Parents rally for creation of special education 'watchdog' for students with disabilities
WARWICK — Parents of special-needs students spoke with emotion at a rally on Saturday, recounting the lengths they've gone to in fighting for their children's education.
Some drained retirement savings and took out second mortgages to pay for lawyers and education advocates. Others watched relationships fray due to the pressure as they endured their children’s repeated hospitalizations and, for some, even suicide attempts. There were tears, frustration and lost jobs.
“It could have broken us, and it broke us financially,” said Walt Steenbergen, whose 19-year-old son, Charlie, is on the autism spectrum and is diagnosed with neurofibromatosis.
Steenbergen, his wife, Priscilla, and Charlie were among the 50-plus people rallying Saturday at the Warwick Center of the Arts in support of legislation that would create an independent special education ombudsman to help parents of special-needs children navigate what can be a daunting and discouraging process.
“We all know that we need a special education ombudsman in Rhode Island. We all know the system is broken,” said Joanna Scocchi, director of The Arc Rhode Island, a family advocacy network for children with intellectual and developmental disabilities.
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Scocchi told of selling off properties and a sailboat to pay for her son, who is diagnosed with high-functioning autism and has the learning disorder dyslexia, to attend The Gow School, a language-based learning school near Buffalo, New York, after a bruising fight with the South Kingstown School District. (The school district ultimately prevailed in a battle in federal court.)
“The schools refused to recognize it,” Scocchi said. Today, Peter, 23, is about to graduate from college with a degree in engineering, joined a fraternity and competes on the crew team.
“This is a young man who would not go to school. I was crying all the time. He couldn’t go to a large school because of his autism,” she said. She vowed after her fight for her son that no other parent would have to go it alone, founding Rhode Island Advocacy for Children, she said.
“Our children are supposed to get a free and appropriate education," Scocchi said. "It’s not OK that we just throw these kids away.”
Ombudsman would function as both watchdog and resource for parents
The legislation calls for the creation of an Ombudsman Office for Special Education, which would serve as an independent watchdog and serve as a resource for parents if they believe their children’s educational needs are not being met, as required by federal law. The Individuals with Disabilities Act and the Americans With Disabilities Act guarantee that students are entitled to a free and appropriate education, regardless of their disabilities.
Once a disability is recognized, the district, in conjunction with parents and professionals, must develop a plan to address the child’s needs through an individualized education plan or provide accommodations through a 504 plan. IEPs and 504 plans are intended to ensure the student can access learning and achieve academic success.
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State Rep. Lauren Carson, D-Newport, said the proposal’s passage is even more vital following the pandemic.
“I don’t think we even know yet what those losses are,” Carson said. The ombudsman would report annually to the General Assembly and would function as a watchdog, much like the Rhode Island Child Advocate, which oversees children in state care, she said.
The rally drew Ashley Kalus, Republican candidate for governor; Omar Bah, a Democratic candidate for Congress; and a number of state lawmakers.
Jessica Calvino saw her 13-year-old daughter, Eliza’s, grades plummet from the honor roll level to lows she didn't believe possible during the COVID pandemic. Eliza was beset with anxiety, depression and panic attacks, prompting her mother to seek out a neuropsych evaluation.
“She was learning differently. They didn’t want to honor it. It was like fighting tooth and nail,” Calvino said of the Bristol Warren School District.
Steenbergen recalled Charlie’s teachers failing to meet an IEP requirement that they write down his assignments in his agenda every day.
“He kept falling farther behind in class. He could see he was failing,” causing him to grow increasingly stressed out, to the point that he attempted suicide, Steenbergen said. Ultimately, the family paid for Charlie to attend a residential treatment program in Utah that adapted to his specialized learning.
Why do some organizations oppose the ombudsman bill?
The legislation — which has failed to win passage in the past two sessions — has detractors. Several organizations, including the Rhode Island Parent Information Network, which supports families of children with special needs; and the Rhode Island Association of Special Educators, are critics of the bill.
Tim Duffy, director of the Rhode Island Association of School Committees, earlier this year faulted it for leaving too many unanswered questions, including the size of the new office and its cost.
The House version has been forwarded to the finance committee.
This article originally appeared on The Providence Journal: RI parents rally for creation of special education 'watchdog'
