When Laura Sickel Baumann got the phone call in 2018, she first knew she needed to get her son back home to Chicago.
He’d been injured in an accident in New Orleans. She eventually arranged a flight back to Chicago, where after surgery, he was taken directly to Shirley Ryan AbilityLab to begin rehabilitation.
It was the first of many logistical puzzles in caring for her adult son, who suffered a spinal cord injury. Where would he live? How do they get a wheelchair? And how would he wheel it into their Evanston house? When he was finally home, how could they make their house’s interior meet his new needs?
Families who face a severe injury with life-changing needs, or a family member whose health is deteriorating, often are faced with serious and sudden costs as they confront renovating their homes and adapt to pressing needs.
For Sickel Baumann, this meant adding a ramp to the backyard, and making the first floor of the home a place where her son could live.
They were lucky, said Sickel Baumann — with her experience as a designer and her husband’s as an architect, they were aware of how to make their home accessible, widening door widths, updating bathroom fixtures and changing the height of light switches.
“We know how to draw what needs to happen. We know clearances and all that sort of thing,” she said. “I thought so much about other people, because we were fortunate enough that we could do this on our end, and that we had resources.”
At Shirley Ryan AbilityLab, people arrive after lives change in minutes — a gunshot wound, a car crash, a stroke. When patients are discharged, they often need to approach their home differently. Occupational therapist Kelsey Watters said they first consider locations like the bathroom and the entry.
“Here in Chicago, we have a lot of walk-up units. Sometimes there are stairs before you enter,” Watters said. “Some of those very simple things can often be most challenging.”
Within the home, people consider entire renovations or smaller changes, Watters said, like adding accessible shelving in a kitchen or a tub bench in the shower.
“Instead of having to do a full remodel and put in a walk-in shower, somebody could just swing their legs over the edge of the tub and access the shower,” Watters said.
Occupational therapists also help patients think through whether they can operate things like light switches, televisions and computers. For example, someone with a spinal cord injury might have limited reach or hand control; a person with a traumatic brain injury might not have the cognition for organizing the home and figuring out appliances.
“Each situation is so unique,” said Janet Bischof-Rosario, an occupational therapist. She said they try to think of the simplest fixes, because this can be overwhelming for families.
“It’s definitely a big stress,” she said.
When Gerry Labedz’s wife began to lose her ability to stand and walk after living for years with the brain cancer glioblastoma, they began making adjustments to their Chicago home. An occupational therapist visited their home and gave them advice on what to do to make the situation safer, Labedz said.
“She was in a wheelchair and, let me tell you, life changes from no wheelchair to wheelchair, just super dramatic,” he said.
The first thing they needed was a ramp. He learned there was a lot to know about ramps. First, they must align with the Americans With Disabilities Act guidelines. Options exist: Some get a folding ramp; others rent a ramp, but Labedz found ADA-compliant rentals very expensive.
Their home had only three steps leading up to it, and before the ramp, it would take four people to help his wife into the house, he said. A carpenter friend built them a ramp that stretched all the way to the sidewalk.
“It’s all overwhelming, when it happens,” said Labedz, whose wife died in 2019.
Renovations like these can be expensive, and time intensive. Although financial help for home modifications is available in some areas for people older than 60, when a younger person is ill or injured, support can be harder to find.
Still, some resources are available in Illinois.
For crime victims, the Illinois Attorney General’s office has a Crime Victims Compensation Fund that pays for losses incurred by crime victims, including the purchase, lease or rental of equipment necessary to make a victim’s property more accessible.
For people younger than 60, the Illinois Department of Human Services offers a Home Services Program for eligible applicants who need help with daily life in their home. A gunshot victim who suffers a spinal cord injury, for example, might be unable to access the bathroom. They can seek help with adaptations like grab bars, the widening of a doorway to enter the bathroom, or installing a roll-in shower.
And the Illinois Assistive Technology Program, a state nonprofit for Illinoisans with disabilities, offers loans up to $5,000 for home modifications.
In Chicago, the city’s Department of Housing will provide small home improvements for low-income seniors, like wheelchair ramps and door repairs, at no cost through the Small Accessible Repairs for Seniors program.
For people younger than 60, the Mayor’s Office for People with Disabilities has a home-modification program that can help with things like ramps, accessible sinks, stair lifts, roll-in showers and widened doorways.
One issue with some of this funding is that although applications are accepted, funding can run out. For example, new applications for the city’s home-modification program are being rolled over to the beginning of next year, a city spokesperson said.
During her own search for information and resources, Sickel Baumann said she found a lot lacking. She was surprised at the lack of financial help available, especially for young people. She learned so much over the course of two years, she has considered hosting informational sessions for people in similar situations.
The first thing to think about, she said, is the steps to get someone in a home.
“The golden rule is you have to be able to get into the living space,” she said.
Many people need a ramp or a lift. Other questions to consider: Could the person live on the first floor without too many costly renovations, and in a space offering enough privacy? Baumann and her family made a bathroom accessible on the first floor, so that her son didn’t need to navigate stairs.
“It’s very important that people assess what the needs are of their particular person,” she said. “Our son is only 21 years old, so he’s very hardy. He could easily get on a mechanical lift and come up. But elderly people, you have to think, would they be able to operate that by themselves?”
The family also considered her son’s overall well-being. He could no longer visit his “cool-guy cave in the basement,” she said. But he wanted a place to meet friends, so they extended their patio and set up furniture in his now-bedroom, to create places for him and his friends to hang out.
They also chose the back route for him to enter the home, because her son did not want a ramp in front of the house. “He didn’t want people to perceive that he was not able to be a functioning citizen. He’s very, very sensitive to that.
“He is an amazing human being,” she said. “It’s been a journey, but he is a great guy.”