Becky and David Cox, Washington, have two children — Drew, 15, and Kate, 9.
Drew, who was born with Down syndrome, likes routine and familiarity, so much so that during the school year, he asks if he can go to class on Saturdays.
“He loves to be active and helpful, and has a smile to light up the room,” Becky Cox said. “When he is away from friends at school, he searches out people to be with. He has taken to riding his bike up and down our neighborhood waving to stopped cars or riding right into driveways so he can say hello.
“We are blessed that our neighbors are so kind, stopping with conversation and care.”
Kate likes to look out for her brother. When she was 6, she asked her mom if she will take care of Drew as they get older.
“She already knew that Drew will need support beyond what he can do for himself,” Cox said.
When the Coxes look ahead and think about the type of community where Drew as an adult would thrive, their dream scenario looks like Bethel Hills Community, a 40-acre faith-based pocket neighborhood proposed by Advocates for Community Choice, a 501(c)(3) nonprofit corporation founded in 2015 that provides supportive housing, social and other opportunities for adults with and without developmental disabilities that enable them to live, learn and worship together.
Members have been working toward that goal for the last five years and now are on the cusp of making it a reality. All they need is to find the right property and the funding to purchase it, Billie Kramme, ACC president, said.
In the next few days, ACC will be finalizing the Bethel Hills Community layout, housing designs and business plan. Next, members will kick off a fundraising effort to be able to purchase property.
The group already has a sizeable start, including a $50,000 matching gift from a donor who wants to remain anonymous and another 50 donors who have each given $1,000.
Families like the Coxes couldn’t be more excited about the progress that has been made.
“David and I see a great need for Bethel Hills Community,” Cox said. “For both of our children, we work to provide purpose and routine, safety, community and relationships, meaningful work, anchored by faith and God. All of these things are our dream for our children. We see that Bethel Hills is creating that place, an inclusive place.
“If you have heard the phrase ‘it takes a village,’ this could not be more true than with Drew.”
Although the decision of where Drew will live as an adult is years away, Cox said her daughter Kate already loves the idea of them both living at Bethel Hills, where she can be a support for him and others with disabilities.
What Bethel Hills Would Look Like
The housing options at Bethel Hills will include duplexes, one-bedroom units and three- and four-bedroom homes that would be big enough for a family or as an independent supported living (ISL) home where three to four people with disabilities could live, Kramme said.
The homes would be laid out in a semicircle or U-shaped pattern with the front yards facing each other to create a large shared green space and driveways and garages at the back. The street would run behind the neighborhood, keeping vehicular traffic out of the way.
Lynne Unnerstall, whose son John currently lives in an ISL home and who serves on the Missouri Department of Mental Health Commission, said she envisions the residents of Bethel Hills holding parades, dances, picnics . . .
“I can see them getting together on a summer evening, having a big barbecue and putting up a sheet to have movie night outside in the common area,” she said.
ACC would build the homes and residents would lease or rent them from ACC and the length of the lease would be open-ended, Unnerstall said. They could remain there as long as they wanted to and didn’t violate any of the terms.
Although the ACC hasn’t found the right property for Bethel Hills, members say an ideal location would provide 40 acres in the Dutzow-Marthasville-Washington area.
It could be a mix of open and wooded land, and if there were one or more buildings already standing, that would provide a wonderful start, Kramme said.
Depending on the design and location, pre-existing buildings could be used for office or meeting space or could be modified for housing.
Unnerstall said the ACC is willing to consider any property an owner might bring to them as an option.
More Support for Bethel Hills
Conor Howard, who is 21 and autistic, currently lives with his grandfather, Ross Malone, in a rural setting in Union, but a smile breaks out across his face at the mention of Bethel Hills and the possibility of living there someday.
“It sounds great!” Howard said. “Everybody would be friendly to each other and live close together, so I would have friends.”
Where he lives now the neighbors are too far apart for him to see on a regular basis.
Malone said one of the things he likes about the proposed Bethel Hills community is that it will allow both people with and without disabilities to live there.
He also likes that there will be job opportunities within the community. Howard has talked about running a golf cart taxi service around the neighborhood to get people to where they need to go.
