Frontline Initiative: DSPs Responding to Crisis

As direct support professionals (DSPs), we have to know how to deal with crises. We deal with events that are out of the ordinary. We deal with the unexpected. But the COVID-19 pandemic has been the kind of crisis that our training had not prepared us for. We’ve been suddenly forced to improvise and find new methods of crisis management. We had to rely on technology to recreate the feeling of normality and discover new activities. Some roles were almost completely reversed. Residential staff went from strict to much more relaxed schedules, while day program staff who were used to having flexibility were creating regimented schedules. It was difficult to get started. But we’ve adapted successfully in our own unique ways.

Kelley’s story, A DSP in Pittsburgh, Pennsylvania

I’ll describe one day’s typical routine before the COVID-19 pandemic. As a DSP who works in people’s homes in Pittsburgh, it looked something like this:

Punch in. Read log. Meds - drinks - breakfast. Check and pack lunchbox. Both people I support go to each of their day programs. One person does for a half-day. Help everyone get in the van. Drop people off. Arrive at curbside pickup for grocery order. Return to their house. Put away groceries. Pick up person attending half-day. Return to their house. Have lunch together. Clean up after lunch. Get back in the van to pick up the other person who was attending full-day program. Return to their house. Unpack lunchboxes. Get snack ready. Give people their meds. Relief staff arrives. Think to self, “I haven’t even done my notes yet. Did I accomplish anything today?”

Every day was methodical and routine. Much of the day took place driving the van or doing paperwork. I occasionally played a direct support role. I wanted to know how to slow down. I wish I didn’t feel so rushed, and that I could slow down. When the COVID-19 pandemic hit, that’s exactly what I got. I learned how valuable that opportunity would be.

There’s nothing in the emergency manual about the COVID-19 pandemic. There’s no section of annual training that talks about a world crisis. When COVID-19 hit North America, none of us knew what was going to happen. Around the world people were getting sick. People were going into hoarding mode. Toilet paper disappeared from the shelves. The weekend after the pandemic was declared, I made an emergency trip to the grocery store to buy practical, non-perishable food. I didn’t want to take more than a fair share. But I also didn’t want the people I support to have nothing. I asked myself what we would need in the event that stores would close. At that point nobody knew what was going to happen. I wished I knew how long it would take for cleaning supplies, like Lysol and hand-sanitizer, to get restocked.

As we adapted to the ever-changing “normal,” it was obvious it was going to get worse before getting better. The first thing I did was remind myself that the people I support are priority. This included both mental and physical health, and everything else. I turned off the news. I told the people I support in plain terms what was going on. I explained why we were staying home all day every day. We checked our temperatures. We worked on cleaning and handwashing.

By April, I stopped thinking in terms of taking this one week at a time. I, along with DSPs across North America “suited up” with masks.  Wearing masks took away a big communicator: the face. Some wore gowns and face shields. This took away the feeling of “home.” My days changed and I learned a lot of new things at work.

I didn’t know how invaluable YouTube and iheartradio would be. I had never used Zoom or facilitated a conference call Individualized Support Plan meeting. I learned that putting a phone (mobile or landline) in a metal container makes the volume louder. We spent a day at Keystone National Park. We read about wildlife. We walked around, and we looked at the lake. In the summer, we really got into the National Hockey League playoffs. Who knew live hockey at noon on a Tuesday in August would ever be a thing? We also started a book club. The book club was just the three of us. Since then, we have read A Christmas Carol, Dr. Jekyll and Mr. Hyde, and currently The Intuitionist. We also subscribed to Audible audio books. This gave me an opportunity to listen along with the people I support. We are listening to The Iliad. We also started a “Pioneers through History” series during Black History Month.

