Rickielee Benecke of Bloomington said she knows what it's like to make difficult decisions about institutionalizing a family member. Benecke said a few years ago, she decided to move her mother into a nursing home.
Benecke is the executive director of Living Independence For Everyone Center for Independent Living [Life CIL]. It serves more than 4,000 people each year, of all ages, across McLean, Livingston, Ford, and DeWitt counties. It's one of 22 Life CILs across Illinois. Benecke said the kinds of care provided by groups like these could be at risk if recent Department of Justice statements become law.
During the pandemic, Benecke said her mom went a year at the nursing home without physically touching any loved ones, including children or grandchildren.
When her mom got sick with COVID, Benecke brought her home "we thought, to die." But as the family rallied around her mother's bedside, Benecke says her mom's health improved. She is still alive today.
Benecke considers this a prime example of the importance of in-home care. "She pulled through that, and it was the physical touch and being in the home, I know, that I feel, saved her."
A memo and a clarification
The DOJ issued a memo in June that argued states are not obligated to provide community-based care for people with disabilities. In July, DOJ officials went a step further indicating that they were changing the way they enforced the Americans with Disabilities Act.
Benecke said these statements contradict settled law.
"The Department of Justice seems to have forgotten that there are two laws out there and two cases that we do have to follow," she said, citing the American with Disabilities Act [ADA] signed into law in 1990, and the 1999 U.S. Supreme Court Olmstead decision, which formed the foundation of community-based care.
Now, the DOJ argues the Olmstead decision was too broad.
Benecke said that if states aren't obligated to provide in-home, or community-based care, people with disabilities could find themselves with no other options than being institutionalized.
Benecke said she's worried that the DOJ has moved to include its recent memo in two active lawsuits. She said, worst-case scenario, this could put the Supreme Court in a position to overturn the 1999 Olmstead decision.
Jo Salata of Bloomington has spent much of her adult life advocating for people with disabilities in the Bloomington-Normal area. She has served as a volunteer, board member, employee, and a consumer at Life CIL. She also recently graduated from Heartland Community College's Recovery Support Specialist program. As a specialist, she helps others who are in recovery from substance use and mental health disorders.
Salata said that at her lowest points struggling with mental and physical disabilities, Life CIL helped her find support groups for adults like her. She said that made all the difference.
"That peer support was amazing, and it was really life-saving. And it brought me out of isolation," she said. "It gave me camaraderie, and I really felt like I had people who understood, because they've been through it too."
Why is community-based care important?
Benecke said the shifting DOJ perspective puts at risk two common ways that people with disabilities receive care.
One is when the person lives at home and receives care there. Benecke said this could be as temporary as borrowing some equipment while recovering from a surgery or illness, or it could be more permanent care, such as nursing staff coming to visit the home for a set amount of hours per week. The second scenario allows people in an institutional setting to leave, in order to receive care in broader society.
Community-based care is important, Benecke said, because people benefit when they are in charge of their own routines and choices. She said even everyday decisions like what time to wake up, go to bed, and what to eat each day contribute to a person's feeling of independence.
"There is nothing like having a person with a disability having their own self-determination, self-direction," Benecke said. "Being able to hire who they want to come into their home and assist them with some very personal chores such as bathing, getting dressed, that sort of thing."
Cheryl Hahn agrees. She's the president of the Illinois Alliance of Peer Professionals, a statewide alliance of mental health and substance use peer professionals.
Hahn said "having access to that kind of care means the difference between living in your own home, staying connected to your family and community, and having a meaningful role in your recovery."
More freedom for less money
Benecke said community-based care is less expensive than nursing homes, saying the cost savings equate to approximately $37,000 a year per person.
Salata has worked with services in McLean County like the Problem-Solving Court (PSC) program. She said the PSC provides people with therapy, medication, peer support, help with housing and transportation, and mentoring about how to advocate for themselves in the future — all of which is less expensive than incarcerating them.
"So if you're looking at it from just an economic point of view," Salata said, "I think community services are better for everyone in the community, not just the people receiving those services."
Benecke has a hard time understanding the DOJ's motivation, saying "I can't think of anything, honestly, that is good," about their recent statements. She said her staff at Life CIL has reacted with "a mixture of shock and sadness" and a feeling that "we seem to be going back in time."
Salata reflected that "it really wasn't that long ago that people with disabilities were institutionalized, and it was commonplace." She added that it wasn't until 1974 that Chicago repealed their "ugly laws, where it was actually against the law to be out in public if you were considered unsightly or had certain disabilities."
Salata said that, at times, institutionalization is necessary, but it should be a last resort. She said without the community care she received, it's possible she could have been confined to an institution herself. Instead, she's able to work full time and contribute positively to McLean County.
Salata said "there's no reason for people to be stuck away in institutions when they can be getting help and functioning and being out in their communities."
Time to speak out
Hahn says IAPP will not shy away from advocating for community-based care options, and encourages others to join them.
"We need to be in dialogue with our legislators, with our community leaders, with our mental health institutions, in terms of what supports are going to be made available for our community," said Hahn.
Salata agreed that people with disabilities who are benefitting from community services should contact their elected officials and speak with their friends and families on the topic.
"Just go out there and tell your story if you're comfortable, and just raise that awareness," she said. She encourages people to look online, find out who their local and state representatives are, and contact them.
The stakes are high, said Hahn.
"The consequences could be devastating. I mean, to be institutionalized is to be stripped of your civil rights. I mean, not only is that unconstitutional, but it robs me of my dignity, and my ability to live my life. And to live it productively, responsibly, and lovingly," Hahn said.
What comes next?
The Illinois Department of Human Services [DHS] told WGLT it's reviewing the DOJ's opinion.
"Illinois is firmly committed to the principles underlying the Americans with Disabilities Act and the Supreme Court's decision in Olmstead, including ensuring that people with disabilities have meaningful opportunities to live, work, and receive services in the most integrated settings appropriate to their individual needs and choices. That commitment remains unchanged," DHS said in a statement. "The State will continue its work to ensure that Illinoisans with disabilities can access the services and supports they need in settings that promote dignity, independence, inclusion, and self-determination."
Hahn said she's not sure what comes next from the DOJ. Of the Olmstead Supreme Court decision, she said "any effort to reinterpret or narrow the federal government’s position on those protections deserves close attention."
Among other things, Hahn said she will be advocating for congressional oversight, "including examining the memo’s legal reasoning, its relationship to existing law and precedent, and its potential implications." Benecke said Life CIL is escalating the issue to state-level advocates for help.
