Rebecca Newlon is finishing up her K-12 educational experience where it all began: at her former elementary school in McHenry, Ill.
An internship program there has given the 19-year-old, who has Down syndrome, the space to learn valuable lessons about adulthood. It’s also given her a chance to recover from the isolation of the early days of the COVID-19 pandemic.
“I like seeing my old teachers,” Newlon said. “I am one of the adults in the school and the kids learn from me.”
Like many students with disabilities, who are often at higher risk for severe illness from the virus, Newlon experienced seismic interruptions in her learning when her school closed for in-person instruction in spring 2020.
And, as K-12 schools shift into recovery mode for students with disabilities, the oldest students face a particular challenge: getting the most out of special education services before they seek to live more independent lives as adults.
Newlon walked at her high school graduation last spring, but she won’t receive her diploma from the McHenry school district until she finishes a special transitional program designed to help students with disabilities learn skills needed for life and work.
Some students in transition programs learn how to ride the city bus alone, how to balance a checkbook, or how to create a college-course plan. Newlon, who has long been interested in administrative work, spends three days a week at her former elementary school, learning skills that she can transfer into later office work, like sorting mail and managing paperwork.
In recent years, thousands of students who are a few years older than Newlon missed out on those experiences. Because of the pandemic, routes were restricted on public transportation. Workplaces that would normally provide on-site training for students closed their offices or limited access. And programs that emphasize hands-on experiences struggled with the transition to online learning.
Newlon’s mother, Chris, is both pleased and relieved to see her daughter thriving in the work. And she feels fortunate that the internship wasn’t interrupted by pandemic closures.
“We would like to see her as independent as possible. We’ve said that since she entered preschool,” said Chris Newlon, who said Rebecca comes home from her internship with “a smile on her face that we haven’t seen for a while.”
Meeting the needs of students before they ‘age out’ of special education
Around the country, advocates, parents, and policymakers are pressing schools to make up for lost time, in some cases by allowing students to stay beyond the time they would typically “age out” of special education services so they can have the best shot at successful entry into the workforce or higher education.
The Individuals with Disabilities Education Act, the nation’s primary special education law, requires schools to begin transition planning for students with disabilities at or before age 16, outlining goals for employment or postsecondary education and the social, emotional, academic, and life-skills supports that students will need to reach them.
For example, educators may work with a college-bound student with autism during their senior year to talk through the social cues of living in a dorm or help them identify a college program tailored to their needs, said Peg Kinsell, the policy director at SPAN Parent Advocacy Network, an organization that helps parents of children with disabilities. Other students’ transition plans may include lessons about their rights under federal law and how to advocate for themselves in housing, work, or higher education.
Some students, like Rebecca Newlon, stay beyond their state’s compulsory education age to complete individualized transition programs. Under federal law, schools must allow students to remain enrolled in the K-12 system up to age 21, although some states permit programs to extend until students turn 22.
In a typical year, that extra time can be valuable for students who need more-intensive supports to finish their education. But for those who aged out of those services during the pandemic, the last few years can feel like a wasted opportunity, Kinsell said.
“One of the most important components [of transition programs] is that community-based instruction: job sampling, taking classroom skills and generalizing them to the community, learning to ride the city bus,” Kinsell said. “Not being a part of it in person just took all of the steam out of the engine.”
Federal law requires schools to provide compensatory services for students with disabilities to make up for interruptions in services that caused them to fall behind on expected progress. The U.S. Department of Education has said schools may need to meet that requirement by extending the age of eligibility for students who aged out of special education services during school closures, using federal relief funds to cover additional services if necessary.
In states around the country, advocacy groups have pushed for new state laws or orders that allow students who turned 21 or 22 during the pandemic to remain in school an additional year. States that have adopted such policies include Illinois, New Jersey, New York, and Pennsylvania.
During the pandemic, older students with disabilities are facing “real hardships because of the crisis conditions that make it hard for them to participate in the services and activities that will enable them to realize their potential,” said a statement from then-New Jersey state Sen. Steve Sweeney, a Democrat, after a bill he helped write passed in 2021. “These educational programs are key to their quality of life.”
The New Jersey bill requires schools to provide an extra year of services to enrolled students who turned 21 during the pandemic, including during the 2022-23 school year.
Such efforts are critical for families of children with disabilities who need more-intensive supports and who may see their children’s age-out date as an urgent timeline after which they will lose access to the therapies and services they have relied on for years, said Stephanie Smith Lee, a senior policy adviser for the National Down Syndrome Congress.
“There’s so little time left for these families before they hit the cliff,” she said.
