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Determining Need During Illinois' Impasse: Governor Lobs DON Back To Legislators

Streator Unlimited staff member Sue Donnell helps client Jim Young complete wooden puzzles during classroom activities. Roughly 80 percent of the organization’s budget comes from the state, which was six months behind on payments to Streator Unlimited

Thousands of senior citizens and persons with disabilities are waiting to learn if Illinois will change how it determines who qualifies for state aid and what kind of services are provided. As the state's embroiled in budget gridlock, it's one of the areas Governor Bruce Rauner tried to cut back on spending. But legislators (including a handful of Rauner's fellow Republicans, a rarity) voted to prevent that.

On Friday, Rauner used his veto powers in an apparent attempt to strike a balance.

It comes as Illinois is working with the feds to overhaul the assessment. In the meanwhile, advocates are figuring out just what Rauner's move means.  Legislators expected to revisit the issue when they're back in session Tuesday.

"DON" is an acronym that stands for Determination of Need.

It's the test Illinois gives to people with disabilities, the elderly, maybe someone with Alzheimer's, that does just what it describes: It determines a person's level of need for help, with things like eating, bathing and getting out of bed.

"How that score works is: On side A, we look at the functional impairment of the client, and we score them from a 0 meaning they need no assistance whatsoever with that, there's no risk or no harm to them, for doing that task. And it progresses upward to a 3. Meaning that person needs maximum assist with that task to be able to maintain and stay in the community," says Marsha Nelson, with the Illinois Council of Case Coordination Units.

There's a "side B" to the test, too. 

"We look at the formal and information supports that our clients have in the home to assist with those tasks, and we lower accordingly," she testified earlier this year at a Senate committee.

The higher the DON score, the greater the need.

For now, anyone with a minimum score of 29 qualifies for help, be it nursing home care, respite, meal delivery service, or assistance in their home.

Something John and Mary Schnell, of Springfield, say they rely on.

"We get four hours a day of something called Help at Home, where a girl comes to our house, and whatever we need, basically. If I need to go shopping, she'll take us shopping, if I something done around the house, she'll help with that. And it's just been a Godsend for us. Without it, I'm not sure how much longer we could manage and stay in our home," Mary Schnell said at a press conference earlier this year.

Mary, who's 82, says her husband has something called Lewy body dementia. Because of it, for the past several years, she's had to take care of him. Do pretty much everything for him. Except for when the help comes, or when -- thanks to state services -- John goes to adult daycare for a few hours, twice a week.

"We've been together for, almost 65 years, and we're hoping we can stay together,"  she said.

Mary says she's not sure she could keep it up if they lose the in-home help. She'd feared that would happen under Rauner's initial plan. He'd moved to raise the minimum score someone needs on the DON to qualify for access to government aid -- from 29, up to 37.

Amber Smock, with Access Living, a disability rights and services organization fought the change. "The idea was that, 'we'll make it harder to get into the program, then we will have to spend less money, because there will be fewer people to pay for'" she explained of the thinking behind Rauner's proposal.

Illinois would have an estimated 34,000 fewer people to pay for: it's believed 10,000 people with disabilities and 24,000 seniors would lose access if the threshold rises.

Legislators voted to prevent that; in September, they passed a measure that'd basically guarantee everyone getting help, would keep it.

You may think that when it got to Gov. Rauner's desk, he'd have rejected the bill in an attempt to revert to his original concept.

He didn't.

For the most part he agreed to keep the lower score of 29 in place. But not fully; he used an amenndatory veto to modify legislators' plan.

"Illinois is recognized as a state which serves a disproportionately high percentage of low-need individuals in nursing homes," Kelly Cunningham, an administrator with Rauner's Dept. of Healthcare and Family Services, told legislators.

That gets to the heart of what Rauner changed: his veto message says Illinois will provide either at-home OR nursing home care -- to those who qualify, not both. He wrote in his veto message that prescribing institutional care for those who don't need it is "wrong for the individual, and for taxpayers."

It sounds simple. All the governor did was switch out the word "and" for "or."

"The governor's AV message in the DON protection bill is short on details explaining the full breath of what the "and" or "or" words truly mean to the lives and well-being to thousands of Illinois residents," the AARP's Ryan Gruenenfelder said Friday.

'"There are several questions that come to mind," he said.  "If the nursing home score is raised, will state resources and services for the mentally ill be available? Will resources for the Community Care program be available, in light of this year's prolonged budget crisis? Especially if great number of nursing home residents now transition to Community Care program services? Open-ended questions for thousands of seniors, nursing home residents and the disabled community are leaving them fearful, concerned and wondering if this holiday season will leave them alone? Or will they face premature nursing home admission?"

Other advocates, such as those with Access Living, said  Friday afternoon they were still reviewing and analyzing Rauner's action.

Answers to AARP's concerns could depend on what legislators do; the measure’s been lobbed back to them. Legislators have three options: They could leave the measure untouched, killing the legislation entirely; they could vote to accept Rauner's changes; or, in the most likely scenario, they could attempt to override Rauner's amendatory veto, restoring the measure to its original form. 

Pam Comstock, the director of the Health Care Council of Illinois, a nursing home industry group, is pushing for an override. "Rauner’s amendatory veto strips away 24-hour skilled medical care and replaces it with a few hours a week of housekeeping chores," she said in a statement. "Rauner’s view of the future of long term care for people who cannot dress themselves or manage their own medication is to keep them isolated in an apartment with assistance of a part-time housekeeper."

An override would require a supermajority of 71 votes in the Illinois House. In September, six Republicans helped the measure surpass that. However, Gov. Rauner's grip on the caucus, as well as the concessions he made with his amendatory veto, could make it difficult for the GOP representatives to do the same this time around. 

Amanda Vinicky moved to Chicago Tonight on WTTW-TV PBS in 2017.
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