2024-06-13 7:15 AM

Guest Commentary: Crisis has Made Precariously-Balanced Lives More Unstable

By Rikki Epstein

Since Governor 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.

Much of our work during this crisis has been dedicated to finding the right person or agency, asking the questions our families have, and getting the answers. Here are just a few of the situations where The Arc of Northern Virginia has been able to assist a family in need:

• Assisted a family in determining how they could proceed with asking to have a parent present if their daughter is admitted to the hospital with Covid-19.

• Supported a family in finding the new policies on visitations for their loved one residing in a group home under Covid-19 protections.

• Showed a family the new rules allowing caregivers to receive unemployment benefits without being laid off if the pandemic is preventing them from going to work.

• Gave information to enable a family so they could request and receive additional nursing support hours as a result of having a child home from school suddenly.

• Helped a family whose Medicaid application for their daughter was repeatedly denied figure out why, gave information on how to re-submit, and who to talk to in order to resolve the issue.

While much of the world is focused on the current crisis, we cannot forget that there will be life after the crisis. The mission of The Arc of Northern Virginia will always be the commitment to creating opportunities for people with intellectual and developmental disabilities to live inclusive and meaningful lives — not just in times of crisis — but for their whole lives.

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.

Rikki Epstein is executive director of The Arc of Northern Virginia.





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