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VOL. 45 | NO. 3 | Friday, January 15, 2021

‘What happens when we’re gone?’

Aging parents seek solutions for their adult children with intellectual disabilities

By Margaret Sizemore

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The question settled with a disturbing whisper in Pat and Charlie Cooper’s hearts once the emergency medical treatment was concluded and their 5-year-old daughter, Susan, was diagnosed with encephalitis, a swelling of her brain.

“What happens when we’re gone?” The question would rise up through the next 30 years whenever another grand mal seizure hit her slim frame, keeping her on the fringe of being included in childhood parties and teen outings and, eventually, ruling out college.

In 2007, when Susan was in her early 30s, the Coopers decided to make a full-on, heartfelt run at creating a satisfactory answer. They, along with three other families whose children had mild developmental disabilities, soon formed a nonprofit organization with the goal of building the first of several residential complexes where adult children like their own could live independently in a safe, supportive environment close to neighborhood amenities.

Their nonprofit, Springboard Landings, got a tremendous boost in November with the $2.1 million sale of a 65-acre parcel of property in Murfreesboro that a sympathetic anonymous donor had given the nonprofit a few years ago.

“The sale of the land is a huge development,” Charlie Cooper says. “That’s our next step now, it’s to find a location. That’s our priority now.”

As envisioned, Springboard would be somewhat unique in providing a living option for adults at a different level, many who already hold jobs, drive their own vehicles and aspire to independent adult life. And despite 2020 being a year crippled by the COVID pandemic, the people working to bring about this new living option are excited and optimistic they are on verge of making it happen in the very near future.

Once that land is acquired, a flagship building is planned that would have about a dozen units and a live-in manager, with a common area designed to foster interaction and community among residents. Additional complexes would be similarly built in the future.

“Well, you agonize how your son or daughter is going to live after you’re gone, and then we’re a good example because we are growing old, you know. I’m 83 and Pat is 81,” Charlie says. “But it’s that worry. What happens when we’re gone? What happens when we’re gone?”

Pat and Charlie Cooper with their son John and daughter Susan. The Coopers are in the process of opening Springboard Landings, a residential complex for adult children with special needs.

-- Photo By Michelle Morrow | The Ledger

There are a number of facilities locally and nationally that offer services to adults with intellectual and developmental disabilities who require more direct, specialized care. The Coopers researched and visited several residential facilities in different areas of the country, but none were a right fit. Older siblings also assured their parents they would take care of their sister, “but it was apparent to us as parents that that was not the best solution for Susan, nor was it the best solution for the family member,” Pat Cooper explains.

“But what we did not envision was how long it would take to make something like this come to fruition,” she adds with a chuckle.

Springboard Landings’ four founding families were drawn together by weekend outings that started in 1993 through a group called Springboard Network. Though not affiliated, it inspired the nonprofit’s name and served as a seed of sorts.

Pat Cooper told of seeing a woman on a Nashville noontime television show who wanted to connect with other parents of developmentally disabled children after encountering a similar group in Boston. The Coopers went to an organizational meeting and the local network took shape, continuing to meet weekly for 27 years until the 2020 pandemic hit.

“We witnessed over the years how the group looked forward to and thoroughly enjoyed their weekend gatherings, how they totally accepted each other and learned from each other,” Pat Cooper says. “In their workplaces they often did not feel understood and usually were not included in after-work activities.”

Springboard officials, citing a 2007 state developmental disabilities task force report, say as many as 40,000 Tennesseans have developmental disabilities that are not intellectual, and they are capable of greater independence.

“They’re employed, a lot of them can drive, they just have a different set of needs,” says John Cooper, who is the third of the Coopers’ four children. “Intellectual disability, they just have greater needs and there’s some programs in place for them, but we’re looking at really giving a voice to mild developmental disability that just has never had a voice.”

“An easy way to boil it down is that 1.65% of the population in the U.S. has a developmental disability and, out of that 1.65%, only 0.65% have a developmental disability without being intellectual disability. So, our focus is on that 0.65%.”

John Cooper is serving as president of Springboard Landing’s board. He lived and worked in Hong Kong for five years as an account manager for Critical Mass, a Canadian digital design and marketing company. He returned with his company to the Nashville office in 2018 and became more intimately involved in his parents’ vision.

Susan Cooper was diagnosed with encephalitis at age 5. Her parents are working to launch Springboard Landings to ensure she would have a place to live after they are gone.

-- Photo By Michelle Morrow | The Ledger

While in Hong Kong, he says, he encountered the Nesbitt Centre, a facility for adults with learning disabilities that fostered their independence and potential. It made a deep impression.

It “was very touching for me to be on the other side of the world and to see that this isn’t just in Tennessee and to see the challenges and the successes that they were having in Hong Kong. So, I tried to learn as much as I could from what was going on there,” he adds.

John Cooper also said he noticed similar projects springing up in different areas of the United States and Nashville, one being Our Place, an inclusive housing community with a waiting list. David Bers, the son of one of Springboard’s founding families, opted to live there.

