“It becomes almost a full-time job,” said Denise Marshall, executive director of the Council of Parent Attorneys and Advocates. “They need to research not only the laws but, many times, they need to research curriculum and strategies, such as applied behavioral analysis for children with autism or other types of interventions for students with dyslexia.”
Said Moroff, “Our support line got around 3,000 calls just last year from parents who are struggling, who have questions, who don’t know where to start, don’t know where to turn, don’t know what their next steps are, don’t understand why their school isn’t seeing their kids' needs the same way."
Imbalance of power
Since education is locally controlled, every school district has its own priorities and funding abilities. Some districts’ administrators have no problem creating specialized programs for high-needs students, while administrators in a nearby town might be more concerned with saving money. Even within a district, there can be major differences, as individual principals play a big role in shaping the culture of a school.
Marshall said that even though parents are supposed to be equal partners in their children’s education, the school holds all the power in determining a student’s placement and education.
Accommodations for the estimated 7 million K-12 students with disabilities across the country are generally worked out in small meetings at their schools, and only a tiny percentage end up in a serious dispute, she said. Still, if a parent disagrees with the school’s determination, what is supposed to be a collaborative relationship can get tense.
Wealthier families can hire experts to intervene on their children’s behalf and have the time and money to spend advocating for their kids; students in more privileged neighborhoods are more likely to get extra time on exams and other special ed modifications. But for some, less privileged, parents, just going to an IEP meeting during school hours can be a heavy lift; children from low-income families are more likely to be shunted into more restrictive classrooms, separated from typical peers.
“One big factor is definitely time as it relates to being able to interact with the school, go to meetings, do all the things that you need to do for your child during the day,” Marshall said. “Not everybody can afford to have one parent make this their full-time job. … Sometimes they lose their jobs over needing to deal with the school system and issues that are related to their child with a disability.”
For these families, social media can be a great leveler. Parents needing to educate themselves can get the information they need right on their phones — which is especially important for low-income families and parents for whom English is not their first language, and who may not have access to computers and internet connections.
Strate said she used to see more affluent people on her website, but now there’s a greater mix. She also sees people from overseas popping in to ask questions because they’re moving to this country to get help for their kids — which she finds concerning.
“Social media — it’s a wonderful thing,” she said, “but it can create big problems. If people pick up and move based on what they read on social media, they might be in for a nasty surprise. Programs can change overnight. Classrooms can fill up. … Parents should do their own research.”
Morin agreed, saying, “I worry that they’re not always getting accurate advice.”
But, she added, “I think there are some really good moderated groups where there are people who are trained and understand the system to be able to really gently jump in and say, ‘I really understand that, that’s your experience, and I think that’s really helpful to share. But here’s some other information you should check out about the law and for guidance for the things that you can do when you go into a school.’ Or, ‘Sure, this is how qualification eligibility works in this state versus that state.’ And I think that’s when it’s most helpful, when you have somebody who’s sort of moderating to make sure that people are getting accurate information. Because the last thing I want to do when I see these kinds of conversations is set somebody up for failure, because they already feel like they might be failing.”
Said Strate, “I tell people, go to your town’s Board of Ed meetings and read the minutes to see what they say about special education. Most towns post their minutes on the internet. I also tell parents to go to an administrative-law website. If due-process suits were not settled, it will be listed there. Google the town and write in ‘autism.’”
Most listserv users chat about offerings in nearby towns — information that can come in handy when looking for out-of-district placements or when negotiating with their local district.
But for others, like Webber, that information may lead to bigger changes; what she learned online made moving halfway across the country seem like the best option for her son, whom she described as “a 5-year-old in an 11-year-old body.”
By consulting with parents on these forums, she learned that schools in New Jersey provide ABA services, while schools in Michigan do not. “I did all my research, and to me, it just sounds like there’s better services out there for [students with autism], especially when they get older,” she said.
Moving with her 13-year-old daughter and her son across the country would be no simple matter. Webber’s husband passed away two years ago, so she’d be making this move on her own. Her parents, who joined her in Michigan a decade ago, will remain there until she’s settled. She’s worried about her children’s adjustment to the move, especially her daughter.