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Creating Meaning in Our Days

three people potting plants

On any given pre-COVID week day, Laurie would be sitting down at her loom at Woodmont Weavers, creating beautiful works of art. Kelly would be in the kitchen helping with meal set up at the daycare where she works. And now? They are at home, like everyone at L’Arche GWDC. 

On Friday March 13th, day programs and supported employment programs in the DC and Virginia area closed because of COVID-19. Day programs are a place where adults with Intellectual and Developmental Disabilities (IDD) can enjoy planned activities and spend time with friends.This was a significant loss for our core family members. Today, around nine months later, day programs and supported employment programs still remain closed.

Core family members ask just about everyday when they will be able to go back to work or to their day programs, and we still don’t have an answer. 

For a lot of people with disabilities, day programs provide structure and a community outside of our homes–they connect core members with purposeful activities and expand their social circles. Typical days for our core members who attend day programs consist of outings to restaurants or community gardens, music and dance classes, as well as numerous opportunities to build friendships and learn new skills. Core family members who participate in employment programs contribute meaningfully to their places of work, such as Laurie and Kelly, but also Eileen and Debora making art at Art Enables or Fritz (before he retired) washing vehicles for Arlington County. When I talked to Eric today, he said, “I miss work. I haven’t seen work in a while. I don’t know when we’re going back.”  These opportunities have been paused indefinitely.

Day programming has been shown to positively impact people with Intellectual and Developmental Disabilities (IDD). Past research indicates that people with IDD prefer day program settings to spending the day at home or in other more institutional settings. At day programs, people with IDD report having more opportunities for meaningful inclusion and a greater sense of choice and self-determination . Community-based day programs, which many of our core family members attend, place special emphasis on engaging people with IDD in the broader community and building friendships. People with IDD who attend these programs report feeling a greater sense of belonging and sometimes even report a better quality of life.

In 2018, I conducted a research project with core members to discover more about day programming. In particular, I was interested in learning what was most engaging for core family members in order to help providers continue planning meaningful daily activities. Core members and I worked together to see how day programming affected their mood and behavior. From my research, there were two very clear findings: what was most meaningful were social interactions with friends outside of L’Arche and outings. The two things that are so tricky during COVID.

With the loss of day programming for our core family members, L’Arche was met with a growing need to provide a meaningful and COVID-safe alternative during the day. Overnight, we became a 24-hour care provider. L’Arche GWDC is not structured for day programming, and our homes do not necessarily receive additional funding to provide daytime support. This was (and still is) a particular challenge for our community: we know core members need meaningful day activities, but we didn’t necessarily have access to the resources and structures of day programs.  Given my interest in day programming, I asked to be a part of whatever solution was feasible for meeting this newly encountered need in our Virginia homes. With the help of Maggie and Lauren (leaders in the Virginia community), the idea for activity day came together. Essentially, it was what I had always dreamed of: the opportunity to create day programming with people with disabilities.

Highland House core family members and I decided to plan an outing and a house activity every Tuesday in what became known as “Activity day.”  First, I sat down with each core family member and did a preference assessment. We went through pictures of various COVID-approved activities, like hiking, having a picnic, and going on a drive. We sorted each picture into a pile of activities each core family member would like to do, and activities they were not so interested in. From there, activity day became focused on scheduling and researching. I looked into the COVID guidelines of different outdoor venues, researched the most popular time to visit, and made sure to plan around that time of day. I made photo schedules of the plan for the day for each core member to reference. Then, on the following Tuesday, we had our inaugural Activity Day.

On our first outing, we went to the Bon Air Park Rose Garden in Arlington. Fritz loves flowers, so we planned our day around finding different kinds of flowers in the park through a scavenger hunt. In the afternoon, Eric and Kelly spent time playing soccer and basketball at a local park. Meanwhile, Hazel and Fritz played memory games and discovered new apps on the house iPad. After our first activity day, we took some time to talk about how it went and get feedback from core members and assistants. I heard from core members that they wanted more outings, and so together, we found new places to explore while staying safe. 

Our next challenge was tackling how to connect with friends outside of our homes in the midst of a global pandemic. We hosted a drive-by costume party on the Tuesday before Halloween. We caught up with old friends while dancing to the Monster Mash in our driveway. We’re still brainstorming more ways for core members to grow friendships outside of the home on activity days, and we’d love to connect with members of our wider community who have ideas!

To me, activity days exhibit one of the very best things about L’Arche: aiming for a higher standard of engagement and quality of life than what is expected for a residential service provider. L’Arche does not receive extra funding to plan activity days. L’Arche also does not have day program directors to aid in establishing activities. However, because we believe in mutual relationships and in building communities where core members are firmly rooted in the center of daily life, L’Arche adjusts to the needs of core family members. We listen to the loss they have experienced due to the pandemic, and we find a way to respond. We pivot to provide what we need for our core members to lead us and thrive, to the greatest extent possible. 

Another great thing about L’Arche is that while we aim high, we recognize our limits. As much as I, and L’Arche, would love to plan five activity days a week, we know that we do not have the resources to do this. We know that we cannot replace the important work of day programs and places of employment, and so we state our limits and work from within them. 

Activity days continue evolving to fit the needs of our members. We continue looking for places to visit and people to reconnect with distantly. We also look ahead to the challenges that come with colder weather and rising COVID cases in our nation. Despite the unknowns, we will continue responding to the changing needs of our homes, community, and core members.

Activity days have provided an additional opportunity to go out as a home and show others in our community how to be together safely in the midst of a pandemic. Global pandemic or not, we strive to be a sign of hope and a community that responds to changing needs. 

 After Eric mentioned he missed work, we started talking about activity day, and he said “Remember when we went kayaking? And to the pumpkin patch? Where are we going next?” On a zoom call a few weeks ago, I watched Hazel hold up her photo schedule to the screen, showing a friend the picture of a dog that represented visiting a dog park on activity day. She smiled and said “Me! Hazel! Go! A Dog!” 

It might not be the same as a pre-COVID day program, but, activity day is valuable to our core members, and therefore, it is valuable to L’Arche. 

 

Woman in witch hat holding a pumpkin and smiling
Kelly holding her pumpkin during a halloween activity.
Four images and coordinating text with the times of the activities
Accessible preference assessments were created for core members.
Fritz at Bon Air Park Rose Garden
Fritz at Bon Air Park Rose Garden!
two women picking berries
Alice and Hazel picking berries during an activity day.
Person in hat holds a berry in his hand
Eric berry picking.
Highland House on a tractor ride!
Highland House on a tractor ride!

Featured photo: Hazel, Liddy and Fritz potting plants during an activity day.

Article edited by Lauren Palmer.

 

Blick, R. N., Litz, K. S., Thornhill, M. G., & Goreczny, A. J. (2016). Do inclusive work environments matter? Effects of community-integrated employment on quality of life for individuals with intellectual disabilities. Research in developmental disabilities, 53, 358-366.

 

1. Blick, R. N., Litz, K. S., Thornhill, M. G., & Goreczny, A. J., 2016, p. 362

2.  Blick et al, 2016, p. 359

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