David and his parents, John and Mary Bers, are featured voices in the mission video on Springboard’s website and YouTube channel. In the video, David speaks about the loneliness and misunderstanding he has encountered as an adult with a mild developmental disability.

“We’ve run into that several times, loneliness,” Charlie Cooper says. He recalls another Springboard supporter whose adult disabled daughter, in a bid of independence, moved into an apartment.

“She lived for a year but she got so lonely she went back home,” he continues. “Loneliness is a big thing because you put them out in apartments and … people don’t invite them to go to do anything else. They’re really nice to them and don’t bother them or anything, just courteous to them, but no one invites them to participate in events and things.”

Susan, the Coopers’ youngest daughter, is now 46. She was 5 when her brother John found her unresponsive, sitting on a couch at home. The flurry of emergency care, which included immediate surgery with a faint hope of survival, settled into a diagnosis of viral encephalitis. The swelling of her brain meant numerous grand mal seizures over 30 years and a lifetime of anticonvulsant medications that slowed her thought processes, her mother says.

Despite everything, Susan was determined and made it through school surrounded by supportive people, graduating from Father Ryan High School in Nashville in 1993. But her seizures were still active, which ruled out college. She worked at The Edge, a hair salon in Brentwood for 25 years, washing dishes and sweeping floors. Last year, she moved into a new job at Smoothie King in Green Hills.

Susan says she’s looking forward to living on her own, “but at the same time I know I’ll have a hard time getting used to being on my own without any help except the manager.

John Cooper, Susan’s older brother, president of Springboard Landing’s board. He has been involved in helping his parents launch Springboard Landing since returning from Hong Kong in 2018.

-- Photo By Michelle Morrow |The Ledger

“I’m looking forward to having some more friends … I’m looking forward to coming together with people that are like me, that I’m more acquainted to, that I can relate to. They can understand me, my disabilities.”

Father Mark Hunt, a priest with the Catholic Diocese of Nashville who has served on the nonprofit’s board for about two years, says he has seen the need for this kind of housing option while serving on three of the diocese’s boards that deal with properties and special populations. He also has past experience working with developmentally disabled residents at a L’Arche community in Mobile, Alabama.

“Through my ministry as a priest, I know families that do have an adult child with special needs and I’ve worked with them on other things and that’s the one thing that they’re concerned about,” he says. “The more I tell the story to people, the more I have people come up and say, ‘I know someone who could benefit from this,’ and it’s either a relative or a friend or a client or a neighbor; they immediately latch on to a need.”

Hunt sees this as a moment for Springboard to carefully consider the potential long-term effects of the choices now being made.

“So, I’m excited but I’m also like, OK, now we’ve got to be even more careful, this is not just some idea on a piece of paper. It’s an actual reality and we’ve been entrusted now.” Hopefully, within a couple of years, “we’re going to actually have a piece of property and we’re going to be in the process of building.”

Springboard Landing’s Board Treasurer, Ward Chaffin, whom John Cooper smilingly recalls as a classmate in first grade, tells of the land search in the group’s most recent newsletter: “Land – A minimum of 2 acres in Nashville within a short distance to shopping and jobs. Donated or discounted land is the request. The hunt is on!”

John Cooper elaborates: “We’re putting a lot of heavy focus on the Bellevue area but we are open to Nashville, Davidson County, Williamson County. The importance is that it is not isolated,” he adds. “We want it to be in the community, we want it to be within distance to shopping, entertainment, employment. It doesn’t have to be on a bus line but it would be a plus … and a safe environment. It’s important to be in a safe environment population.”

Despite the difficulties of steering through an uncertain year paralyzed by the COVID pandemic, the possibility that a groundbreaking is in the not-too-distant future is front of mind for most everyone involved in the effort. Charlie Cooper spoke of many people who encouraged and supported the organization through the years.

One early supporter is storage businessman Doyle Monday and his wife Susan, who offered a $10,000 matching contribution to Springboard in 2012 if it could inspire others to also give. And give they did. In addition to individual contributors and nonprofit mainstays such as Amazon Smile and Kroger Community Rewards, Springboard also counts on The Big Payback each spring to fund its efforts.

The 65 acres of land in Murfreesboro, which finally was sold for $2.1 million to homebuilder D.R. Horton in November 2020, took a few years moving through interested buyers and city zoning considerations. The land was donated in 2016 by a woman who wanted to remain anonymous, the Coopers say.

They had immediate interest from a potential buyer in Memphis who offered $3 million for the land for use in his trucking operation. Near the same time, the city of Murfreesboro approved its 2035 Comprehensive Plan, which precluded that kind of industrial use for the area where the land was located.

“Yeah,” Susan exclaims. “That was a very big turn-off, a great disappointment!”

John Cooper smiled affectionately at his little sister. “Susan was not pleased, the boss was not happy … of course, the price was lower than the original $3 million offer, but it was $2.1 million. So grateful. It was just amazing.”

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