ALL DOES NOT MEAN ALL

BY ERIN CROYLE

All does not mean all. Anyone with a disability knows that. This pandemic is magnifying the problem tenfold.

The Centers for Disease Control hosted a live Question and Answer session this summer about factors affecting reopening schools. One person asked, "How can we keep children with disabilities safe as they return to school?" John T. Brooks, MD, who serves as a medical epidemiologist for the CDC, said students with underlying risks have choices. One: keep them engaged, but safe. Educate them remotely from home. But he acknowledged that not everyone has the privilege of access. Two: If a child really needs to be in a structured setting, it should be set up so it limits their chances of being exposed; maintain higher disinfection levels and screen for symptoms before entering. Those working with these students must maintain a high level of sanitation and handwashing. Caregivers at school should limit their contact as much as possible, he concluded.

Erin Sauber-Schatz, PhD, MPH leads the CDC's Division of Injury Prevention. When Dr. Brooks turned it to her she added, "That is actually more information than we have on our website."

Let that sink in.

That basic advice, which any parent of a child with a disability could tell you, was not only all that the CDC had to offer, but it wasn't even provided in their official guidelines. People with disabilities, left behind yet again. Two of my colleagues who advocate for individuals with disabilities and their families were also participating, looking for guidance on decision-making for themselves and others. They found the CDC offered "absolutely nothing" to help them. Disability rights advocate Kymberly Deloatche, who has a teenager with complex medical needs, said, "It's almost like our kids don't exist in their deliberations."

The American Academy of Pediatrics (AAP) released reopening recommendations with a bit more attention to students with IEPs (Individualized Education Program). They recognize how detrimental the loss of instructional time and related services can be for students with disabilities. The AAP stated:

"Students receiving special education services may be more negatively affected by distance-learning and may be disproportionately impacted by interruptions in regular education. It may not be feasible, depending on the needs of the individual child and adolescent, to adhere both to distancing guidelines and the criteria outlined in a specific IEP. Attempts to meet physical distancing guidelines should meet the needs of the individual child and may require creative solutions, often on a case-by-case basis."

While the AAP did better than the CDC, it simplified what families and schools are facing when keeping children with disabilities both healthy and educated. There are so many more questions we face:

• How do we support high risk students learning?

• How do we engage students with disabilities in distance learning?

• How do we make sure materials are modified?

• How do we support caregivers who are now serving as teaching assistants?

• Do we keep the siblings of high-risk children at home?

• Where is the emotional support for families in long-term isolation?

• How do we support friendships and engagement for students with disabilities?

• How do we educate school nurses about the unique risks students with disabilities face?

• How do we manage the inequities of long-term isolation because our families must be at a higher level of quarantine?

• How do we explain to our children why their friends and peers can go to the pool/playground/park and we cannot?

• How do we convince others to do their part in containing COVID-19 so we can ALL reenter society?

WHAT DO WE DO?

We are going to do what we always do. We will unite as a community. We will lean on and collaborate with disability groups such as our local Family-to-Family organizations, The Arc, Family Voices, and others, to decide what is best for individuals with disabilities. We will contact our children's specialists and talk to them about the safest options for our families. We will work with our schools and communities and WE WILL EDUCATE THEM about what our children need to learn to be safe. Some ideas for the fall: 

• We are already masters at adaptation and modification – utilize those skills. We need to apply these skills to the pandemic, and think outside the box.

• Advocate for what is best for our families. Reach out to others at your school or in your school district in similar situations. Provide an outline of your needs. Offer suggestions. This can be through phone calls or email; contacting the special education department, principal, or superintendent. Consider a virtual presentation at a school board meeting, partnering with a local special education, or disability organization.

• Collaborate with your school. Education as we've known it for decades will not exist this fall, whether it's distance learning or inperson. We need to work together to help students with IEPs learn. Can teaching assistants provide support to students in their home? Can aids help teachers facilitate adapted lessons virtually? How can students participate in virtual classrooms in a meaningful, inclusive way? This will look different for every class, and we will need to put effort into doing it well.

• Technology is our friend. Utilize it. Reach out to your school to see how they can help.

• Insist on appropriate services. The Individuals with Disabilities Education Act (IDEA) still applies. All students are entitled to a Free and Appropriate Public Education (FAPE). Schools are required to provide them.

• Be flexible. At the same time, we insist on services, we must also be understanding of what teachers and therapists are up against. They are juggling work and family just as we are. They are scared and nervous about COVID19 too. They are reimagining their job on the fly, teaching in a new way with very little training or planning time. Summer break is just that, a break. Even for those who are doing professional development, we're looking at just a couple of months to revamp how we've done things for YEARS. Parents and teachers will need to be patient with each other, and the children. 

• Consider a cohort. We've probably all heard of podding by now. Finding a family or two who is at the same level of lockdown as you are and latching on to them. This could be especially helpful in the fall. Families could rotate teaching duties and exchange respite care. For it to work, everyone involved must be completely honest and transparent about their whereabouts.

• Identify and potentially share a respite provider. It might be possible to find someone who would be willing to work for you, and only you. This would be an employee who you know and trust who is also practicing the same level of quarantine that you are. Bonus if you can work out a way to share that provider with another family.

• Use what we're learning now to innovate for the future. Much of the innovation we're seeing right now are things that individuals with disabilities and their families have been requesting for decades. We can use distance learning to teach students on extended medical leave. We can turn to virtual IEP meetings so parents do not have to take a day off work to attend. We can encourage mask-wearing during the flu season so medically fragile children are protected. We can remind IEP teams that changing the way we have always done things is absolutely possible, and then some.

• Accept this is hard, but not compared to the alternative. See centerforfamilyinvolvementblog.org. •

GUARANTEED ACCESS: The Individuals with Disabilities Education Act (IDEA) still applies. All students are entitled to a Free and Appropriate Public Education (FAPE). Schools are required to provide them.

ABOUT THE AUTHOR:

Erin Croyle is a Communications Specialist with the Center for Family Involvement Partnership for People with Disabilities, Virginia Commonwealth University based in Richmond, VA.