COVID: One Year Later
Anniversaries are typically something to celebrate. Whether it’s the date of your wedding, or how long you’ve worked for the same company, important life milestones are an opportunity to acknowledge how much has happened since the previous year, both good and bad. Certainly this past year has come with many, many challenges, but I would argue we still need to celebrate the one-year anniversary of “the day everything changed” in March of 2020. And I say that because despite it all: we're still standing.
The Arc of New Jersey is built on a mission of representing people with intellectual and developmental disabilities and their families and advocating on their behalf so they can lead the fullest lives possible. The pandemic took us out of our comfort zone in so many ways, but we didn’t walk away from our responsibilities or from the people we serve. Instead, we found different, creative and at times challenging, new ways of doing what we’ve always done. Putting the best interests of people with I/DD at the forefront of everything we do.
In March, The Arc of New Jersey became experts in technology. Learning how to be just as effective working remotely as at the office, but also helping individuals with I/DD and their families access supports and services through the computer. Whether it was virtual day programs, online support groups, meeting via Zoom to complete state assessments for services, participating in virtual court hearings or supporting workers with I/DD working from home, our learning curve started there and it only grew.
Next we were introduced to new acronyms like PPE and we became much more familiar with the CDC web site and any and all specific guidance related to people with developmental disabilities. We delved into the issue of “rationing of care” and fought back against it, and we advocated for hospitals to allow people with I/DD to be allowed a support person. Whereas before the pandemic we focused mostly on disability services and how individuals and families could access them, now we started to greatly expand that knowledge base to better meet the needs of those contacting us for help. That meant learning about eviction and utility turnoff moratoriums, how to get free Internet, where to find PPE. It meant staff delved deeper into the worlds of Medicaid and Social Security to make sure individuals who received stimulus payments wouldn’t lose benefits and helped to ensure no one lost access to entitlement programs while the public health crisis raged on. We became relentless advocates when it came to equitable distribution and access to vaccines for people with I/DD and worked to ensure those most vulnerable to the threat of COVID were prioritized during this complex process. Simultaneously, we served as a resource for accurate vaccination information and we distributed information in a variety of easy-to-understand ways so people could consider all the facts when it came to getting a shot.
With schools closed, students receiving special education services and their families reached out in a big way for help and guidance. When the hands-on approach children receive in the classroom wasn’t translating through the computer screen and services in the Individualized Education Plan weren’t always being met, we were there. For those with technology gaps, we fought to get them connected. We advocated for in-person therapies where appropriate and we helped families navigate the process for obtaining compensatory services. We attended virtual IEP meetings with families and in the Legislature, we advocated for students to continue in school past the age of 21 to make up for all of this year’s learning loss. For students planning their transition out of school, we created online classrooms and provided resources, materials and videos that students and their families could access from home. And for young children receiving early intervention services because of developmental delays, we worked with policy makers on safe, in-home guidance and ways to conduct telehealth visits with practitioners.
And every day throughout the crisis, we were in contact with policy makers on all levels about regulations and guidance to protect served individuals and about getting our local county Chapters the help they needed to be our boots on the ground. While Chapters supported people at home while day programs remained closed, we worked with decision-makers to help determine when they could re-open and to reimagine what they would need to look like when they did. We made sure providers had the extra funding they needed to properly support residents staying home and that monies were there for day programs until they could safely re-open. We worked to balance the rightful desire of families to visit loved ones they desperately missed throughout the COVID crisis with the need to protect the health and safety of both residents and our dedicated Direct Support Professionals. For them, our DSP Heroes, we successfully secured temporarily higher wages in recognition of all the personal risk they took on while assisting people with I/DD.
And as legislation and budgets were proposed and prepared, both on the state level and federally, The Arc of New Jersey was a constant and consistent voice. We weighed in on more than 50 pieces of legislation as they moved through the Senate and the Assembly this past year, delivering testimony remotely and meeting with legislators through Zoom. We reached out to New Jersey’s Congressional delegation on everything from COVID relief legislation to Electronic Visit Verification, the need for PPE and more.
So as we mark the one-year anniversary since COVID changed everything we knew, at The Arc of New Jersey we are going to celebrate. We will celebrate all we accomplished and the feats we overcame for individuals with intellectual and developmental disabilities and their families. We will celebrate because we stand stronger today. We will celebrate because we are ready for brighter days ahead.