Gaining independence: After 34 years, Ben is living on his own

When Cindy Hill gave birth to her oldest son, Ben, everything at first seemed perfect. But Ben was born with a heart defect the required surgery at age two. Hill thought life would continue for her son like most little boys, but by Ben’s toddler years she saw he wasn’t quite like other children.

“Ben always seemed more fascinated with objects than people,” she recalls. “He played in repetitive ways—like spinning the wheels of his toy car, opening and closing the doors. He spoke in single words until a special preschool helped him catch up.”

Air frying chicken with auto-shut-off feature.By age three, Ben Hill was diagnosed with autism. Then, at age 9, he was diagnosed with 22Q, or Velocardiofacial Syndrome—a micro-deletion on his 22nd chromosome that causes Ben’s heart, speech, and learning issues.

“Oddly, it was a relief to have a diagnosis because we could learn what to expect,” Cindy says. “All his ‘random’ health issues were related!”

It may have been relief from a health standpoint, but Cindy was now facing a lifetime of caring for her oldest son (Ben’s brother, Tim, is four years younger). “I’ve always worried about Ben’s safety—social and physical—because he doesn’t tune into danger,” she says.

The family faced Ben’s challenges head-on and adopted a “full inclusion” plan with regular schools (and an Individual Education Plan) to build his skills with peers. Ben joined the Boy Scouts, went to Sunday school and on field trips, attended class parties, and joined special interest clubs.

“Inclusion is common today, but it was a new approach back in the 1990s,” explains Cindy. “Ben needed family advocacy and community support to be successful. He graduated from Shaker Heights High School in 2008 – what a proud moment for our family, watching graduating Ben cross the stage with his graduating brother, Tim.” 

Even after Ben graduated, he was still dependent on Cindy to care for him and meet his basic needs. But recently, Ben expressed an interest in becoming more independent. Thanks to 21st Century technology, Cindy was able to finally move Ben toward a more independent life.

Ben opens his keyless lock. He can also lock when he exits.At age 34, Ben has left the nest (or, rather, Cindy has left the nest) and he is living on his own in the Shaker Heights house he grew up in. Cindy also is now living on her own—in an apartment nearby on Fairhill Road.

Computers, video conferencing, sensors, and automated devices help make Ben’s independent living possible, along with a regular schedule, and some frequent visits from mom to “just check in.”

It has been difficult at times for both of them, but they have each found their own new routines.

Ben says he likes being on his own, and spends his time reading books, looking at Google Maps, and his favorite pastime: “I watch movies,” he says. “Japanese movies with subtitles.”

Cindy says she enjoys hiking, cycling, and kayaking during her free time. Eventually, she says she plans on traveling the world. “I really crave adventure after keeping myself extra safe to care for Ben,” she says.

Safety rails installed in bathroomMoving toward independence
It took almost a year to get everything in place so that Ben could function on his own, and Cindy could feel comfortable leaving her adult child for the first time in both of their lives.

It started with Cuyahoga County Board of Developmental Disabilities (Cuyahoga DD), an organization the Hills have worked with for years, making recommendations. The agency is well-versed in all of the new technology—even taking a demo model on the road to illustrate the available options.

Cindy and Ben worked with Timothy Sommer, a physical therapist and home modification safety consultant with the Cuyahoga DD, to make recommendations on safety features. Additionally, Safe At Home worked with the Hills on making modifications like handrails and grab bars in the bathroom.

“We received many safety additions to the house after a thorough evaluation of Ben’s needs,” says Cindy. “He has new safety rails and handrails inside—on the stairs, in the bathtub, and near the garage where he travels to the backyard swing. He also got an extension handrail for the outdoor steps by the street for his van pick up.”

Other modifications to keep Ben safe include motion sensors, keyless locks, and door monitors. There are motion sensors in Ben's bedroom and bathroom to detect if he is not waking up or not going to bed—or slips and falls in the bathroom. A medication dispenser that hold a month's worth of pills times the meds and sounds alarms for up to an hour until he picks them up. The cookware is auto-shut off; and the house has a wired security system for fire and break-ins.

The technology suits Ben well, Cindy says. “Ben’s rocking this independent living transition,” she exclaims. “He loves the easy-to-operate tech equipment introduced to him for his new lifestyle. They perform for him with comforting reliability.”

Cindy hired SafeinHome, which uses assistive technology, remote monitoring, and 24-hour live support to protect at-risk clients living on their own, like Ben. The company installed much of the equipment

Ben enjoys chats with staff.Ben checks in every evening at 8:30 p.m. via a video monitor for live chat with one of his remote SafeinHome care team members— Jose, Sandra, or Alyssa—and he can tap his screen to reach them anytime between 7:30 p.m. and 7:30 a.m., seven days a week.

The team can wake Ben up or he can alert them if there is a problem—a storm, a noise, a door opening, or smoke,” says Cindy, adding that smoke and CO alarms are part of the SafeinHome package. “And they have a calling tree they use—the paid back up person to come out to the house, the parent, and emergency services.”

“They are nice people to talk to,” says Ben. “SafeinHome makes me feel safer because they watch over me.” And while he admits he likes living on his own, Ben does miss his mom. “I missed you,” he tells Cindy. “I felt sad.”

Cindy says the technology, and even the basic safety tools, helped put her mind at ease as well.

“The best part is, Ben feels safe and familiar in his family home, and I can delegate my 24/7 Mama Bear radar to helpers,” says Cindy, 64. “I’m getting older so I would rather explore this option now to make sure his needs are being voiced.”

Cindy admits she’s been checking in with Ben frequently, and they have a Plan B in place. “This technology is really new, which is why I live only two miles away,” she says. “Ben and I have pioneering spirits. We have back up cell phones, landlines, and a Facebook Portal—just in case. Redundant systems are good because Ben is my only Ben.”  

Cindy says she has also been structuring Ben’s day with independent living skills training through chores and cooking with the auto-shut-off cooking equipment.  “Ben is growing in confidence and independence,” she says, adding she also encourages Ben to work on his fine motor skills through cooking and art activities in the home art studio.

As they complete the transition, Ben is now in a vocational program three days a week at Friends for Life in Midtown.

Cindy and Ben just recently hired home aide DeJohn Dixon from Home Watch Caregivers in Beachwood for additional socialization, activities, and help completing household tasks. Cindy says Dixon, a former high school linebacker, even has been taking Ben to Lifetime Fitness for weight training, and they go on daily nature walks.

Because Ben is 34 years old and requested a more independent life, a Medicaid individual options waiver covers the services that Ben needs for his health and safety, including Friends for Life and Home Watch.

Cindy says the changes have become easier as the two of them are finally beginning to adjust to their new lives.

Follow Ben Hill's journey on Cindy's blog.

Read more articles by Karin Connelly Rice.

Karin Connelly Rice enjoys telling people's stories, whether it's a promising startup or a life's passion. Over the past 20 years she has reported on the local business community for publications such as Inside Business and Cleveland Magazine. She was editor of the Rocky River/Lakewood edition of In the Neighborhood and was a reporter and photographer for the Amherst News-Times. At Fresh Water she enjoys telling the stories of Clevelanders who are shaping and embracing the business and research climate in Cleveland.