The closure of Arizona schools in the face of the COVID-19 pandemic has created particularly severe challenges for special-needs children, whose parents rely on schools and outside therapists.
Michele Thorne, a Tempe mother of two autistic children, said single moms raising special-needs children are particularly impacted.
That’s why Thorne is giving a free one-month membership to her group’s website, damesusa.com.
“The special needs community has been severely impacted by the COVID-19 pandemic,” said Thorne, a scientist who had been working for five years at the Translational Genomics Research Institute, or TGen, until she decided she needed more time to care for her son and daughter.
“This is not an extended vacation,” she said of the closures. “This is life or death for their children.”
Thorne’s experience as a mother of special needs children – or, as she prefers to call them, “differently-abled” kids – inspired her to start an organization called DAMES, an acronym for Differently-Abled Mothers Empowerment Society.
The acronym plays off the name of an honorific title given women in Britain and some other countries.
Thorne said the indefinite school closures and decisions by many therapists to reduce or close office hours have impacted both kids and parents.
“Many of our children thrive on routines and this change in routines has been extremely difficult for them,” she said, adding her website provides tools to help them through this crisis.
“Everything we do is online or on our mobile app because special needs parents are often isolated from society,” Thorne said. “Right now, we are in a moment in time where everyone is isolated from each other. We have lost access to the self-care tools that ground us.”
Because schools “are an incredible resource for the special-needs community,” closures are making it more difficult for children on Individualized Education Plans that require “specialized instruction that we as parents don’t know how to do at home.”
School districts have been setting up mechanisms to help fill the void created by the closures but “for now, we parents are in limbo” – particularly because the school programs are virtually the only source of needed therapy services.
Families that can afford private therapy in addition to whatever a school provides also are in a lurch, Thorne said.
“We are constantly worried about regression with our children,” she explained. “Many of them are already far behind their peers. We fear that with lack of access to services, they will not only stagnate but also regress.”
Thorne herself has seen her children’s services canceled.
But it’s not just providers who are canceling, since some parents also fear for their children’s lives as the virus spreads.
“We in the special needs community are always mindful that there are those within this community that have medically fragile children and we are taking as many steps as we can to protect those who really need protecting from this virus,” she said.
Compounding those concerns is hoarding – especially of drugs.
“The biggest concern I’ve been hearing is not so much the schools or the therapies, but the access to prescription drugs and the incredible amount of hoarding that is taking place in this country,” Thorne said.
“Prescription drugs are a major concern for these families because they can often only get enough supplies for a month, and often these drugs are manufactured in China.
“With the advance of this virus, many of them are battling insurance companies to get more than a month’s worth of life-saving drugs for their children. This has and continues to be a problem for this community.”
Parents of medically fragile children “are having a difficult time finding enough supplies,” forcing them to “go to store after store looking for essentials to get them through and exposing them to more and more people.”
Thorne said she and parents like her pray for a greater sense of responsibility toward less fortunate people than they see now.
“These families are relying on others in the community to leave things on the shelf,” she said. “They are relying on people to stay home to stop the spread of this disease. They are relying on the kindness of others to help them get their child through this.”