Sammy was born unresponsive, and it took frantic doctors four minutes to wake him up. He was partially paralyzed and had a speech delay, unable to say “mommy” until he was 4 years old.
And yet today, thanks to intensive treatment in special education programs and therapy, Sammy is a first grader who can recite his times tables and tell you everything about the solar system.
“He’s a big, beautiful teddy bear,” says his mother, Danna Dennis.
Why, though, did Dennis have to fight so hard, for so long, to get the help her son needed — and was entitled to? Why did the state Office of Special Education, which is supposed to ensure his rights, fail the family so badly? Why did she have to wage an epic court battle, all on her own?
And how many disabled kids don’t have such a determined parent, and fail to get available services?
“I spent years staying up to 2 o’clock, 3 o’clock in the morning researching law codes,” said Dennis, from East Orange. “It has taken an emotional toll on me, my mental health, my anxiety.”
It’s infuriating to Dennis, and to many parents who have gone to the state for help and come away empty-handed. New Jersey has among the highest rates of parents bypassing the state’s free complaint process and instead engaging in costly legal proceedings, according to a federally funded data tracker called CADRE.
“We are already parents raising children with challenges, and we go through a lot on a daily basis,” she said. “How dare you create these systems that block us out?”
Credit: (John Mooney/NJ Spotlight News)The state Office of Special Education doesn’t function as it should, families and some legislators say. Parents often don’t know that the office exists and even when they do, they say it sometimes brushes off their requests to investigate issues. When the state does find in their favor, parents say, it may do little to fix the situation. And when a school district offends repeatedly, the state usually does not consider systemic reform but instead sticks with case-by-case examinations.
‘Hamster wheel of offenses’
Over the past two years, parents have sent nearly 3,000 requests to the Governor’s Office or its constituent relations team for information about the Office of Special Education . Many are now calling for an investigation of the agency, which is intended to protect the most vulnerable children.
“It’s like a perfect storm of awful,” says Assemblywoman Dawn Fantasia, a Republican from Sussex County who sits on the education committee. Districts deny care to contain costs, the state lacks the capacity to step in effectively and families are stuck in the middle, she says.
“It’s like this hamster wheel of offenses,” she added.
The Office of Special Education is a division within the state Department of Education that acts like a referee, charged with ensuring New Jersey’s nearly 600 school districts are actually doing what the law requires for the roughly 250,000 kids in special education programs.
The Department of Education declined to answer questions about some of the basic facts of its efforts to advocate for those students with disabilities, including the size of the staff charged with the task. Education officials would not discuss cases like Dennis’ or the widespread concerns raised by families, advocates and some lawmakers.
Over the past year, the state says, more than half its investigations found school districts noncompliant. But what does it matter if the state rules for a parent, critics argue, if the district itself is often left to decide the remedy? How do families and the public know that a child will get the right services?
When some districts are repeat offenders with clear violations, like failing to read a child’s individualized education program, or IEP, the state generally continues to investigate cases one by one. Instead, advocates say, why not do a deeper dive to examine the quality of what a district offers? The state does this only if a complaint is specifically filed as “systemic,” according to a former education department staffer, speaking on the condition of anonymity because the person was not authorized to comment publicly.
Public records request
Under a 2023 agreement with attorneys for the Education Law Center, which advocates for public school children, the state acknowledged its responsibility for examining and remedying a broad scope of complaints. It’s not clear whether this is happening. The state, in addition to probing procedural violations like missed deadlines or paperwork, is supposed to investigate more substantive matters, such as whether a child has an appropriate program and is learning, the law center says.
State investigations can be cursory and lack transparency, parents say. The state interviews the parent and district staff, though it’s “not generally going back and forth,” according to the former education department staffer. Families don’t get to see a case file that shows what claims the district submitted — the only way to know is to file a public records request. The state says that is to protect student privacy, since complaints may involve multiple children.
Often, though, a case file involves only one. And if the district makes a false claim without evidence, the parent may never find out.
Families say the state wasn’t telling them how to ask for a reconsideration of its decisions until they formally complained. Then the state did not acknowledge the point, those families said, but just started adding that information to the bottom of its emails a few months ago.
