Child Development

Learning to Advocate: Parents of disabled students need know-how and support

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Fourteen-year-old Walter Polak is an honor student who passed two high school Regents exams while he was still in middle school. The Syracuse high school freshman is already making college plans, hoping to study foreign languages. He has taught himself Spanish and is now studying Mandarin.

To get to this point, Walter needed special education. He was diagnosed with autism at 28 months and began receiving education support services before he turned 3.

“We started the process at 18 months,” his mother Jennifer Polak said. “We were concerned because he gained language and then lost it a number of times.”

She first made an appointment with the family’s primary care physician, who referred the Polaks to a developmental pediatrician. “He had the speech evaluation, he had a psychological and emotional evaluation, occupational therapy, physical therapy,” Polak said.

The results of those assessments qualified Walter for early intervention services, both at Syracuse’s Dr. King Elementary School and through in-home visits from an occupational therapist and a consultant teacher. When he was ready for preschool, friends and family with special education experience suggested Jowonio School, an inclusive preschool where children with special needs learn in classrooms along with typical children.

Jennifer learned all she could about autism on her own, reading books she took out from the Onondaga County Public Library. It was through Jowonio that she found out about workshops and seminars designed to help parents like herself. “A lot of them were events within the community that were free or at low cost, where you could go and learn about how to become a parent advocate.”

Through those programs, the Polaks learned to tackle what can be an intense, exhausting, often frustrating process of researching, attending meetings, understanding students’ legal rights, and filling out mountains of forms.

“Nobody ever comes to this office happy,” said Amy Evans, Syracuse City School District’s director of special education. “As a parent, when you come here, you always have a concern.”

Evans has an open-door, no-appointment-needed policy. Parents are welcome to come to her office at the district’s Central Office, located at 725 Harrison St. “There are several administrators in this department and we always make it a priority to sit down with them and come up with a plan to help them through the process.”

The Syracuse City School District has a long history of providing services to students with disabilities; Edward Smith K-8 School has had special needs-inclusive classrooms since the 1970s. The district continues to provide an autism specialist, instructional specialists and behavior support specialists. Its Office of Family Engagement provides services that include accompanying families to their periodic individualized education program (IEP) meetings.

“With the parents’ permission, they will come to the CSE (committee on special education) table and help advocate and help the parent with proper questions or things that they may not have thought of,” Evans said.

Local school districts work alongside advocates from nonprofit agencies as well. “It’s a tough process to navigate, but that’s our specialty, that’s what we do,” said Melissa Havener, lead education advocate with Arise, a nonprofit that provides support services to people with disabilities. Arise employs education advocates in Onondaga, Oswego, Madison, Cayuga and Seneca counties.

Havener said she receives referrals for special needs clients from a variety of sources, including teachers and school psychologists, principals, guidance counselors and physicians. “We are often in the community, presenting or working with a school district. We were just at the Literacy Night at Blodgett (elementary school), and there were three intakes from there.”

After initial contact, Arise advocates set up education intake meetings with parents or guardians. At those meetings, Havener guides families through paperwork including medical privacy forms. She helps them understand their legal rights and evaluates educational plans, including IEPs and 504 plans, which are basically blueprints for how schools will support students with disabilities and give them equal access to education. She attends committee on special education meetings, visits classrooms, assists with school transfers and helps with disciplinary hearings.

“We’re that bridgestone between the (school) district and the family, and it’s us in between helping them navigate the system,” Havener said.

Parents of children with disabilities often have to balance leaning on professional expertise with their own self-education and knowledge acquired by talking to friends. Jennifer Polak knows that drill.

“I think that one of the most important things that we learn from each other is really not even what we’re fighting for but actually how to prepare our arguments properly,” she said. “For example, you can’t walk into any kind of meeting and tell anyone that you want what’s best for your child. You have to tell them that you want what’s appropriate for your child and what’s fair.”

The Polaks are pleased with Walter’s support team at present. Walter is in a general education setting and has speech therapy twice a week. Although he still struggles with processing speech, he also has strong visual memory.

Because of Walter’s laser focus on languages, his mother is optimistic that he will figure out a way to use his unique communication skills in unexpected ways.

“I think someday this kid is going to make it possible for other people to communicate,” she said.

 

 

Common Abbreviations

504: Rehabilitation Act of 1973 (Public Law 93-112, Section 504)

ADA: Americans with Disabilities Act

AT: Assistive Technology

BIP: Behavioral Intervention Plan

CSE: Committee on Special Education

FAPE: Free and Appropriate Public Education

FBA: Functional Behavior Assessment

FERPA: Family Educational Rights and Privacy Act

IDEA: Individuals with Disabilities Education Act

IEP: Individualized Education Program

IQ: Intelligence Quotient

LD: Learning Disability

NYSED: New York State Education Department

OHI: Other Health Impaired

OPWDD: Office for People with Developmental Disabilities

OT: Occupational Therapy/Therapist

RTI: Response to Intervention

SLP: Speech Language Pathology/Pathologist

 

Special Needs Resources

ARISE Onondaga County. 635 James St., Syracuse. (315) 472-3171. TTY: (315) 479-6363. http://www.ariseinc.org/.

Syracuse City School District Department of Special Education. 725 Harrison St., Syracuse. (315) 435-4499. http://www.syracusecityschools.com/.

Exceptional Family Resources. 1820 Lemoyne Ave., Syracuse. (315) 478-1462. https://contactefr.org/contact-us/.

Syracuse University Parent Assistance Center/Mid-State Special Education Parent Technical Assistance Center. The New York State Education Department is not renewing the Parent Technical Assistance Center Grants (14 statewide) as of June 30. However, the SUPAC website is a good source of information: http://supac.org/. A SUPAC-led training session at Exceptional Family Resources, “Improving Educational Results for Students with Disabilities,” takes place April 19, noon to 2 p.m.

CNY IEP Discussions. Facebook group supports parents going through the individualized education program (IEP) process. https://www.facebook.com/groups/280257962031476/.

 

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