One big things that came out of the COVID-19 pandemic has been how we have all managed to thrive. We developed a schedule that will replace attending day program moving forward. While being home, the people I support have become happier, more rested, and relaxed. There has been much more time to build relationships with one another. Before the pandemic, our bonding moments were limited to hearing a song we all liked come on the radio during the morning run. Oftentimes this was Kerosene or Take Back the Power by The Interrupters. When the stay-at-home orders started, we would watch The Interrupters music videos or concerts on YouTube. The concerts often ended with Family, which became our anthem. The chorus encompassed the bond we had formed by early summertime. This has continued to get stronger a year later:

"This is my family. My one crazy family. The ones who understand me. This is my family. Whatever the plan be, they stand beside me. This is my family."*

*The Interrupters. (2013). Family [recorded by The Interrupters, featuring Tim Armstrong.] On The Interrupters. Hellcat Records.

Matt’s story – A DSP in a Day Program in Brooklyn, New York

When our city went into lockdown due to the pandemic in late March of 2020, all day programs in the area closed. This meant I was out of work. I was effectively unemployed until June when I was offered an opportunity to use Zoom to provide remote support to the people I once supported in person.

The people I support have survived traumatic brain injuries. Any activities I lead are structured to gain and keep their attention. This can be difficult due to the nature of their injuries. Finding the right kind of activity was challenging enough to do while supporting them on site at a day program. I often used a Smartboard, an oversized computer screen that projected from my computer screen. I would use this to show mostly news articles so we could then read together. Science news was always the most popular. We read about topics we were curious about. I think this activity was effective because it demanded everyone’s attention. They were motivated to learn more. Zoom’s “share screen” feature allowed us to go right back to reading as a group. We read about the behavior of stars in remote galaxies, the properties of rare species of Arctic moss, and everything in between. For a little while each day, we feel like we are right back at our program together.

The way the pandemic was affecting the lives of the people I support was obvious from the start. They missed going out to the day program every day. They missed each other. They missed just getting out of the house. Some struggled even to find the personal space and time to take part. Some people I support live with family in crowded homes. For some, the bathroom was the only place they could manage to get a bit of privacy for our Zoom groups.

Among the people I support, I noticed a willingness, and in some cases an eagerness, to reach out to comfort and encourage one another. This was something people would do when they were together. But now it was a habit of those who might have been more reserved in person. Even on video chat they offered words of encouragement. As a result, new friendships developed. As staff, we had to adapt. But the people I support also found ways to adjust, using what might have been a hindrance as an opportunity.

We also missed the daily activities that kept us in-tune with our surroundings, socially and physically. Being confined to our homes brought on feelings of isolation and alienation. Instead we travelled virtually to locations that we might have visited in person while our program was still open. Now, using the internet, our possible destinations were multiplied. We realized we could choose to go anywhere in the country, or even around the world. Then we decided to customize a destination: our own town with all of the perfect features and conveniences each of us preferred. We packed them together into the destination. This perfect place would include a scenic mountain with an express ride to the top. It would include a diner which is always open. It would serve tofu and bacon in equally delicious ways. It would have a one-stop venue where you can shoot pool right after bowling and right before play ping-pong. Or, join in on a friendly game of cards, catch a movie, or dance to a bit of R&B/pop/hip-hop/disco/rock. Or, better yet, sing to it. And for anyone who wanted to join us, we used online software to design a brochure as a guide to this fantasy getaway. It wasn’t community integration exactly, as it was more of an escape. But we were escaping together as we were impatient to be a part of the world again.

The daily struggle to cope, to adjust to this “new normal” continues. Though my day program has begun to reopen, many still rely on remote supports. Despite all of the ways technology makes communication difficult, we have created a kind of community, a support group. It is a place for people to turn to for help and to help others get through this crisis as they have through many others, large and small.

Always learn and adapt

When we think about what we wish we had known going into all of this, it’s not something you would find in an emergency manual. We are taught about the specific steps we need to take to keep others safe and reassured. That is so important. But we learned so much more. Things are possible. It’s OK to rest. Work can be fun. Fun can be work. Home isn’t so bad. Saying, “I’m proud of you,” goes a long way. As DSPs, whether in a residential or program setting, or even virtually, it’s not about the crisis. It’s about how you adapt. Along with the people we support, we affirm the saying, “I AM ABLE.” We learned more about the people we support having gone through this. And the people we support got to know us a lot better, too. As DSPs, we’re always rewriting the manual. For us, crisis preparedness means staying on your toes. Expect to make mistakes, but always learn and adapt.