Parents learn to navigate compensatory services
It’s unclear exactly how many students these new state laws will affect. About 7.2 million students ages 3-21 received special education services during the 2020-21 school year, representing about 15 percent of total U.S. public school enrollment, federal data show. During the 2019-20 school year, 5,172 students with disabilities exited high school because they reached the maximum age of enrollment, according to the most recent data.
In most states, taking advantage of that extra year requires a determination by the student’s individualized education program, or IEP, team that the time is needed for compensatory purposes after the pandemic. Such determinations are also needed for students on more typical diploma tracks to receive extra services, like physical therapy and tutoring, to help them regain progress that may have been lost during school interruptions.
But parents of students with disabilities—in all ages and grade levels—are often unaware their children may qualify for compensatory services, advocates say.
I think a lot of students will have aged out or graduated without getting the compensatory education they are entitled to because they didn’t know to ask.
“I think a lot of students will have aged out or graduated without getting the compensatory education they are entitled to because they didn’t know to ask,” said Robin Lake, the director of the Center for Reinventing Public Education, which has compiled research and data to trace the impact of the pandemic on students.
A major example: The Los Angeles Unified school district agreed in April to publicize compensatory offerings and to assess the recovery needs of students with disabilities after the federal Education Department’s office for civil rights determined its offerings had fallen short.
After failing to adequately track whether students received required services during remote learning, the district erroneously advised educators not to use the term “compensatory education” in IEP meetings, asserting in a training webinar that “compensatory education is not intended for situations such as the COVID-19 pandemic,” the Education Department investigation found.
Some advocates saw the L.A. agreement as the tip of the iceberg, an indicator that much smaller school systems around the country likely had similar faults.
Parents of students with disabilities often become ad hoc experts in applicable federal laws, learning to press for their children’s inclusion in general education classrooms and to navigate the IEP process, advocates say. But even the most well-studied parents might not have known about compensatory services before the pandemic.
Groups like the SPAN Parent Advocacy Network and the Council of Parent Attorneys and Advocates have worked with local networks of parents to make them aware of their children’s legal rights during pandemic recovery.
In New Jersey, advocates successfully pushed the state legislature to enact a new law that temporarily extends the timeline for parents to request a due process hearing. It also requires schools to hold IEP meetings with all students in special education programs before the end of the current calendar year to determine what compensatory services may be appropriate.
The new law took the onus off parents to initiate such conversations, said Kinsell of SPAN.
Conflicting priorities for students with disabilities
The pandemic presented conflicting urgent priorities for families of students with disabilities. On the one hand, many of those disabilities gave children significantly higher chances of severe illness if they contracted COVID-19, making it risky for them to learn in person, even after schools reopened. On the other hand, learning remotely robbed students with disabilities of chances to engage in needed experiences and services.
In response to that tension, some families of children with conditions like Down syndrome sued when states prohibited universal mask requirements in school. They said abandoning such precautions effectively barred their children from safely learning with their classmates, arguing that it was akin to removing a ramp for a child who uses a wheelchair.
Rebecca Newlon, the Illinois student who is now in a transition program, was in her sophomore year of high school in spring 2020, when schools around the country quickly shut down as the virus spread. Because she has a heart condition that put her at higher risk, she remained in remote learning until she could get vaccinated, near the end of her junior year.
She spent her time at home in an extra bedroom the family set up for remote learning. While Newlon was able to participate in many general education classes successfully online, she couldn’t fully receive services like physical therapy for her balance and endurance. Her family tried to supplement with long walks and workouts on an elliptical machine.
She can also feel shy at times, and time away from school was difficult for her social development.
“I missed my friends,” said Rebecca, who spoke with Education Week via email. “I missed some of the fun things like Spirit Week.”
After helping other parents of children with disabilities navigate the IEP process for years, her mother, Chris, believes the process is even more difficult now, as families look back on what their children missed.
“It’s a lot of work on the family because it seems like the school is not going to initiate that at any point—unless you’ve got an amazing school system,” she said.
The internship job at Rebecca’s former elementary school, created with her family’s input, allows her to interact with familiar faces while learning new skills. It’s been so successful that the school’s administrators have looked for ways to involve her in tasks in the library and classroom activities, like student reading groups.
For the two days she’s not at work-study, Rebecca meets with other students to practice skills like initiating conversations and managing money.
Chris Newlon said the experience has helped her daughter bloom after a rough few years. But the future after high school is still a bit intimidating.
“There is such a limited time that you can get this much help for your child as a young adult,” she said. “To have that pulled out from under you, it’s a crime.”
