Naperville family's creative home solution for son with autism
Editor's note: This is Part 3 of "Caregivers Crisis: When help isn't enough for parents of disabled adults," a three part series. Part 1 | Part 2
Luke Koupal kneels on the kitchen floor and presses his face into the fur of Starburst, his second golden retriever by the same name.
He's just gotten up from a post-breakfast nap under two well-worn Cubs blankets and the schedule says it's time to empty the dishwasher at the Naperville home where he lives with his parents.
Luke, 24, would rather be upstairs in his room, decorated with Bugs Bunny and Scooby Doo puzzles, doing “scary stuff,” which means watching online videos of animated Halloween displays like “reaper of souls” and “the rotten heads.”
“I like all the decorations,” he says. “I like the witches.”
But it's a Tuesday, and that means after the dishes are put away, it's time to turn on the shredder and go to work. Schedule says.
The schedule is one example of how Luke's parents have gotten creative as their adopted son with autism has grown older. Another example is coming, and it will help Luke retain the comfort of his home while gaining independence.
The Koupals are turning their house into a group home by building an addition and partnering with a disability services nonprofit.
Until it's ready, normal life for Luke goes on.
Scheduled life
At his mom's prompting, Luke detaches from the dog and unfolds his lanky body. The redheaded lefty has a typical day ahead of him - shredding documents for confidential destruction in a business his dad set up for him, watching cartoons on a portable DVD player and having a lunch visit with one of his two grown sisters and her kids.
If a day isn't typical, he'll ask incessant questions, sometimes every 15 seconds for an hour: “Then what?” “And do what?”
“It can be the same question,” his mother, JoAnne, starts.
“Over and over again,” his father, Matt, finishes. “It wears on your patience.”
Luke and change don't mix. Aside from his autism, he has ADHD and obsessive/compulsive behaviors, and he doesn't process information or social cues the way most people do. He wears glasses for poor vision and a hearing aid to assist the one ear with which he can partially hear.
Routine keeps him comfortable, his parents say - hence the second incarnation of Starburst, the familiar Cubs gear, the timeless bedroom decor, the Halloween videos, the ever-present schedule.
But change is already happening in the life of the young man who wasn't expected to walk or hear or see or have much of a being.
Luke's parents say they're feeling the effects of getting older - Matt is 60 and JoAnne 62 - yet their son's needs are unrelenting. He needs help with cooking, laundry and cleaning; reminders to get dressed and put things away. He falters without prompts from his mom to get his shredding done, to “stop lovin' on the dog.” And he's constantly hearing pleas from both parents to pull himself away from the witches and grim reapers on the screen.
“He's going to be with us forever, but we aren't going to last forever. ... It's just a reality,” Luke's father says. “So what are we going to do?”
Housing partnership
The couple's plan for their youngest son began at lunch a couple of years ago. The father of a young woman with disabilities told Matt of his family's plans to build an addition for her to live in.
That idea had merit, Matt thought, but the solitude wouldn't work well for Luke; he has a “spunky” personality and loves to be with people, grabbing their attention and making them laugh.
The Koupals decided to try it in reverse. The 1,200-square-foot addition recently built onto the back of their Naperville home is for the parents, not the child.
The plan is to turn the original shell of the Koupals' four-bedroom house into a group home for Luke, up to three roommates and a round-the-clock hired caregiver or two, all under the management of the Ray Graham Association, a Lisle nonprofit that serves about 2,000 people with disabilities in and near DuPage County.
“We feel like it's a pretty economical way for us to provide for our son to stay in his home,” Matt said.
An unusual housing setup that effectively creates a duplex in a single-family subdivision, the change required special approval from the Naperville City Council, granted last year.
Unusual? Sure. But it's going to work, Luke's parents say.
Their son gets to keep his childhood bedroom, straight up the stairs, with its blue bedding and books about bugs, boxes of pirate-themed bandages and a small TV. His parents get to stay near their son but step away from providing his constant care.
“Matt and his wife and his son have come up with a unique way to do something different that meets his son's needs but then also is really in partnership with us,” said Kim Zoeller, Ray Graham executive director. “We're all holding our breath a little bit going, 'Oh, I hope this works.'”
