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Maggie F. Schulz was growing worried for her son.

Since kindergarten, he had struggled with reading and writing skills, and by third grade, he was receiving extra support five days a week — without any perceivable results.

Seeking answers, Schulz turned to outside help. She found a neuropsychologist, who diagnosed Schulz’s son with dyslexia and dysgraphia and offered an even more disconcerting finding: he had made no academic progress since kindergarten.

Cambridge Public Schools disagreed. Officials assured her that her son was “doing great” and even proposed reducing his services for the fourth grade, Schulz said. The cognitive dissonance, she said, was “really upsetting.”

Walking out of that meeting, she knew the battle for her son’s education had just begun.

Under federal law, all students with disabilities are guaranteed accommodations through individualized education programs or 504 plans, which are meant to meet each student’s specific needs. These plans, which are organized by the district, can include tutoring, specialized classrooms in Cambridge schools, or transportation to alternative schools out-of-district.

But parents, educational experts, and disability advocates said these accommodations alone often fail to position their children for success. In interviews, parents of children with special educational needs described having to fight tooth and nail to ensure their children receive the services they need.

Interim Superintendent David G. Murphy acknowledged that some families may face struggles in securing special education services for their children.

“There’s no school district that gets to the point where they do special education perfectly and there’s nothing else they have to do,” Murphy said in an interview last week. “It is constantly a work in progress.”

As CPS’ resources for students with disabilities are stretched thin, parents are increasingly fighting alone or with outside professional support — an expensive, time-consuming, and isolating endeavor.

For Schulz, it became a tricky balancing act between her job — working with high schoolers with psychiatric needs as a social worker — and her efforts to advocate for her son.

“It felt like we were just keeping our heads above water to manage the situation,” she said.

The Long Road

For many parents, the journey begins with recognizing deficiencies in their child’s learning — a realization that can take years.

Marcy W. West — whose first-grade child had struggled with reading — said it took the intervention of her sister-in-law, herself a teacher, before she could be convinced to set up a meeting with her child’s instructors.

“They were like, ‘Yeah, we’re concerned,’” West recalled.

Katherine B. Gamble, a local neuropsychologist whose child had an IEP, said that “it takes something going very wrong” for parents to come to such a realization.

“I have so many parents beating up on themselves: ‘I can’t believe I didn’t know. I should have been fighting for this a long time ago. I should have moved him.’” she said.

From there, navigating the IEP process and getting their students into the right learning environments can be an uphill battle.

Though West is a social worker who has sat in on many IEP meetings, she said that without her sister-in-law’s help, West would have been “lost.” West spent hours on the phone with her sister-in-law, who coached her: “Did they say that? Let me read this testing. What are you doing? Definitely say this, definitely ask for that.”

West said it took her four months to finalize her child’s IEP. In the meantime, at the recommendation of the IEP team, West paid thousands of dollars for outside tutoring out of her own pocket.

Cambridge parent John H. Summers said the district’s original IEP for his son Misha, who has autism, relied on an educational therapy — Applied Behavioral Analysis — that failed to show any perceivable results for his son.

It took a meeting with then-Superintendent Kenneth N. Salim to get Misha placed in an out-of-district school that better met his needs.

“I didn’t tell Salim before the appointment that I would bring Misha along,” Summers wrote in an email. “I wanted Salim to understand that Misha doesn’t exist on the papers we had before us, and that his ‘behavior’ was the product of a district curriculum that did not work.”

“Immediately after the meeting, I was given the green-light to transfer him out of district,” he wrote. (Salim wrote in an emailed statement that he did not recall meeting Summers’ son.)

CPS spokesperson Sujata Wycoff wrote in a statement that Applied Behavior Analysis is one of many approaches the district uses for students with individualized needs, calling it a “scientific and evidence-based approach.”

Many parents said their experience through the process was difficult and lonely, pointing to a lack of organized spaces to connect with other parents in similar situations.

“It felt like a very isolating experience,” Schulz said. “It’s not easy, necessarily, to connect with other parents because there’s no real way of doing it that’s organized.”

Cambridge has a Special Education Parent Advisory Council, mandated by state law, which offers an email listserv and a weekly support group for caregivers of children with special needs. But while parents expressed appreciation for the listserv, they said it wasn’t a substitute for the sense of community and robust support they were looking for.

“It’s been such a lonely battle,” wrote Kathleen M. Byrne, whose son is enrolled in Special Start, the district’s special education preschool program.

A ‘Chess Game’

Gamble, who works closely with students with special needs, said she has encountered two types of parents: those who “get what they need” and those who “get what they get.”

“The people who know what they’re doing end up in my office,” she added.

As parents navigate the complex landscape of special education, many are forced to turn to outside help: neuropsychologists, dedicated advocates, or attorneys who can help facilitate IEP meetings.

Ellen M. Chambers, a former Massachusetts special education advocate and the founder of the Special Education Watchdog Group, said the process of ensuring adequate IEPs, with its tangled web of arcane laws, was something like a “chess game.”

“Parents are rarely successful in getting what their child needs without the help of someone who really knows how the system works,” Chambers said.

“It’s not enough to just know the law,” Chambers added. “You have to know how to apply it.”

The neuropsychologist who evaluated Schulz’s son recommended that she hire an attorney to guide her through the IEP process.

With the help of the lawyer, Schulz was able to advocate for her son to be moved from Peabody School to Graham & Parks Elementary School’s language-based learning disability program. Schulz’s son entered the program in fourth grade and promptly made two years of academic progress in five months, she said.

