Rita Winkeler is head of the Murray Parents Association. Her son, Mark, lives at Murray Developmental Center in Centralia, Illinois.
Rita Winkeler, who runs the Murray Parents Association, said the pandemic was devastating on her family – as well as for many more with family members in the facility.
\”One day they [told] us you can no longer are available in, and subsequently time we got to see our family members was four months later,\” Winkeler said
On another occasion, Winkeler's family had plans to visit her son the following day. However the previous night, a staff member tested positive for COVID-19.
\”So then we had another fourteen days to wait,\” she said.
Families with family members in facilities for that developmentally disabled are especially eager to spend together this season. But because the pandemic continues, they face new uncertainty and recurring lockdowns even as all of those other country attempts to get back to normal.
Margaret Nygren, who heads the American Association on Intellectual and Developmental Disabilities, said the outcome of COVID-related closures is greater for people in congregate care facilities because they are already somewhat isolated from the world.
\”Taking away even small quantities of accessibility larger world can be devastating,\” Nygren said.
Murray residents and their families faced exactly the same pandemic challenges as everyone else – uncertainty, isolation and worry. But family members of people with intellectual and developmental disabilities face additional challenges, attempting to help their loved ones understand what's happening and why they will not visit.
Some of Murray's residents understood what was happening, like Ineke, whose guardians requested her surname not be used. Ineke said she's proud of the way she's stayed strong.
\”This pandemic, I’ve been a trooper right through it,\” Ineke said.
To help her pass time once the facility was on lockdown, Ineke said she considered arts and crafts.
Other residents, like Winkeler's son Mark, don't have the capacity to realise why they are suddenly unable to see their own families.
\”How do you explain to someone, like our son, who functions like a nine month old?\” Winkeler said. \”All of the sudden his [parents are] not coming anymore. It had been just really horrible.\”
Rita Hicks attempted to keep in touch with her sister, Renee Horn, who lives at Murray. But since Horn is non-verbal, Hicks said phone calls have been difficult.
\”She makes her little noises into the phone and that i talk,\” Hicks said. \”So I guess maybe that helped a little too. But you never really know what she understands.\”
The pandemic caused Hicks to overlook her sister's 50th birthday.
\”We would have this great party and all of this stuff,\” Hicks said. \”And instead, I mean, Used to do send stuff and they all decorated plus they got dressed up and they had cupcakes. However i wasn’t there for this.\”
The holidays happen to be painful for families, who normally bring themselves the place to find visit or celebrate at Murray, like Hicks does with her sister.
\”We fill up Christmas morning, we bring pancakes or donuts and that we open her presents,\” Hicks said.
But even while some restrictions have eased, plans could be derailed if a staff member catches COVID – something Winkeler said canceled the facility's Halloween celebration.
Nygren said facilities like Murray are usually licensed through the state and could be subject to stricter public health guidelines. That, combined with a workforce shortage that predates the pandemic, poses challenges.
\”It's a situation where one staff person arriving can affect the lives of a large number of people, since they are all determined by a very few staff,\” she said.
Ineke just hopes that she'll be able to see her family again soon.
\”Grandma Ruby and Aunt Cathy, I'll see you for Christmas,\” Ineke said. \”I adore you. I really like everybody.\”
Expressing that love from a distance is just not the same. Whether her family will be able to visit on Christmas remains up in the environment.