East Central Reporter

Rep. Charlie Meier shared a message on social media on April 8 to highlight a Springfield visit by Carrie Leljedal of Caregivers for Compromise, which advocates for disabled residents in long-term care facilities and their caregivers.

"It was nice to have Carrie Leljedal in Springfield," Meier, R-109, wrote on Facebook. "She works hard to make sure our handicapped love one are taken care of. During COVID, Carrie took leadership of the Illinois Chapter of Caregivers for Compromise that was created to help families from all levels of long-term care facilities gain access to their loved ones."

According to WICS, Leljedal was a key advocate for those locked down in long-term care and not allowed visits from loved ones during the pandemic. "By forcing quarantine on people living in long-term care, they're taking away their right that should be protected under the Equal Rights Act," Leljedal told WICS. Leljedal helped the group advocate for legislative change, including meeting with agencies like the Illinois Department of Public Health. "They listened, but the reaction we've been hearing for over a month is 'Oh, well we're working on new guidelines' and 'It takes time,'" Leljedal said.

"Carrie volunteered her time while she was contacting both state and federal legislators, public health officials and Centers for Medicare and Medicaid Services trying to ensure that all residents of long-term care facilities residents had their rights restored and where able to have access to their essential family caregivers," Meier wrote. "Thank you for all you do."

Caregivers for Compromise serves as "a common voice for our loved ones in long-term care facilities who have suffered or died from the effects of isolation protocols," according to the organization's website. "We seek safe and reasonable visitation to end the unintended consequences of prolonged physical separation and while we understand that the lockdown was done with the best of intentions and we understand that COVID kills, we know that isolation kills too." 

While many residents were allowed limited forms of visitation, many were not, including some who are bed-bound, have traumatic brain injuries, are blind or deaf, have mobility issues, severe autism, dementia or Alzheimer's.

In 2021, Leljedal fought for family members and essential caregivers to be allowed to visit loved ones in care centers, despite the pandemic. Her son, Lynn Ray, "lives in an intermediate care facility for adults with developmental disabilities who also are medically complex," Leljedal told WAND, adding that she had never gone more than nine days without visiting him. 

Lynn said family contact is very important to him. "I wouldn't be able to survive otherwise," he said. "I wouldn't know what to do without my mom." 

When COVID-19 hit, Leljedal and Ray were separated. "Everyone kept saying, take a deep breath, it will only be a few a weeks," Leljedal said. "A few weeks turned into a few months and now, a few months has turned into a year. It was the hardest things I've ever done."

As a result, Leljedal helped advocate for introducing the Emergency Essential Caregivers Act into the General Assembly as Senate Bill 160 in January.