Parents of Students with Disabilities - Unsung Pandemic Heroes
After 9/11, we celebrated first responders who rushed into danger to help others. In recent years, it has become customary to thank military members for their service. The COVID-19 pandemic has raised a new class of heroes rightly receiving recognition for their courage and care – health care workers, medical researchers, delivery people, and – of course – teachers, therapists, and school leaders.
I’d like to propose another class of heroes. Parents of students with disabilities.
Many families experience a child with special needs as a grace and blessing. However, raising a child with a disability is an extraordinary challenge even when the rest of your life (and the world) is otherwise “ordinary.” Extended school closures have placed students with disabilities at significant risk and increased the burden on their parents, who must now - more than ever - be parent, teacher, therapist, and advocate.
So while we rightly cheer nurses, celebrate scientists, and applaud teachers, let’s remember the dad struggling with a child who can’t participate in Zoom class because of anxiety or ADHD. The mom who wonders what to do with a stack of school worksheets that arrived home the same day she lost her job. The family watching a child regress as the days turn to weeks turn to months.
We need to celebrate parents of students with disabilities. And we need to support them. How can special education law help? Here are three (3) observations and some suggestions.
Parents Were Always Supposed to be Part of the School Team.
The word “parent” (or some version of it) appears over 1,000 times in IDEA (the main federal special education law) and its regulations.
When Congress reauthorized IDEA in 2004, it expressed frustration that the law (originally enacted in 1975) had not been more successful in improving outcomes for students with disabilities.
Part of the problem, Congress said, was that not enough attention had been paid to 30 years of research and experience showing that educational outcomes are improved by “strengthening the role and responsibility of parents and ensuring that families … have meaningful opportunities to participate in the education of their children at school and at home.” Congress committed to providing parents the “necessary tools” to participate in their child’s education.
Parental participation and procedural safeguards to protect parental rights are considered two of the foundational pillars of special education law. Parents are entitled to meaningful participation in the development of their child’s educational program and placement. Schools break the law when they “pre-determine” important issues without asking for, and carefully considering, the parents’ perspective.
Parents Are Experts Too.
School professionals undoubtedly have important insight when developing an educational program, informed by their training, experience, and observations of the student in school settings. However, it's a mistake to consider school employees the exclusive experts, possessing all knowledge necessary for assessing a student’s abilities and needs.
The law recognizes parents as a “child-specific expert,” who is “uniquely situated to provide a global understanding of the child’s abilities,” and “report on a child's progress in ways a teacher cannot.” G.B. v. Tuxedo Union Free Sch. Dist., 751 F. Supp. 2d 552, 579 (S.D.N.Y. 2010).
Mom may not have an education degree, but she was her child’s first teacher. Dad probably isn’t a psychologist, but he can share lots of observational data on the student’s strengths, abilities, and challenges across a variety of settings. The parents aren’t behavior analysts by trade, but they probably know what behavior strategies work– and they definitely know which strategies do not!
Special Education Happens at Home.
Special education was never supposed to stop at the schoolhouse door.
IDEA guarantees special education services to students and to those working on behalf of the student. This includes giving parents resources to understand their child’s special needs and “acquire the necessary skills” to support the child’s education.
The special education law and regulations emphasize the importance of home-school communication and provide for parental empowerment through counseling and training. These requirements are based on decades of research correlating improved outcomes with consistency and cooperation between home and school.
In other words, even before the pandemic, the law required an education plan that considered the student’s needs at home and provided parents with resources necessary to play an important role in education.
The current crisis highlights and heightens pre-existing realities and requirements of special education law. Parents are an essential part of the child’s school team. They have insight that needs to be heard and heeded. A special education program needs to include services that support the parents and considers them an important part of the school team.
Some suggestions for schools in the age of distance learning:
(1) Consider the parent’s needs, as well as the student’s. If the student needs support to attend to a Zoom conference or complete a project, does the parent have the resources (technology, training, time) needed to provide that support? If not, then a free appropriate public education requires consideration of the parent’s needs and demands that we find creative ways to address them. (Support from the IT department, school psychologist/social worker, and/or an outside consultant may be necessary).
(2) Consider the educational environment when designing instruction. Planning should account for the student’s setting, which in this case will differ significantly from the classroom. Lessons that incorporate multiple modalities and encourage engagement, always important, have become essential. (A pile of unmodified worksheets is likely neither "appropriate" nor an "education").
(3) Appreciate the parent’s perspective. An absent or disengaged student could be caused by an inattentive parent. But more likely, it is the result of a parent who lacks the bandwidth (personal and/or technological) needed to meet the student’s needs and/or is struggling with some combination of personal challenges, work/financial stress, or other family complications. Again, consider the involvement of your school social worker, local parent support groups, and other internal and community resources.
Some suggestions for parents:
(1) Communicate your needs and abilities honestly and often. The school can’t support you if they don’t know what you need (or if they think you can do everything).
(2) Assert your rights. The law recognizes you as an integral part of this process and entitles you to the support you need to be a meaningful partner. Insist on the resources you need – whether that’s technology, training, or time. Consider contacting an advocate or attorney if the school is not responsive.
(3) Remember self-care. When the oxygen mask deploys on the airplane, you need to put your mask on before helping the person next to you. You can’t be an effective parent, or person, if you can’t breathe. So whether it’s a spiritual practice or the practice of consuming “spirits” – attend to self-care, respect your limits, be realistic with your schedule, and remain mindful of the long-term.
And appreciate yourself for being the pandemic hero you are.