Moving Toward Independence

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February 2022 View more

By Suzanne Baker

Like many young adults from Naperville, 26-year-old Troy Butler wants to live independently in the city where he has roots and friends.

Right now the 2013 Neuqua Valley High school graduate, who has intellectual and developmental disabilities, or IDD, stays with his parents, Cheryl and Rick Butler. He can’t rent an apartment in his hometown on the food service worker pay he earns from Organic Life at Granger Middle School, but he also can’t make too much money himself or he’ll lose his state and federal financial support.

What Naperville officials deem as affordable housing is out of reach for Butler. But plans are in the works by the city to develop a housing complex that meets the financial, living, and special services needs of adults with IDD, and provides units for older adults wanting to downsize without upsizing their monthly payments.

For parents of children with IDD, the lack of affordable housing is a cause of concern because they worry where their children will live when mom and dad are no longer there. Nationally, about 75 percent of adults with a disability live with an aging parent or other caregiver, according to a study released in 2020.

Butler says supportive community housing does not exist in the area for this growing population, and moving her son away from his friends and doctors isn’t the answer. “This is what he knows. To take him out of this area would be devastating,” she says.

Donielle Deering, whose daughter Megan Shields has IDD, said the alternative often is for a sibling to become the caregiver. “It’s an unfair ask. It’s not their child,” Deering says.

The solution is to develop an apartment complex in Naperville where adults with IDD can live independently and affordably—and to have it built as soon as possible so residents have time to transition to their new surroundings and a life without their parents as caregivers.

To prevent the apartments from becoming institutional rather than residential, a quarter of the units will be dedicated to adults with IDD. The remaining 75 percent will be open to older adults on fixed incomes.

The concept was well received by members of Naperville City Council, which in August directed the city staff to draw up the paperwork necessary to solicit concepts for developing 22 acres the city owns at the southeast corner of 103rd and 95th Streets. City officials say four proposals were submitted by the December deadline.

Naperville Senior Task Force cochair Rob Williams is eager to see the proposals and says he is hopeful this will spark city leadership to find other unused parcels the city has acquired. In 2015 the task force cited the lack of availability of affordable housing in Naperville suited to an aging population as a top concern.

The plan has the backing of hundreds of parents of children with special needs.Deering says they are a tight-knit group because their sons and daughters have been together in activities like Special Olympics, the Western Du­Page Special Recreation Association, or A Special Place—a nonprofit Butler created for those with disabilities to socialize and express themselves through theater.

What parents are seeking is a state-of-the-art housing facility in Naperville. Deering says it could be a model for future IDD housing complexes. All Naperville parents want the best for their children, she says, and their group doesn’t want to corners cut on safety or aesthetics on this project.

That is why they reached out to developer Gorman and Co., based in Wisconsin, for insight on the bricks-and-mortar aspect of such housing and to the nonprofit Ray Graham Association to ensure the site is properly equipped. Residents will require 24-hour staffing and assistance with such daily tasks as cooking, cleaning, shopping, and hygiene. Deering said the bar will be set high, and “we won’t accept status quo. We need to make it clear; this is not Section 8 housing.”

Pairing adults with IDD and elders is logical, parent Sherry Healey says, because both have a need for community. The younger residents will have a built-in set of grandparents to care for and the elders can look out for their younger peers, she says.

Butler says the parents want the facility to be used for community events and to serve as a field trip site for Naperville District 203 Connections and Indian Prairie 204 STEPS students to learn about living independently.

A Special Place is hosting a golf outing May 21 at Bliss Creek Golf Club in Sugar Grove to help raise money for the extras, such as bingo equipment, higher-end kitchen appliances to accommodate cooking classes and communal dinners, and other items the parents think should be included. For more information, call 630.254.9772 or go to asp4us.org.

The mothers say their children grew up in a community where they always have been accepted by every school group, whether through a buddy program in elementary school or an adaptive PE program in high school. That acceptance from neighbors and politicians, they say, shouldn’t end when they become adults. 

This story originally appeared in our sister publication, the Naperville Sun, and is reprinted with permission.

Photos by James C. Svehla/Naperville Sun