District officials did not initially bring up the Graham & Parks program in their initial IEP meetings, according to Schulz, who said she only managed to secure the opportunity for her son through her own research and the help of a lawyer.

“It was unbelievable," she said. “It was exactly what he needed.”

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But these pathways are time-consuming and costly, according to parents.

“I still think all the time about how we were basically given this placement for our child because we were able to advocate for it,” Schulz said. “I can’t talk about this without talking about it as an equity issue.”

District staff encouraged West in her initial IEP meeting to seek private tutoring for her child with dyslexia — a cost that was hard on her household. She paid out-of-pocket for the four months until her child’s IEP was finalized, and was still told to “keep it as long as you can.”

“That is not a resource that comes easy to our family, and many other families do not have that resource at all,” West said. “It doesn’t seem OK,” she said.

Cynthia L. Moore, a special education advocate who has clients in Cambridge, said she would have told West to push for reimbursement for this expense.

“A competent advocate would review the child’s documentation before making specific recommendations,” Moore wrote in an email. “For example, the documentation could reveal that the child should have been found eligible years before and thus any compensatory claim could likely extend beyond reimbursement for 4 months of tutoring.”

Families can also file complaints with state or federal government agencies — another time-consuming and arduous process that requires substantial knowledge of special education policy.

After his son was placed in an out-of-district school, Summers filed two complaints — one with the Massachusetts Department of Elementary and Secondary Education and one with the U.S. Department of Education Office for Civil Rights — over the district’s busing services for out-of-district students.

But he acknowledged that most parents, already “overwhelmed and overburdened,” might not have “the time or the expertise” to assemble such complaints.

“I’m six-foot-three, I’m white, I’m a man, I have a Ph.D., I don’t mind speaking up,” Summers said. “But what about those other families? What about the immigrant families? What about the non-white families who don’t know the rules?”

‘Policy Issues’

Some parents — like Summers and Byrne — have taken it upon themselves to improve the system for everyone, not just their own children.

For months, Byrne has lobbied the city to institute extended day and extended year options to Special Start. The city’s brand-new universal preschool program, which now manages Special Start, offers extended day and year options to most families whose children don’t have special educational needs

Though she knows that nothing will change while her child remains in preschool, she said she is fighting for future parents who may find themselves in a similar position.

“I can’t stomach the idea that another round is going to go through, and similar families are going to be in the same position, and that the city is just allowed to to exclude children with disabilities like this,” she said.

Cambridge spokesperson Jeremy C. Warnick confirmed in a statement that no programs currently offer full-day, full-year care with the “level of support that Special Start provides.”

“This is actively being explored in order to create more options for families in the future,” he wrote.

In his complaint to the federal government, Summers said the lack of tracking for out-of-district buses constituted disability-based discrimination. With the state, he called the entire out-of-district busing system insufficient and asked for a “systemic” review.

“They tend to look only at the individual situation, and then they resolve it,” Summers said. “But this time, I want, particularly, them to look at policy issues, systemic problems with transportation.”

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On Sept. 5, the DESE found that Cambridge complied with state law on a number of measures, but that the district was systemically noncompliant on three items: insufficient training for bus monitors, monitoring of out-of-district placements, and inspections of equipment. The report enumerated a series of actions that the district must take to reach compliance.

Last month, NRT, the vendor responsible for out-of-district transportation, participated in a DESE training on increasing access to information available to bus drivers about student needs, according to Wycoff, who called the training “successful and generally well-received.”

At a Tuesday School Committee meeting, members adopted a resolution that called on the district to present a plan for out-of-district tracker implementation, as well as ensure timely and communicative transportation for in-district students.

School Committee member Elizabeth C.P. Hudson encouraged parents to reach out to school officials and committee members about issues facing their children.

“Tell the school. If the school isn’t listening, tell your representatives — the School Committee,” she said. “If the School Committee is not listening, tell everybody, tell people to pay attention.”

But Gamble, the neuropsychologist, said it shouldn’t be incumbent upon parents to “reinvent the wheel” for every student. Education experts said there are steps that school officials and policymakers should take to better support parents and students with special educational needs.

Paul Reville, a professor at the Harvard Graduate School of Education, said that most school districts operate “in good faith” but have limited resources to devote to special education.

Reville said that the state should require districts to inform parents of their rights and how to access advocacy resources at the initial IEP meeting — likening the solution to a “legal aid” system.

Even without updated statewide policy, HGSE associate professor Nadine Gaab said districts should improve reading curricula in early grades to better manage disabilities like dyslexia.

“We need to move to a proactive, preventative model where we actually find the kids who most likely will struggle with learning to read before they struggle with learning to read, help them, then put them on the right developmental trajectory,” she said.

Murphy, the interim superintendent, acknowledged that the district’s provision of special education has flaws. But he pledged to continue trying to improve it under his tenure.

“That work is not static. It has to be ongoing,” he said. “We have to be continually revisiting the way in which we support families of students with disabilities.”

Clarification: October 8, 2024

This article has been updated to clarify that Byrne’s adovacy is focused on lobbying the city of Cambridge — which administers the Cambridge pre-school program, not Cambridge Public Schools.

—Staff writer Darcy G Lin can be reached at darcy.lin@thecrimson.com.

—Staff writer Emily T. Schwartz can be reached at emily.schwartz@thecrimson.com. Follow her on X @EmilySchwartz37