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Many facilities for the developmentally disabled remain under pandemic lockdowns


Families with loved ones in facilities for the developmentally disabled have been eager to spend the holidays together. But those facilities face continuing lockdowns. From member station WSIU in Carbondale, Ill., Steph Whiteside reports.

STEPH WHITESIDE, BYLINE: The Murray Developmental Center in Centralia, Ill., is home to around 250 residents, many of whom are medically fragile. During the pandemic, these residents and their families have been separated by lockdowns, which have continued long after the rest of the country has been opening up. Rita Winkeler runs the Murray Parents Association.

RITA WINKELER: One day they just tell us, you can no longer come in. And the next time we got to see our loved ones was four months later. And the day they told us we could come, the next day, that very night, someone tested positive, one of the staff. So then we had another two weeks we had to wait.

WHITESIDE: Dr. Margaret Nygren, who heads the American Association on Intellectual and Developmental Disabilities, says the impact is greater for people in these homes because of isolation.

MARGARET NYGREN: Taking away even small amounts of access to the larger world can be devastating.

WHITESIDE: Murray residents and their families face the same pandemic challenges as everyone else - uncertainty, isolation and worry. But families had additional challenges. Some of Murray's residents were able to understand what was going on, like Ineke (ph), who's proud of the way she's stayed strong.

INEKE: This pandemic, I've been a trooper right through it.

WHITESIDE: Other residents, like Winkeler's son, Mark, don't have the capacity to understand why they're suddenly unable to see their families.

WINKELER: But how do you explain to someone like our son, who functions like a 9-month-old, all of a sudden, his mom's not coming anymore and his dad? And you don't see him. It was just really horrible.

WHITESIDE: Rita Hicks (ph) tried to keep in touch with her sister, Renee Horn (ph), but she says phone calls are difficult.

RITA HICKS: She makes her little noises into the phone. And I talk. So I guess, maybe, that helped a little, too. But I just - you never really know what she understands.

WHITESIDE: The pandemic caused Hicks to miss her sister's 50th birthday.

HICKS: We were going to have this great party and all of this stuff. And instead - I mean, I did send stuff. And they all decorated. And they got dressed up. And they had cupcakes. But I wasn't there for it.

WHITESIDE: The holidays have been painful for families who bring their loved ones home to visit or, like Rita Hicks, take the holidays to Murray.

HICKS: We usually bring Christmas to her. We show up Christmas morning. We bring pancakes or doughnuts. And we open her presents.

WHITESIDE: But even as some restrictions have eased, those can all be derailed if a staff member catches COVID, something Winkeler says canceled the facility's Halloween celebration. Dr. Nygren says facilities like Murray are usually licensed by the state and may be subject to stricter public health guidelines. That, combined with a workforce shortage that predates the pandemic, poses challenges.

NYGREN: It's a situation where, you know, one staff person coming in can affect the lives of, you know, a large number of people because they're all dependent on a very small number of staff.

WHITESIDE: Ineke just hopes that she'll be able to see her family again soon.

INEKE: Grandma Ruby (ph) and Aunt Cathy (ph), I'll see you for Christmas. I love you. I love everybody.

WHITESIDE: But expressing that love from a distance just isn't the same. And whether her family will be able to visit on Christmas remains up in the air.

For NPR news, I'm Steph Whiteside in Carbondale, Ill.

(SOUNDBITE OF MAD MOUNTAIN'S "TO BE MADE AS NEW") Transcript provided by NPR, Copyright NPR.

Steph Whiteside
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