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The Right to Education: Local task force helps guide families with special needs children

November 1, 2016
By Mary Haley - For Mirror Moms , Mirror Moms

Anna Gibboney of Williamsburg turned to the Local Task Force for the Right to Education when she needed help for her son Danny, who has fine motor skill issues due to premature birth.

The task force is a group many parents of special needs children don't know about, said task force organizer Kim Capenos of Tyrone. Capenos is the task force member who helped Gibboney.

Gibboney's son, who now is in sixth grade at the Williamsburg Community School District, has struggled with his ability to write due to issues with his fine motor skills. He is now able to access a tablet or laptop to do written work

requiring him to write more than a sentence.

Thanks to Capenos' discussion with school officials, Gibboney's involvement and working with the Williamsburg district, "Danny is able to type in his own schoolwork," Gibboney said.

She added that the school district is receptive to the task force's proposals.

"The task force input has been welcomed and suggestions from the task force are considered when brought to the school,'' she said. "It creates a direction and things to explore rather than just waiting for things to get worse.''

It's that kind of advocacy role that the task force can play in bringing together parents and school officials to improve the quality of education for special needs students, said Capenos. The task force is made up of parents and parent advocates like Capenos who are not only parents of special needs children but who have also received training in such things as the applicable law. Also in the group are representatives from the school districts, charter schools, vo-tech schools and private schools in the region covered by the Appalachia Intermediate Unit 8.

The task force meets monthly in Ebensburg at the IU 08 regional office. The meeting usually features some kind of presentation on a topic relating to special needs. Educators also try to discuss ways that their districts are encouraging awareness among students of how to promote acceptance of students with mental and physical challenges, Capenos said.

"We give schools the opportunity to tell us if they have anything special going on and this is a time when they can share what they're doing in their districts to help their students understand what it's like for some of these kids,'' she said.

In one district, they have a "buddy system,'' where at lunchtime, they match special needs students with those who don't have challenges.

"They have lunch buddies and also recess buddies, so it gives them a lot more understanding of what our kids deal with, I think,'' she said.

Other innovative programs the districts have shared involve talking with students about why some special needs students might have certain accommodations in class when they're mainstreamed into school, Capenos said. Sometimes autistic children are very sensitive to noise, so they'll wear headphones at times or they can also be sensitive to light, so they'll wear sunglasses inside.

"It's building understanding among all kids as to what specials needs kids are,'' she said. "So they understand why is that student wearing headphones when he's eating lunch.''

Capenos got involved with the task force when the oldest of her own children, who all have special needs, was very young. Her oldest child, Marabeth, is now 20, but she has had several learning issues since shortly after birth. Capenos ended up suing the school district to get Marabeth necessary special needs accommodations, but someone later told her the lawsuit wasn't necessary because she could have found relief through the Local Task Force if she'd known about it.

Since then, Capenos has educated herself and others about how the task force can help parents, students and educators make things better for special needs children.

Capenos, whose other children are Lavender, 13, and Kashmir Paige, 12, said the task force has advocates like her who can help parents in a variety of ways. They can help parents know their rights, navigate their way through the special needs lingo or just answer questions and offer assistance.

"There are a lot of parents who've been down this road,'' Capenos said, "and we can give them tips and say, 'Here's all this incredible information that you don't know. ' ''

Kathy Custren is another parent who became very involved with the Local Task Force.

"Back when my children and I first moved to Altoona, we were a family is crisis,'' she said. "With two young boys with Pervasive Developmental Disorder, (PDD-NOS), they required therapy which we received from Easter Seals at the time and various supports in school. It was through the parents networking the waiting room at Easter Seals that I was informed about the Local Task Force on the Right to Education. Becoming an LTF member was an easy process, and before long with the aid of other parent advocates, it enabled me to become a stronger advocate for my sons in the school setting.''

Custren agreed with Capenos that the task force is instrumental in educating and assisting parents of special needs children. She said it was especially helpful in the days before the rise of social media. The group also allows parents to meet with other parents and leaders in the education arena, she said.

"I always saw it as a meeting of the minds, and encouraged parents and educators to work together,'' she said. "This is especially critical during the transition-age years for students age 12 and over. Once students are in junior and senior high, the school districts work with community coordinators (the Transition Council), to engage students with special needs toward identifying the types of support they might need in the workplace or for continuing education post-graduation.''

Unfortunately, as social media has grown, Custren said she has noted a decline in attendance and also parental involvement at the Local Task Force meetings.

"In the past, the LTF was 'the' place to go for answers and support,'' she said. "With the rise of social media and Internet access (and) information, this is no longer the case. Often, parents let things slide until there is a major problem with their child.''



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