PolicyLab

Editor's Note: This is part of our Mental Health Awareness Month blog post series, which focuses on how COVID-19 impacts child and family behavioral health. We invite you to check back for new posts or to follow along for updates on Twitter at @PolicyLabCHOP.

Last month, we recognized Mental Health Awareness Month through a blog post series that brought much-needed attention to just some of the mental health impacts of the COVID-19 pandemic on youth and their families. However, we know that the issues we raised will continue to be important as the pandemic progresses. One group whose mental health is particularly at risk is parents of children with special needs or disabilities—they are more likely to have symptoms of depression than parents of children without disabilities.

As we previously wrote, approximately one-quarter of parents of children with conditions such as autism spectrum disorder, Down syndrome, or attention-deficit/hyperactivity disorder had elevated symptoms of depression or anxiety before COVID-19 struck. The reasons for these heightened rates include financial stressors, feelings of self-isolation and the ongoing need to provide care beyond levels expected for a child’s age. These same risk factors are intensified by the COVID-19 pandemic; increasing financial stress, social distancing and caring for children 24-7 augment these challenges. 

Additionally, with schools in Pennsylvania closed for the rest of the academic year, many parents find themselves serving as teachers, often while they continue working. This is even more challenging for parents of children with special needs, who feel that they must also provide therapies, such as special education, speech therapy or behavior support, to their children, while usual therapeutic supports have been discontinued, reduced or moved to a virtual platform. A recent national survey found that 4 in 10 children in special education are not receiving any services at all.

In Pennsylvania, 15-20% of children typically receive special education services, so these service changes affect many families. The families we see through our respective roles as a developmental-behavioral pediatrician and educator are reporting high levels of stress as they attempt to make up for missed services. While all parents are trying to manage, parents of kids with special educational needs also worry about their children losing critical gains they worked so hard to achieve.

It is important for parents to know that, even in the midst of a pandemic, they are supported and their children have educational rights. And it is imperative that school systems involve parents in planning for children’s educational and therapy needs—now, as this pandemic continues or resurges, and as schools and society reopen.

Children with special needs are eligible for educational and therapeutic services through the federal Individuals with Disabilities Education Act (IDEA)—qualifying children through age 21 can receive supports such as special education, or speech/language, occupational or physical therapies. Importantly, the Department of Education did not seek to waive IDEA provisions in the midst of this pandemic, so the regulation still applies. As schools seek to address student needs during this time, we offer the following considerations for supporting families of children with special educational needs:

• The special education team should consult with families regarding plans to meet children’s educational needs now. As the academic year ends, schools can expand access to extended school-year services, as many more children than anticipated may demonstrate qualifying loss of skills since the pandemic began. Even if administered virtually, extended school-year services can provide structure and attention that children thrive on.
• Children with special educational needs should receive periodic assessments to guide the process of developing an individualized education plan (IEP) under IDEA. For many children these assessments have appropriately been postponed in the midst of this pandemic for safety reasons, and because alternative virtual assessments may not be effective. Schools should anticipate a backlog for conducting this psychoeducational testing. In the interim, schools should be flexible about addressing a child’s needs, including implementing a child’s prior IEP or accepting outside evaluations.
• Additionally, children who have missed therapies as a result of the pandemic can be eligible for compensatory education services. Missed hours can be made up in the future. If a child has lost skills, they may also qualify for additional compensatory education services to help them catch up to where they would have been if they received consistent services. Education teams should systematically discuss each child’s needs for compensatory education with families to develop a plan for these services.
• While the needs of children with disabilities are significant, in part because children with significant disabilities may be unable to effectively participate in virtual instruction, schools must also consider the need of all students and recognize that even children without an identified disability may require more intensive support as they return to school. For example, children from low-income families who may not have required technology, or children from families in which parents are working and unable to consistently support their children’s participation in home-based schooling may disproportionately suffer from the time out of the classroom. When planning to reopen, schools should consider assessing the current levels of all students to appropriately place them into the grade and class consistent with their achievement.
• School systems, teachers and health care providers should be alerted to elevated stress levels for caregivers, and should be responsive to their needs. Programs that provide therapies, including behavioral supports for children with autism spectrum disorder or other behavioral needs, can offer virtual consultations to help families implement strategies while at home. As Pennsylvania counties transition to the yellow and green zones, behavioral health agencies may be permitted to provide more in-person services, especially for children with dangerous or disruptive behaviors.
• Lastly, looking ahead to the next school year when there will likely be periods of onsite and virtual learning, schools should prioritize planning for continuity of school health services, including speech therapy, mental health and counseling services and other school-based therapies.

Of course, putting these ideas into action will take funding. Perhaps it is finally time to fully fund IDEA, a promise that remains unfulfilled. As Congress considers additional rounds of relief funding, putting students’ needs at the center is critical.

While we know that these suggestions will not fully assuage parents’ anxiety about providing therapeutic and educational support during COVID-19 closures, options do exist for families to continue to promote developmental gains, and schools can help develop those plans. 

Tamla T. Lee, MA, MAT, is a certified Special Education Teacher and Applied Behavior Analysis therapist and PhD candidate. She currently works as the Upward Bound Coordinator at Temple University.