Support group serves parents with disabled children

Parents with handicapped children are drawing strength from one another in a local support group as they try to ensure their children get everything necessary to start them toward a good quality of life.

George Hatchell and Patty Hlavac formed the Innovative Services Parent Information network (ISPIN) in October.

"We organized this group because there's a lack of correct information to parents concerning their rights to services under the Individual Disabilities Education Act (of 1975)," Hatchell said.

"We structured ourselves with the belief a small group of citizens can have an impact on the community.

We feel we're helping change the mindset in education so everyone believes that children with disabilities can have a good quality of life and be productive citizens despite not meeting what we consider the normal expectations of society."

The group has parents whose children have a variety of afflictions that include autism, Down's syndrome, cerebral palsy, seizures and rare disorders not included within those categories.

Hatchell is the Arizona Early Intervention Program service coordinator and works through a contract with Arizona's Children Association.

He estimates there are more than 300 children with disabilities in the Kingman area.

His 14-year-old stepson, Christopher Adams, has Sturge Weber syndrome, which causes migraine headaches and seizures.

Steadman's Medical dictionary defines Sturge Weber syndrome as a congenital syndrome characterized by a port-wine stain nevus in the distribution of the trigeminal nerve, homolateral meningeal angioma with intracranial calcification and neurologic signs, and angioma of the choroids, often with secondary glaucoma.

Christopher receives service coordination and review of his records every six months by the Department of Economic Security's Developmental Disabilities Division.

His neurology needs are handled in Flagstaff through Children's Rehabilitative Services, Hatchell said.

He received occupational and physical therapy for 10 years, but no longer receives those services as he has sufficient motor skills, Hatchell said.

Christopher now is a pupil at the Kingman Academy of Learning.

"The academy better addresses the needs of children than the unified district," Hatchell said.

"They try to collaborate with parents on the educational form that will best help the child develop his or her strengths.

"I've found the (Kingman Unified School District) to be largely uncooperative with parents in addressing individual needs of children.

They're set in age-old programs and are not open to new innovative thinking."

KUSD programs are designed to serve special needs children with specific problems, Hatchell said.

If the child fits into a particular "box," the services are fine, otherwise the child is "cubbyholed" into another area.

Hatchell said Julie Beyer, preschool teacher at Manzanita Elementary, is an exception in the KUSD.

Preschool children in her program do very well.

"If parents got half the cooperation from the rest of the district they get from Julie Beyer, we wouldn't have half the education issues we face," Hatchell said.

Barbara Fuller, director of exceptional student services in KUSD, said her district works extensively with developmentally delayed children and provides occupational, physical and speech therapy for them.

"We have a teacher for developmentally delayed students and several programs for them," Fuller said.

"We work with children to the transition at age 14 when we begin helping them with what they'll do in life after school.

At 16, we work with them on work experiences both on and off campus."

Fuller said she does not know how to respond to the "cubbyhole" comment of Hatchell.

"We develop programs for our students," Fuller said.

"We reconfigure every time we have a different student population and students appear with different needs."

Trish Cobb and Cyndi Bosze are other parents who attended Tuesday night's ISPIN meeting.

Cobb has two sons afflicted with autism since age 2.

Cosena Barnett, 11, and Kerry Barnett, 9, both attend Kingman Academy of Learning.

Both also receive respite care and rehabilitation thorough the DDD.

"They were in KUSD," Cobb said.

"But I was not satisfied with their delivery of services.

"My problem with the unified district is that they are reactive rather than proactive.

I already had two other children in the charter school, so it was easier to place my disabled boys there where everyone is on the same schedule and they are making more progress."

Bosze's 6-year-old son, David, has mild mental retardation.

He receives OT, PT and speech therapy through the DDD and attends Hualapai Elementary School, which is in the KUSD.

"David is in an integrated class at Hualapai and has a strong relationship with his teacher (Yvonne Kilby).

I'm happy as heck with what he's getting there."