The Heroes Amongst Us: The Caretakers Stepping Up and Showing Up During COVID-19
Updated: Oct 8, 2020
Every day before she leaves for work, Julie Tracy knows in the back of her mind, that there is a pandemic that has significantly altered the landscape of the world. Her staff has been out sick, first a small trickle, then almost a constant stream of are reliable employees. Each time she receives a call, text or email from a staff member, her heart sinks and her body races into action.
Julie’s story though takes a twist, she is the President of A+ Autism Solutions, a Community Integrated Living Facility for six full-time residents spanning two Chicago-based homes. Her young adult clients have autism or related conditions as well as comorbid conditions such as anxiety, depression and OCD, some of whom still go to work at the grocery stores (which only heightens anxiety within their community). She is one of many providers throughout the country and around the world that the “Shelter In Place” order is not applicable to, as Julie and her team of fearless employees are deemed, essential workers. Each team member plays a critical role in the operation of the 24/7 housing they run, which provides well beyond the basics of food and shelter. For these six individuals, this is home.
Julie’s story and that of her dedicated team who are literally walking into battle every day are comforted to know that there are others like them across the country, but feelings of isolation and struggle to adjust her clients to a new schedule while juggling their mental health is overwhelming even for the most seasoned professional. Julie knows her team is burning out and that each and every one of her team members worries about whatever germs they are passing on to their loved ones at home. They are also aware that one of the biggest strains the clients of A+ Autism Solutions face is a shared feeling; the consistency in schedules, working, volunteering, visiting with family and participating in everyday living or social events is a routine they long to return to, as a person. Particularly for an individual who has autism, consistency and routine are crucial, and an abrupt shift can cause a heightened level of stress and anxiety.
David Royko, a licensed clinical psychologist and author of Juggling Autism and The Chronicles of Ben: Adventures with Autism, which highlights the lived experiences of his son's severe autism, knows what it means to be a parent of a young adult with autism during this unsettling time. Currently, his son Ben, 26, is under the care of a Community Integrated Living Facility for young adults with autism. David explains that this period of COVID-19 can be emotionally, psychologically, and physically damaging for people with autism and their caregivers. "Together, they represent many thousands of people trapped with a hellish, vicious, heartless, unrelenting monster," says David.
Julie and her team know this too well and monitor daily the stress that their clients are facing.
Julie's company, A+ Autism Solutions, partners with Urban Autism Solutions which provides, among other services, social and programming opportunities that foster meaningful routines to clients and residents alike. Clients follow a person-centered plan that revolves around goals, interests, and helps to navigate personal barriers. Much of the day-to-day activities are community-oriented and allow residents to meet others and explore the city of Chicago. With the stay-at-home order in place, the team of A+ Autism Solutions has had to swiftly develop a plan of action to keep residents engaged and sound of mind and body. Program Manager, Christina Hovatter says, “Right now we are taking it week by week, working to find new opportunities and developing new programs for our residents. We are focusing on keeping both the mind and body strong and recognize how challenging this is for our clients.”
Like so many residential facilities right now, Julie, explains that clients and caretakers are in an incredibly fragile state physically and emotionally. Yet, she and her team have managed to curate a resident life that feels as normal as possible given the circumstances; clients can virtually connect with psychiatrists, partake in guided exercises, indulge in Netflix binges, and prepare meals as a residential family. She is incredibly grateful to her team for stepping up and showing up every day and managing not only the residents but also all of the cleaning that takes place every single day, several times a day. Of course, the pandemic has certainly introduced several complex challenges that Julie and her team never thought they'd "face in a million years." "There's a sense of responsibility, fear, and uncertainty," explains Julie, "It's unsettling not knowing what could happen to the clients' health, let alone your own health."
Julie suggests there are ways others can help caretakers from any organization during this time. Have a meal for the staff and residents delivered, have games and puzzles sent for everyone to play together, drop off extra goods such as toilet paper, gloves, and cleaning supplies. Talk to your young adult to remind them that the world will heal and get better. Acknowledge the stress and strain and great risk and sacrifice the staff is making all in an effort to provide the services your young adult needs.
Even for a task that seems so minuscule such as dropping off a meal, Mhel Woo, Operations Manage at A+ Autism Solutions, emphasizes that this gracious, and much-needed gesture provides not only physical but emotional support, "It shows you didn't forget us. You care for us. You acknowledged that we're here. We aren't arguing. We are a team, no matter what."