Frontline Initiative: DSPs Respond to COVID-19

We had been thinking about what would come next in Will’s life after he graduated from high school. Like many of us who have a child who receives supports, we thought that after he graduated, his only options were either going to a day program or working in a traditional job. We looked at day programs and quickly realized that Will wouldn’t flourish there. Will lives at home with us on the farm in New Jersey. In this rural community, there aren’t many employment options. He tried a few jobs, and like a lot of people who are just starting out, they weren’t the best fit. We all know that when a job isn’t a good fit, it usually causes stress. This was the case with Will. He is a joy-filled, easy-going guy and having a job that wasn’t a good fit was really hard on him.

In 2019, he was working a couple of jobs that slowed down in winter. This slowdown got me thinking about helping him find something that he would enjoy and that was meaningful to him. Will has Down syndrome, and he receives support from direct support professionals (DSPs). Before the COVID-19 pandemic, he had support from three DSPs. I was also his DSP and filled in occasionally when his other DSPs weren’t available. I started a conversation with Will and his other DSPs about what he enjoyed and what was important to him. One thing that he really cares about is health. This is where the idea of Will's Ware began. We worked together to help him start his own business.

Will’s Wares gives to the community

Will’s Wares began by making elderberry syrup, bath salts, and hand soap. With Will’s love of animals, he also made grain-free treats for dogs and horses. Then, just before Valentine’s Day in 2020, we decided to make hand sanitizer. We purchased gallons of rubbing alcohol, a key ingredient in hand sanitizer. We didn’t realize when we bought it that a world-wide pandemic was just around the corner. Of course, after the start of the pandemic, hand sanitizer and its ingredients were in high demand. When the pandemic started, the service provider eliminated the positions of all three of Will’s DSPs. With them no longer able to support Will, I became his full-time DSP.

When the pandemic started, the service provider eliminated the positions of all three of Will’s DSPs. With them no longer able to support Will, I became his full-time DSP.

Will thrived as he and I worked together to continue Will’s Wares from the farm. At first, we sold the hand sanitizer. Then, together we decided this was an opportunity to do something good for the community. Will’s Wares donated hand sanitizer to two hospitals, nursing homes, doctors’ offices, and a pharmacy. They were thrilled to receive the hand sanitizer. This was a great lesson for Will about giving to our community. He thought it was really great when he received letters of thanks from their CEOs.

Will prefers to stay home on the farm and spend time with my husband and me, and of course, the dogs, so the isolation that the pandemic brought didn’t really bother him. He loves using technology; he is better with it than I am. The pandemic got him started doing more things virtually. Will began to connect with others in a way that he would not have done before the pandemic. He started taking a college class and he meets with an online tutor. He also started attending music and fitness classes online. He connected with a group of people who also have Down syndrome from Park Ridge, Illinois. He likes being the “Jersey Boy” in the group!

What’s important from Will’s DSPs

I really was happy to support Will as his full-time DSP, but I was also happy when we could hire back one of his DSPs after vaccines became available to more people. Getting vaccinated was really important to me. Our family got our vaccinations in January of 2021. I have many roles as Will’s mom, his DSP, and the person who manages his support budget. In that role, I am responsible to find and select the other DSPs who provide support to Will. It is important to us that Will’s DSPs are vaccinated against COVID-19. When I am getting to know the people who are interested in working as Will’s DSP, I invite the top candidate to our home and we talk over the kitchen table. This face-to-face conversation is important for me to learn about their philosophy on COVID-19 vaccinations and other important values. Through this process, both the candidate and I can decide if they will be a good fit for supporting Will. Will is always part of the conversation and weighs in on the hiring decisions.

This face-to-face conversation is important for me to learn about their philosophy on COVID-19 vaccinations and other important values. 

 When restaurants, stores, and other businesses started to reopen during the spring and summer of 2021, it meant that we could start going out again. Tanya Ammerman, who was one of Will’s DSPs before the pandemic, was able to return to work with Will after she was vaccinated. She supports him when he goes to the gym, shopping, bowling, and to do other things around town. Like many people, it was a little scary for Will to start going out again, knowing the pandemic was not over. I taught Will about good safety practices: handwashing, wearing a mask, and social distancing. We also wanted to help Will find something else to do for work—something that he could do alongside Will’s Wares that would be low-risk from the virus. We reached out to some places in our local community and found an opportunity for him to walk a woman’s service dog. Word spread. Now he provides dog-walking services for three families. Although Tanya has returned to support Will, I continue to be his DSP, too. I always say, “clear communication between Tanya and me is critical for us to work collaboratively to support Will. The key to making it all work is being flexible and being able to adapt to the ever-changing world.”