At $200 a square foot, the addition with a master bedroom, bathroom, kitchen, office, living room and separate entrance cost about $240,000, giving the Koupals a mortgage for the first time in years. The benefits seem worth it.
“When we get older, his caregiver can become our caregiver, which might allow us to live here longer yet,” Luke's father said. “We're melding Luke's needs with the aging parent problem.”
Growing older
Aging is among the most vexing problems for parents when their children with disabilities turn into adults.
School services for people with disabilities cease the day before they turn 22. After that, advocates say their parents feel an even stronger burden to provide - day programming for work, companions for socialization and recreation, assistance for cooking and hygiene, not to mention a safe place to live.
At the same time as disabled children become adults, their parents become senior citizens. An estimated 32,732 people with disabilities in Illinois are living with caregivers age 60 and older, according to the 2015 State of the States in Intellectual and Developmental Disabilities report by the University of Colorado. Count Luke among them.
The Koupals and other aging parents need to “separate the brain from the heart” and plan for their children to be as self-sufficient as possible, says Brian Rubin, a special needs attorney in Buffalo Grove.
But that requires a leap of faith, says Mary Anne Ehlert, president and founder of Protected Tomorrows, a Lincolnshire financial and legal planning firm for people with disabilities. No matter the struggles of caring for a disabled adult at home, parents often don't feel ready to let go.
“There's no guarantee that we're going to live,” Ehlert says. “The transition from my life to somebody else taking care of my child should be always going on.”
The Koupals seem to recognize this better than many, Zoeller at Ray Graham says. Their effort to address their son's housing needs without placing him in a typical group home is part of a trend.
Creative living
Illinois takes heat for failing to adequately provide for people with disabilities. The state is ranked 47th for how well its Medicaid programs serve people with disabilities, according to the 2015 Case for Inclusion report by United Cerebral Palsy.
But for all of its shortcomings, the state is trying to make progress on housing. Greg Fenton, director of the Division of Disability in the state department of Health and Human Services, says Illinois is working to loosen its own rules so housing decisions can be “more self-directed.”
Housing money for people with disabilities is awarded through Medicaid to applicants on the state's PUNS list, which stands for Prioritization of Urgency of Need for Services. The list has 8,327 applicants waiting for housing - 6,307 who need 24-hour care and 2,020 awaiting a home with less than round-the-clock support.
The money flows from clients selected off the list to providers such as the Ray Graham Association, which owns and manages 42 properties as group homes. Owning the houses comes with grass to mow and neighbors to keep happy. Zoeller says she could do without some of those responsibilities if more families like the Koupals rent their houses to the organization.
“We're trying to look at separating the home from the services,” she said, “so the family owns the home and we do what we do best, which is provide services.”
The state supports the move to “decouple” housing from other health, work, recreation and support assistance, Fenton said. Ray Graham is far from the only disability organization that might be better off not functioning as a landlord. And allowing people with disabilities to find a place to live on their own terms also allows them to spend their Medicaid funding on personal aides or nursing care to help them thrive.
For the Koupals, this choice means they've been recruiting roommates for months. They're still seeking buddies who've been approved from the PUNS list for housing money and who share Luke's love of Halloween and pirates, the Cubs and cartoons, Xbox and golden retrievers. Matt is still putting out his email address, mkoupal@aol.com, in hopes of connecting with the right match.
“Luke needs to get along with the guys and we need to get along with the families,” Matt said. “This is a marriage. This isn't just roommates; this is a lifelong thing.”
A life together
The next step of the Koupals' lifelong journey with Luke is about to begin. With the addition complete, soon it will be time to move family belongings out of the bedrooms, get the facility licensed as a group home through the state Department of Human Services, set the budget, hire the caregiver(s), move in the roommates and give Luke a fresh taste of independence and adulthood.
The Koupals expect this will take another three months, maybe more.
State licensure involves inspections and several steps. The parents of one of Luke's likely roommates backed out after getting cold feet. The move, though slight, still will be a big change for status-quo Luke, who's got “a love tank that needs to be filled very full,” his parents say.
None of these will derail the project, Matt says. But these final hurdles illustrate why the couple want their youngest son to keep living in their home - his home - for life.
“It's very difficult when you've built your life of so many years of caring for this young person,” Matt said. “We've made this determination that we're sticking this out together.”