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Chicago area woman's disability benefits at risk because she's saved for retirement

Woman's disability benefits at risk because she's saved for retirement
Woman's disability benefits at risk because she's saved for retirement 04:39

CHICAGO (CBS) – She felt trapped: work and save for retirement but lose eligibility for critical help.

Another option: quit her job.

CBS 2's Lauren Victory had the story of a suburban woman in a catch-22 who is hoping to catch the attention of Illinois lawmakers.

Many start their mornings with a routine. Barb Vree gave CBS 2 a glimpse of hers as she stocked the necessities and prepared the essentials for her adult daughter, Katie.

"I learned the hard way not to pour my own coffee," Katie said.

Katie uses a wheelchair after a spinal cord injury at age 17. She has limited upper body function.

"My arms have lopsided strength, so it makes it really difficult to pick things up," she said.

That didn't stop her from graduating college. She can drive a car with modifications, but her disability does prevent her from tasks that are easy for others.

"Getting in and out of bed, getting dressed and undressed, getting in and out of the shower," Katie said. "Largely what I need with is personal care necessities."

For now, mom is her caregiver, but Barb isn't getting any younger.

"We need to plan for the future when they're no longer physically able to take care of me," Katie said.

"Oh yeah. I've already had some back issues," Barb said.

Katie goes every day to her job as a health care coordinator. Socking away savings for the inevitable day someone else needs to step in. 

But without a personal assistant, "I wouldn't be able to get to do my job," Katie said. "I wouldn't be able to work."

And Katie wouldn't be able to be a productive, tax-paying member of society, she said.

"While I have the health and strength to do that now, it's imperative that I save as long as I can," she said.

Ironically, it's Katie's fiscal responsibility that could cost her.

"It was a complete shock," she said.

She received a notification from the Illinois Department of Human Services that her benefits from the Home Services Program were being terminated.

A state website described the point of the program is to help people with disabilities "remain in their homes and live as independently as possible" and empower them "to live self-directed lives, be actively involved in their communities."

Katie seemed like she'd be a poster child for the program, but her job put her over the limits to qualify. It's not her salary that's the issue. It's her retirement account.

Attorney Amy Delaney is behind the appeal, trying to get the state to reconsider canceling Katie's benefits. She argues that 401k money is not accessible for someone Katie's age. So it shouldn't be counted against her.

"She's not allowed to touch the retirement account until retirement or unless there is some sort of catastrophic situation and Katie has a chronic condition," Delaney said.

The state's take seemed to be "rules are rules."

Eligibility for the home services program stops at $17,500 worth of assets. Katie's retirement savings are about double that, but not nearly enough to pay for a private personal assistant that she estimates will cost about $70,000 a year.

"It's not like I'm raking in a six-figure salary," Katie said. "I'm just an average health care worker."

One scenario would be that Katie stop working, which is not something she wants to consider.

So how does holding down a steady job improve or at least maintain the health of somebody with a spinal cord injury?

"It provides that reason to get out of bed," said Dr. Michelle Meade, who runs the Center for Disability Health and Wellness at the University of Michigan.

Meade's research shows people with disabilities who work report lower rates of depression.

"In particular, for folks with spinal cord injury, folks who are employed live longer than those who are unemployed," Meade said.

Victory: "Do you have any sense for how many people are in Katie's position or could be someday if this doesn't change?"

Delaney: "Thousands."

"I absolutely think there needs to be a policy change," Katie said.

That's why Barb and Katie invited CBS 2 to see their daily ritual. They hope lawmakers are watching.

CBS 2 noticed that the benefit Katie wants re-instated through the home services program is meant for people under the age of 60. Most don't retire by then, so why are 401k contributions considered a part of eligibility?

CBS 2 asked if the Illinois Department of Human Services is considering a policy change.

A spokesperson said yes. The change would need federal approval then and OK from a state administrative oversight committee.

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