Another systemic problem: If someone files a complaint against the state Office of Special Education itself, it is typically handled by that very agency. Instead, why not use an independent investigator?
Granted, some of these cases are complex and can drag for years in court. It can be a lot for the state to take on. Artificial intelligence has also made it easier for parents to file state complaints, which must be settled within 60 days.
The system sounds good on paper, but parents say the promise is broken every day, and that the state lacks the capacity or the will to effectively advocate for them.
$60,000 aide
“All of it sort of depends on having this state office that’s robustly funded and staffed, where the staff is appropriately trained,” says Elizabeth Athos, an attorney with the Education Law Center.
Districts have their own goals, and one of them is to contain the enormous cost of special education. The average mainstream student costs $20,000 annually, and adding an aide could cost another $60,000, or $300,000 at a specialized school.
The state does formal monitoring of district special education programs every six years and collects data annually about the outcomes of students with disabilities, the former education department staffer says. That’s not the same, though, as a deep examination of a problem identified by multiple parents.
If the state office allocates more resources to inquiries, that might require cuts to its other special education programs, the former education staffer noted.
“I represented myself. I speak English very clearly, I’m educated, I can file a motion. I can’t imagine a parent going through that who speaks English as a second language or has anxiety.” — Ashley Meyer
Consider the exhausting struggles of families who say justice shouldn’t be a luxury only for those who can afford to sue.
Credit: (Ashley Meyer)Ashley Meyer’s 10-year-old son with severe autism, Jack, can get agitated, hit someone or hurt himself if he doesn’t have a behavioral aide with him 24/7, she says. Sometimes Lacey Township denied the aide — and then kicked Jack out of school, Meyer says. She filed a series of complaints with the state saying, among other points, that the district did not evaluate him to determine whether the incident was related to his disability, which might have allowed him to return to school.
When the district also denied Jack legally required home instruction, she says the state dissuaded her from adding that to her complaints, telling her the schools are often given leeway.
“They blew me off,” Meyer says.
So she got an emergency court order, then drove an hour each way to and from Atlantic City to appear before a judge. By herself, she argued against the school district’s attorney — and won.
“I represented myself. I speak English very clearly, I’m educated, I can file a motion,” she said. “I can’t imagine a parent going through that who speaks English as a second language or has anxiety.”
Maria Lorenz, an Elizabeth parent, says her son was told to run sprints in gym class despite a heart condition. The key issue – that teachers were not reading his individualized education program – continued to be a problem even after the state ordered corrective action, she says. So long as a district checks the boxes procedurally, like requiring training, that seems to be enough.
“There’s no light bulb that goes off on the state’s side to say: Maybe we need to look at this district a little bit closer,” she said. “They’re just there to kind of be like mom and say, ‘Cut it out … play nicely in the sandbox.’ That does nothing. There’s no accountability.”
Another parent, Kai Collins, has a daughter with a visual processing disorder that causes debilitating headaches. Denied vision therapy and placement in a specialized school for her daughter, Collins is appealing in court, alleging that the district made false claims without evidence. She made that discovery, she says, only after filing a public records request for the all the district’s communications with the state.
“They said we rejected all sorts of things,” she said, “and they would never be able to prove that, because it never happened.”
No more 401(k)
Even when the state finds a clear violation, it may not be fixed, says Athos, the attorney. After the state found the Community Charter School of Paterson wrongfully put a student in a half-day program, it ordered the school to convene a meeting to determine if compensatory services were warranted – without telling the parent what amount or type of services the child is entitled to.
Parents are not seeking help “for idle things,” notes Dawn De Lorenzo, an advocate who mortgaged her house to take her daughter’s district, Greenwich Township, to court. “It is literally to have the laws that are on the books enforced,” she said. “And if there is no enforcement mechanism, a law is meaningless.”
Ashley Beiro spent nearly $300,000, cashing in her 401(k) and other accounts and living on credit cards to afford a court fight against the Howell school district so her daughter, with autism, would have social interaction rather than be confined to a self-contained class for kids with special needs.
Beiro won. But that kind of legal odyssey isn’t an option for most people, she notes.
“Unfortunately, their kids take a hit and don’t reach full capability, which is sad,” she said. “The system is very broken, and all we can do is change it one child at a time, one decision at a time.”
