PROVIDENCE — One family after another testified before the Senate Education Committee on Wednesday about their desperate, often fruitless, struggles to get schools to accommodate their children’s special needs and disabilities.
Some of them held photos of their children as they spoke before lawmakers. Their words were emotional and, at times, heartbreaking.
Lawmakers heard about Dillon, who has autism and sensory disorder, and started first grade by being sent to “an autism room” when teachers didn’t know what to do with him. When he misbehaved or took off his clothes, they called 911, said his mother, Renee Smith of Coventry, R.I.. She found another public school, just down the road, which had a comprehensive behavioral program that met his needs. She worries about what will happen next year, when he changes schools for sixth grade.
There was Ava of Johnston, R.I., who has nonverbal autism and harms herself, and has spent the last year living at Bradley Hospital. She is 12, and has cycled in and out of hospitals, with inconsistent access to an education. Her mother, Kerri Cassino, said her daughter and others are treated like “throwaway kids.”
There was Charlie of Woonsocket, R.I., whose autism and anxiety left him socially isolated and failing his classes. He attempted suicide several times, starting when he was 13. Even after the family filed a complaint with the state Department of Education after he was unenrolled, it took a year to get a decision. His family spent $40,000 in legal fees and $300,000 on a special school in Utah where Charlie, now 19, finally thrived, learned, and made friends.
But what about the families who don’t have the resources to fight for their children? What about the families struggling to get by? What about the families who don’t speak English and don’t know how to navigate the education bureaucracy, asked Charlie’s father, Walt Steenbergen.
Charlie’s little brother, 16-year-old Mitchell, said he was speaking for other siblings of children with special needs, who see how much their parents have to devote to getting help. “We want to prevent this from happening to other families,” he said.
Families like the Steenbergens believe the solution lies in legislation sponsored by Woonsocket Senator Melissa Murray to create an Ombudsman Office for Special Education.
The office would be independent of the state Department of Education and intended to ensure that school districts meet the standards required in the Individualized Education Programs, or IEPs, for students with disabilities.
The bill includes a whistleblower clause to allow school staff and providers to anonymously report their concerns about school accommodations. The office would also collect data about possible violations and would have investigative powers for school districts and the state Department of Education.
The legislation has the backing of The Arc Rhode Island, Rhode Island Kids Count, and State Child Advocate Jennifer Griffith, who works on behalf of children in state care.
She sees this new ombudsman position as someone who can advocate independently for children with special needs, investigate complaints, and hold the state Department of Education and school districts accountable.
“When you have an active advocate, it really does drive the change you need in the system and frankly not be beholden to any agency,” Griffith said. “I cannot underscore the importance enough of being independent and impartial.”
However, lobbyists with the Rhode Island School Superintendents Association, the Rhode Island Federation of Teachers and Health Professionals, the RI School Committee Association, and others opposed the legislation, calling it another layer of bureaucracy.
Timothy P. Ryan, of the Rhode Island School Superintendents Association, said it was “a well-intentioned bill,” but a big financial commitment for the state. “I’d like to hear more data and have a study group of what process is now,” Ryan said. “There’s fears some of this situation could lead to more legal action to put us in the courts, which is the last place we want to be.”
That was met with push back from committee chairwoman Sandra Cano of Pawtucket, Middletown Senator Louis DiPalma, who is a cosponsor of the bill, and Senator Jeanine Calkin of Warwick, who talked about the calls that they’ve fielded from their own constituents with stories of frustration and hopelessness.
The pandemic highlighted issues, exposing the lack of programs and support for children with special needs, DiPalma said. Both he and Calkin said they saw the ombudsman as a “voice for families.”
The Individuals with Disabilities Education Act and Americans with Disabilities Act guarantees that children are entitled to a free and appropriate public education regardless of disabilities.
However, parents from all across the state testified about their own grief and frustration as they struggled to find help for their children.
“We feel like we’ve failed as parents,” said her father, Richard Cassino.
Parents and special-education advocates testified about seeing blatant non-compliance with children’s IEPs. Some hired lawyers to help them pressure schools to follow children’s education plans. Some left their careers to fight for their children. Some were simply worn down and exhausted.
Joanna Scocchi, the state director of The Arc Rhode Island, testified about the numerous battles she had to get her autistic son the help he needed — knowing that he’d be lost if she didn’t. “If I didn’t, my son would be in the basement of my house with sleeping bags over the window,” she said.
And now, she hears the stories from families she advocates for often, and their fears as the children suffer.
“There is too much wrong with our very broken system,” said Scocchi.
And Calkin was moved by some of the testimony. “No child should feel like a throwaway kid,” Calkin said, through tears.
Amanda Milkovits can be reached at firstname.lastname@example.org. Follow her on Twitter @AmandaMilkovits.