by BETH ALTENA
When Beth Sturr contacted the Squire for a story about her daughter, she said she had been planning the article for 18 years.
Kailey Sturr, who will be 18 in May, has Angelman Syndrome. The smiling, active girl can do many things-help with laundry, chose her own meals, give hugs. She is also non-verbal, is mentally at the level of a toddler and traditionally would either live at home her entire life or be placed in a group home.
Her parents have a different vision for her.
Before the Sturr family settled in Rockford, they knew they wanted their daughter to eventually live in her own home and achieve a level of independence formerly unheard of for a person with Kailey’s disability.
Planning to settle in West Michigan, they called schools and visited towns. When they talked to Rockford Public Schools and the person in charge of the programs for students with disabilities, they felt what they called “such a warm welcome.”
When they saw the downtown, that was the end of the search. Kailey started in the district in the pre-primary impaired program at Meadowridge Elementary and has moved all the way up through to Rockford High School, where she enjoys eating lunch with other students. “Kailey has risen to her potential in Rockford Schools,” said Beth.
Now, at 18, it is time for Kailey to transition to the next phase of her life. Years ago, her parents purchased the home next to theirs on Courtland just north of Monroe. They are ready for Kailey to live in her own home.
“It’s a block from Rocky’s, a block from the bike path, close to all the festivals. It’s the perfect situation for a disabled adult to be a part of,” said Sturr.
Fifty years ago people with severe disabilities were routinely packed off to institutions. Parents of children with disorders such as Downs Syndrome weren’t given much in the way of options. Now group homes or living at home are common. The idea of setting up a disabled person in their own home is brand-new and cutting edge.
“We have had to get creative,” said Sturr. “Getting the house was probably the easiest part.”
The next piece in the puzzle of the vision for Kailey is to find a roommate or roommates for her. Ideally the Sturrs would like to match Kailey with another disabled girl. Kailey qualifies for 77 hours a week of care but requires 24-hour care. The Sturrs hope the perfect match will be another girl who qualifies for care. Hopefully there will be a way to pool their resources to enjoy this unique living situation.
Another idea is for a caregiver who can exchange duties for live-in privileges. According to Sturr, there are several scenarios that might work.
The home itself is sunny and charming-and childproof. It has a large, fenced back yard, a playroom and three bedrooms, but is not handicap accessible. Kailey’s current caregivers come from MOKA, an organization that helps disabled people from the counties of Montcalm, Ottawa, Kent and Allegan.
According to caregiver Anissa Olinger, Kailey’s future living conditions are unique. Part of the preparation for Kailey living “alone” is to introduce her to her fellow community members.
“Her neighbors know her, the library knows her, business people are getting to know her. She was happy before, but she is even happier now that she is getting to know the community,” Olinger said. She said part of Kailey’s independence is to be very active in her town.
Beth Sturr has been working on having Kailey be a visible and known individual in Rockford. She has been giving to Locks for Love for years, grows flowers to give to neighbors and business owners, is a restaurant familiar and gives out bottled water on the White Pine Trail.
Another person with a disability would likely find the same satisfaction in this new living arrangement.
“Beth and Tom are breaking new ground with this,” Olinger stated.
Taking this next step of finding a roommate for Kailey and moving her next door into her own home is one Beth has envisioned for a long time. “It’s natural for a child to move out at this age. With Kailey it has just taken some creativity. With Kailey the process is life-long,” she said.
Beth and Tom Sturr would like to talk to people who have a family member who may be a match for a new life in “Kailey’s House.” They can be reached at (616) 866-8837.
The family bought two bricks at Peppler Park to express their idea of Rockford. The words read, “Within the heart of each community everyone belongs.”
“It’s not the movie-style ending a parent pictures, but since she was a toddler this was our vision-to be in her own home, with staffing that meets her needs and the security of living in her own home in her own community.”