Community Living during a pandemic

Jeff Green | Jul 29, 2020

Life is not easy for developmentally disabled adults, their families, and their caregivers, every day of every year.

Navigating around physical barriers, understanding and participating in economic and social life in a community setting, are all challenges that need to be met over and over again.

During the COVID-19 pandemic, much of those hard-earned accomplishments of (the clients of, and) agencies such as Community-Living North Frontenac and New Leaf Link have been, at best, suspended. For the people who are supported by the agencies, and their families, life in 2020 is difficult, and isolating.

Dr. Karin Steiner founded New Leaf Link (NeLL) in 2009. Filling a service gap for developmentally disabled young adults after graduating from Sydenham High School, NeLL has expanded its services over the years. It had grown to the point where it was providing 3 days a week of programming at Harrowsmith Free Methodist Church, until the COVID-19 shut-down in March.

Karin Steiner is also the mother of Nicholas Steiner, who was one of the original NeLL participants. COVID-19 has had an impact on the agency, and on her personally.

“Nicholas has been living in Kingston, in a house with other people who are supported by Community-Living Kingston,” Karin said in a telephone interview last week.

When COVID-19 hit Karin became nervous. There are caregivers providing 24 hour support in the house, and the staff had already been seeing some turnover, which increased when the pandemic hit. Karin brought Nicholas home.

“Community-Living Kingston has been understanding about my decision, and they always did a great job in the house and they have been in touch since Nicholas came home. He will be able to go back, but I am keeping him with me for the time being,” she said.

This does put her back into the position of primary caregiver, and since she now lives alone, it has changed everything for both Karin and Nicholas.

“In addition to coming to New Leaf Link in Harrowsmith three days a week, Nicholas took art lessons in Kingston, and had other regular activities scheduled. Now he is here with me, which is safe, but he misses his friends, his normal routine. He had a life in Kingston. He misses that,” she said.

For Karin Steiner, whose husband died in 2015, the role of sole caregiver for Nicholas is also a challenge, and a stress. She fell on the rocks by the water last week, and needed stitches.

“I was fine, but what would have happened if I was not fine. I find that stressful.”

In her role with New Leaf Link, Karin had been involved, with others, in the development of online programming, which received some grant money last week. (see sidebar)

The normal New Leaf Link programming was immediately suspended when the church closed in March, and a return date for in person programming is still a way off, with many unknowns as to what it will look like.

“The church needs to be open for booking first, which they are being careful about, and we also need to see how we can make it work,” she said. “There are a lot of unknowns.”

Julie Hunt, of Sydenham, is the mother of Joel, who with Nicholas Steiner was one of 3 original New Leaf Link participants in 2009. She was in Mexico on vacation in early March, while Joel, who normally lives with them, was in a group home run by Ongwanada in Kingston while they were away.

“We realised after a week that we had to cut our vacation short and get back home. Joel and I have been at home ever since,” Julie said.

Julie is employed as a caregiver at New Leaf Link, so she is off work.

“Joel has been home since COVID hit. Luckily it is summer now and we have a pool, so he can at least enjoy the water, but it is not easy for him, or for me, really,” she said. “The saddest part is that Joel has lost his whole world. He misses his friends at New Leaf Link. The highlight of his week now are the online New Leaf Link sessions. At least he sees his friends on the screen”

Even the weekly shopping trip is off.

“We used to go to Foodland, the post office, and the bank once a week. It was a routine, and everyone knows Joel, but that is off as well. Now I go myself on Friday’s, when my husband has his day off. To be honest I am dreading the coming winter,” she said

In Sharbot Lake, Community-Living North Frontenac has been faced with many challenges since mid-March.

“The impact of COVID-19 on our agency has been considerable. Many of the people we support have had their lives change over night, and in some cases, they do not understand why things have changed,” said Dean Walsh, Executive Director. “Families have had to make adjustments to their own lives and schedules, in ways they have not seen before. Some of the people we support have not been able to go out at all, social distancing is not easy for them. They are lonely, they are depressed, just like other vulnerable people who are shut in. Social distancing comes at a cost.”

He pointed out that not only are people with developmental disabilities among the most vulnerable people in the community, “I would add that they are among the most devalued in the community. They do not always have friends, families, or support systems to carry them through a pandemic.”

“Our employees are frontline workers,” said Mark Hudson, who is the Community Living-North Frontenac Board Chair and the minister with the Sharbot Lake Pentecostal Church. “They have come to work each day to face the stresses and challenges, and are making a difference in the lives of the people we support. We are lucky they have been so diligent.”

The Community-Living office has remained open, but only to staff since March. It is now open to the public, within protocols that were outlined to agency staff by an inspector with KFL&A Public Health.

“They were very helpful, but very clear as well, about how we needed to operate. We are committed to safeguarding everyone, so all visitors to our office will go through the screening process,” said Dean Walsh.

Community Living operates the Treasure Trunk, a second hand store, which reopened last month.

“Some people we support normally work there, but aren’t able to now. The store is valuable to the community, and we were pleased when it was able to reopen.”

The Ministry of Children, Community and Social Services (MCCSS) has provided extra funding to help Community Living agencies with added costs for respite, protective equipment and supplies, which has helped out quite a bit, said Dean Walsh.

“But it continues to be hard on everyone,” he said.