Ten months into the COVID-19 pandemic many lessons have been learned on how to live in these most challenging of times. At the same time, we should remember how quickly we adapted to these challenges. Consider how quickly we discovered how to keep in touch with the people most important to us, without physically being with them.
Close friendships have been profoundly impacted for all of us by the on-set and subsequent surges of COVID-19.
Our friends are people we choose to spend time with because we can be our relaxed selves and share in activities that we find enjoyable. Yet, friends planning to spend time together pre-pandemic would never have imagined the need to choose a restaurant in which tables are placed six feet apart for the safety of diners. Very few of us understood Zoom as a verb in reference to connecting with friends. Attending sports events or concerts with a friend are pleasant memories but are not to be scheduled at a ball field or concert hall anytime soon.
People with intellectual and developmental disabilities (I/DD) are facing the same challenges with friendships. For most of these individuals, involvement in freely-given friendships during pandemic times has varied greatly and is often dependent on the size of their living situation.
The overall general impact of the virus in the last ten months has differed in many ways. In the first few months of the pandemic, it became evident that incidence of the Coronavirus was significantly more prevalent with people living in congregate settings than those living in smaller home settings (independent apartments, shared living, foster care , or in their family home).
A study in the Disability and Health Journal concluded that the impact of the virus varies depending on where supported persons live. The study, published this past June, suggests that people with I/DD were more likely to contract the virus if they are living in congregate, group home, assisted living, or in a long- term care facility. The study, led by Scott Landes, an associate professor of sociology at Syracuse University, finds that “the setting where [individuals] live and how many people they lived with appeared to be significant predictors of risk. Among people with I/DD who are living in their own home or a family home, the case rate is lower.”
For those living in group homes, institutions and other congregate settings, however, the situation is quite different. “People with I/DD, living in congregate settings, [experience a higher] case rate related to the number of people in the type of residence. Settings with more residents have higher case rates,” Landes said.
If people living in congregate settings, have, on average, more a higher incidence of COVID-19, how has their ability to connect with friends been impacted? They are more likely to have housemates recovering from the virus or to have Direct Support Professionals working in their home who have also been personally affected.
In addition to supporting individuals in their daily needs of personal care, meals, and medical needs, Direct Support Professionals in congregate settings must implement physical distancing between the residents as much as possible, complete extra disinfecting requirements, and often times introduce extra precautions to residents who have tested positive for the Coronavirus.
These numerous job responsibilities require purposeful planning that need to include, as much as possible, time to facilitate friendships between the people they support and who they hold dear. Computer resources may not be available to all individuals. Computer resources may not be fully utilized. As a result, the challenge of physical distancing is heightening now with the addition of social distancing. Significant loneliness often ensues.
People supported in their own homes or in Shared Living arrangements have tended to have different experiences. At some point prior to the pandemic, they exercised their right to choose their residential service model. Living independently or with a Shared Living Provider, those in individualized home settings may have had less exposure to other people during the pandemic compared to people in group homes. Indeed, the numbers of positive cases has been far less than those experienced by people in congregate settings. Ed Wilson from DDS Agency with Choice recently spoke about a trend he has seen during pandemic times: “Referrals have been up 11% since March. People may be looking for services outside the less traditional. Many people are ‘narrowing their circle’ during pandemic times.”
Ed continued to explain: “The self-directed model is a tool for support in a 1:1 model; the supporter needs to be ‘intentional’ and use strategies as a skilled community connector, otherwise relationships remain with staff and/or family. People need to have a deep understanding… in facilitating and supporting relationships for success in any settings/service model.”
In a Shared Living setting, providers are expected to include the person they are supporting in daily activities in the home and that of the family. In addition, providers should support the person toward pursuing their individual interests in meaningful activities. Ideally the interests are shared intentionally with someone able to connect with the person and develop a relationship. Tom Doody, a Widening the Circle Advisory Board member, emphasizes the importance of being frank with the person being matched with the individual. “Their invitation to be in [the person’s] life is to share a piece of the outside world,” Doody said.
The same sentiment is certainly true for people living in congregate settings. Direct Support Professionals who are keenly aware of the importance of friendship find time for relationship building. They ensure individuals have opportunities to pursue interests to share with people who are most likely, in time, to develop a friendship. In smaller settings, there is a greater likelihood of the support person working successfully as an intentional bridge-builder, because they can focus single-mindedly on building relationships for one person.
A good example is a woman whose day program permanently closed. She is now enhancing her skills as an artist by attending a virtual art course conducted by a local college. Katie Driscoll, a BAMSI Director of and a Widening the Circle/Pathways Facilitator elaborates: “Her service team looked outside of human services settings to support her to pursue her passion and creative outlet. She will build upon her existing skills, valued roles and the potential for added relationships and even friendships within this new circle of students, artists and teachers”. Learning and practicing art at a segregated day hab program cannot lead to friendship between people with and without disabilities; learning and practicing art at a local college can.
Different rules have been applied by the Department of Developmental Services and provider agencies to congregate settings but not to all smaller settings. Some of these rules have more drastically limited people’s relationship opportunities. Rigid prohibitions of family and friends visiting, and even forcing some residents to quit their jobs, have severely impacted people’s lives precisely because they live in congregate settings. These extra rules may be sensible in reducing infection, but they derive from a person being assigned to a congregate setting; they do not derive from the needs of the person we support.
Due to this heightened risk of contagion, for those that reside in settings such as a group home, some people may have had to quit their jobs because that was the immediate need for safety for all within their residential programs. A loss of a valued role, such as employee, and potentially a social network of co-workers and community members could have great detrimental impact on someone’s personal well-being. On the contrary, if someone lived on their own, or more independently with family, they may have more ability to make the choice to remain employed with proper safeguards. In congregate settings, during the pandemic, as restrictions and protocols were made within agencies, many people sacrificed the ability to safeguard visits with family or friends, the ability to choose how and where to move about your community as safely as possible. And even when things have started to slowly open up, as a client in a congregate setting, you may not be able to return to your day routines, your job, or to see your family without following a strict visitation protocols, some of which may not be feasible for you or your family to carry out. Safeguards are important, but as are relationships, and more individualized settings have had the opportunity to lend themselves to a greater balance of upholding both.
It seems to reason that spending time at home, but managing to stay healthy, has been challenging in maintaining friendships, but certainly not impossible. Direct Support Professionals who are keenly aware of the importance of friendship find time to include facilitating relationship-building into their daily tasks. They think proactively and creatively as individuals’ interests develop in pursuit of meaningful activities. When COVID restrictions are lifted, these relationship-building DSPs create opportunities for individuals to meet people with whom they are more likely to form a friendship. As Jack Yates, another Widening the Circle Advisory Board member advises: “Look at who people may become while looking through the lens of relationship building.”
The Widening the Circle/Pathways definition of friendship was established years before the existence of the COVID19 pandemic. Yet, in these current times, as we re-read the definition, we especially value the line “Friends… are close even when we are apart. We look forward to being together.”
Now more than ever.
Article by Meg Gaydos.