Since schools closed in March, Deborah Tomai has sat alongside her son, a 9-year-old with Down syndrome, as he made gains in class, developed as a reader, and grasped concepts, such as regrouping, in math class.
But she struggles to keep him focused and motivated during his remote-learning sessions. One day, she left him unsupervised in front of his computer to take a phone call. When she came back minutes later, he was in their backyard climbing a tree.
The Tomais live in Edinburg, Texas, where in-person schooling has not resumed as the Rio Grande Valley region continues to fight an alarming surge in COVID-19 cases. The family of five has tried to make the most of their distance learning time, though they realize the youngest child desperately misses and needs the support services and routines that in-person schooling provides.
By law, students who are denied or miss out on special education services are entitled to compensatory, or make-up, services. Now, as the pandemic stretches on, more families are seeking help for children with disabilities who are suffering learning loss.
The Tomai family could be among those who benefit from a program in Texas designed to support students with severe disabilities who have suffered learning loss or skill regression during the COVID-19 related school shutdown. The governor and the state education agency in Texas have designated $30 million in federal Coronavirus Aid, Relief, and Economic Security Act funds to offer one-time grants of up to $1,500 for families to use for therapy, tutoring, and other services.
"It's just a recognition that, even in the middle of this, we know that there's decline happening," Tomai said of the program.
But the situation in Texas lays bare a cold calculus: Millions of students with disabilities across the country likely suffered learning loss and skill regression during the school closures brought on by the COVID-19 pandemic, but there is not enough money to go around to help them all make up for lost time. The Texas plan, known as the Supplementary Special Education Services program, would scratch just the surface of potential need in that state. It is designed to supplement-not replace-the services and resources outlined in a student's Individualized Education Program, the carefully constructed, legally binding plans designed to meet the educational needs of children with learning and physical disabilities.
The state has an estimated 588,000 students in K-12 schools with disabilities; at most, 60,000 families would be eligible to receive some support. But even then, those eligible families-who comprise about 11 percent of the overall special education population-would not be eligible for the full amount.
If eligible, Tomai would use the money for behavioral therapy for her son and training for herself, to help her better understand what he needs from her to make it through each school day.
The rollout of the Texas plan has been met with criticism from disability rights groups for its limited scope and focus on so-called low-incidence disabilities that would provide support for students who are deaf, blind or have significant cognitive impairment.
"I'm not clear that there's any reason to believe that students with low-incidence disabilities need services more than any other students in special education," said Dustin Rynders, the supervising attorney of the education team at Disability Rights Texas.
There is widespread agreement among school districts and disability rights groups that providing compensatory services does not mean that every minute, or even every hour, of missed services needs to be accounted for. But even that narrowed focus on quality over quantity could bust district budgets: Providing a $1,500 grant for every student in Texas with an IEP would cost about $882 million at a time when many states and districts have reached into their reserves for other COVID-19 education-related expenses.
"It would break the system of public education if we tried to compensate for everything that everyone has lost," said Phyllis Wolfram, the executive director of the Council of Administrators of Special Education, which represents district-level officials.
That means some students will inevitably be left out of the equation. The reality has left schools to wrestle with a dilemma: Deciding who gets access to compensatory services while acknowledging that failure to provide adequate support to students who struggled during distance learning could leave districts exposed to costly, time-consuming lawsuits.
Wolfram said school districts around the country are bracing for an onslaught of lawsuits.
"Nobody is going to hold a school district responsible for doing the impossible," said Andrew Feinstein, a Connecticut-based lawyer who represents children with disabilities and their families. "But that is far different from holding the district responsible for failing to provide an appropriate education because it was inconvenient or expensive."
Massachusetts is among several states that have already set deadlines for determining who will receive compensatory education services. By mid-December, the state department of elementary and secondary education wants districts to determine which students with "severe and complex needs" are eligible for services.
The state education department did not provide an estimate on how many students statewide are in the high-needs category, which includes children who are homeless or in foster care, English-language learners with disabilities, and students who could not engage in remote learning because of their disability-related needs, but it is not an insignificant number.
The Boston school system, home to 11,000 students with IEPs, is scrambling to provide services and supports to students with special needs and meet the state deadline for determining eligibility for compensatory services.
The district suspended all in-person learning in late October due to a spike in the citywide coronavirus positivity rate. Without opportunities for in-person student assessments, it is "challenging to collect the data to understand what students need," said Ethan d'Ablemont Burnes, the assistant superintendent who oversees special education in the 54,000-student district.
Overall, the state has about 177,000 students with IEPS. Many of those will have to wait for a second round of compensatory services-related evaluations.
"We felt it was important for us to be clear and put a stake in the ground around the students with the most significant and complex disabilities," said Russell Johnston, the senior associate commissioner at the Massachusetts education department.
Guidance documents issued in several states recommend that schools clearly assess what progress students made toward meeting their IEPs and have meaningful discussions with parents and other caregivers to determine what students learned and lost while out of school.
When determining who covers the cost for services, especially when children have switched districts since last school year, the Massachusetts guidance recommends that the current school district determine eligibility and the former district take financial responsibility.
The supplemental support offered to families in Texas and other states is a concession or temporary fix that could help ward off legal action while states make decisions on compensatory services, said John Eisenberg, the executive director of the National Association of State Directors of Special Education.
"We know, no matter what, there are going to be kids who just cannot make progress online, even with the best of online instruction," Eisenberg said. "It makes sense to get more services in the hands of kids who might have fallen further behind so that you might avoid" due process hearings.
Maribel Farish, another Texas parent, counts herself among the lucky.
After six weeks of distance learning to start the school year, her son, a Houston public schools 4th grader who has cerebral palsy and impaired vision, is back in class.
Well before the pandemic shut down schools last spring, she and her husband hired a tutor for him. And, while some students with disabilities languished without school or support, the tutor worked with him throughout the summer.
Farish is a 2020 graduate of Texas Partners in Policymaking, an eight-month fellowship that develops advocacy and leadership skills in adults with developmental disabilities and family members of children with disabilities.
A native Spanish speaker, Farish wants the state to ensure that families of English-language learners and students who live in poverty know about the funding available to them through the state's Supplementary Special Education Services program.
"This won't close the gap, but it certainly does help," Farish said. "But, for it to help, people have to know about it." In Texas, the funds will pay for services and resources from vendors approved by the Texas Education Agency. Families will make purchases through an online portal scheduled to open later this year.
"Schools are telling us that they're stretched thin and that students across all [special education] categories are struggling right now and need help," said Rynders, the supervising attorney of the education team at Disability Rights Texas. "So, we would just advocate for a more comprehensive approach."
In states where many districts remain in distance-learning or hybrid-learning models, it may be too early to push for compensatory services, said Feinstein, the Connecticut-based disability rights lawyer.
Some schools that opened their doors for in-person learning have been forced back into distance learning because of the fall surge in COVID-19 cases-and that could happen in more places, once again separating students from the services they need.
"As far as compensatory services, I haven't even asked about them yet because I don't even know when that would be available," said Tomai, the parent in the Rio Grande Valley. "We're not even back in school yet. How are they even going to compensate at this point?"