Op-Ed: Do Not Forget About People With Disabilities

This op-ed was submitted by Rikki Epstein, the executive director of The Arc of Northern Virginia in Merrifield. It does not reflect the opinions of Tysons Reporter. We publish op-eds and letters to the editor of specific interest to the Tysons community. Contributions may be edited for length or content. 

Since Gov. Ralph Northam issued the COVID-19 stay-at-home order for Virginia, I’ve been reaching out to families and individuals we serve. I wanted to check in, ask how they’re doing, and reassure them that The Arc of Northern Virginia’s services would continue.

Many wrote back, sharing what this “new normal” is like for their household. Some even asked about other families. With every note I read, I am reminded of the genuine honor it is to serve those with intellectual and developmental disabilities on behalf of our amazing organization.

I lay awake in bed at night thinking (because that’s what we all do now) about two sentiments that are common among many of the notes I’ve received. Nearly every family is struggling to find alternatives to necessary, often critical, support services. With a loved-one with an intellectual or developmental disability, life in normal times is a precarious balance. The disability alone robs one of the stability many of us take for granted.

It’s like a game of Jenga, with many of the pieces missing to begin with. But this is no game. Life depends on that tower not falling over, and each wooden piece represents a critical support service. As long as the supports are in place, there’s fragile stability. Now, start removing those supports.

Take away the piece that represents personal care attendants in the home, and you leave the work of caring for a family member with serious needs solely with the parents, 24 hours a day, 7 days a week. Parents are literally sleeping in shifts through the night.

Take away the piece that represents stable housing, and you have a family moving out of their apartment to protect their immuno-compromised child, saying “Elevators are terrifying repositories for anything picked up by the 896 other residents.”

Take away the piece that represents structured education and you have distance learning plans from some school districts that have been delayed or — worse yet — non-existent for students with disabilities.

Take away the piece that represents physical therapy.

Take away the piece that represents job coaching.

Take away the piece that represents speech therapy.

Take away the piece that represents occupational therapy.

Get the picture?

For many of these families, The Arc of Northern Virginia can help them put back some of those pieces. We can locate the resources that help restore a feeling of balance for families in need. It may be precarious. It may be temporary, but it keeps the house from falling down.

The second sentiment I heard in those notes is what finally allows me to sleep at night. It’s a sense of hope. A sense of optimism borne out of the experience of facing previous tragedies and coming through them stronger and more resilient.

“We’ll get through this” was said over and over again. And in my heart, I know we will. Because we’re in this together, and we draw strength from each other.

In this time of crisis, in this time of heightened anxiety, in this time of hardships for everyone, please don’t forget those who live with hardship and anxiety nearly every day, and yet persevere. It is essential that we keep families together, programs running, and critically-needed services in place for our most vulnerable population.

We need to make sure EVERY MEMBER of our community makes it through this crisis.

Photo via Arc of Northern Virginia/Facebook