having an Interim nurse could

solve Leilani’s attendance problems.

“They can’t issue any more guarantee than Maxim can,” Loyer said.

* MICHAEL MILLER covers education and may be reached at (714)

966-4617 or by e-mail at [email protected].