“Other communities like this have chickens as a business,” Malone said. “Conor is great at raising chickens and all the work that has to be done with that. There are all sorts of productive, money-generating jobs that can be done at the community for people who want them.”
Leroy Parody, whose late brother lived on the former Emmaus Homes campus in Marthasville for more than 50 years, said there were great benefits to that arrangement.
“There is more sense of community and home,” Parody said. “Residents can visit back and forth between the houses as they want.
“A community is much safer and allows the residents to roam around more. There can be community activities — a ballgame, potluck picnic, outdoor activities right outside their door . . . caretakers can help each other in an emergency.”
Adults with disabilities who live in ISL homes can be more isolated, Parody said.
Don and Patty Smith, Marthasville, whose adopted son James lives in an ISL home, agree. Although James is happy, they say he has lost some of the freedoms he had when he lived on the Emmaus Homes campus.
“The residents would walk to each others’ homes, and James could walk across the street to work,” Patty Smith said.
“Now he lives on a cul-de-sac in a suburb, but he can’t leave without someone being with him or they all go in the van together,” Don Smith said. “But if he was in a rural setting, like Bethel Hills will be, he could wander around on his own more.”
He sees the difference whenever James spends time in a more open setting.
“When he comes to visit us, he goes to my office first to see if I have any blueprints on my desk or if I was working on something outside, then he’ll disappear because he went outside checking to see what I’ve been working on,” Don said. “He doesn’t have that freedom at his ISL house in town.”
Members of the ACC are quick to say they are not trying to recreate what the Emmaus Homes campus was.
“At Bethel, if you need a service provider, you will bring your provider with you,” Unnerstall said. “So any service provider can come with their clients.”
And the community will be open to anyone who wants to live there whether they have a disability or not.
“If you abide by the rules and agree that you want to share your lives with people with disabilities, you are welcome,” Unnerstall said.
The reason that is important is that some people with disabilities who have moved into ISL homes have not been welcomed by their neighbors, Kramme said. In some cases they have even been shunned or neighbors have opted to move because they didn’t like being close to an ISL home.
“The goal is to offer a totally inclusive community where people could come into the community, and people in the community could go outside of the community to eat at restaurants, go to the movies, shopping, the YMCA, doctor visits . . . whatever. It will not be a confined community,” Kramme said.
“It will be just like living in a subdivision anyplace, only people with disabilities who are living there will know that they are going to be safe and taken care of, and they aren’t going to have to worry about neighbors being upset by them,” Unnerstall said.
Need Is Increasing
Kramme describes Bethel Hills Community as “a missing piece” for adults with disabilities who live in this area. It’s not that ISL homes are bad, but people with disabilities should have a choice in where they live, she said.
“In Franklin County alone there are more than 500 families who have loved ones with disabilities living at home, like Conor (Howard),” she said. “When the parents or grandparents get too old or pass away, a sibling or another relative has to take them in, but if they don’t have that, where do they go?
“Having an option is good, and people need to have a choice,” Unnerstall said. “I know people who wouldn’t think of living in the country, but there are others, like me, who don’t want to live in a city. So there needs to be options for people.”
Malone believes once Bethel Hills is completed it will become a model for other communities across the country.
“This isn’t just something for now and the need will go away,” he said. “The need is increasing.”
Goal Is $250,000
The ACC has set a goal to raise $250,000 by the end of the year. Those funds will be used to purchase property for Bethel Hills, but the need for funds will be ongoing, since the group will need to develop the property and build housing.
“That may have to be done slowly,” Don Smith said.
Kramme believes once the ACC finds the right property and is able to purchase it, that will jumpstart the fundraising.
“We have donors who are waiting to contribute until we have the property,” she said. “It’s also difficult to get grants and foundation money until you own property.”
To learn more or to make a donation, contact Kramme at 636-390-3564 (call or text) or by email at email@example.com.
The first 100 people who donate $1,000 or more will be recognized as Founders of Bethel Hills and have their names inscribed on a plaque at the property.
Consider This . . .
• There has been a 300 percent increase in autism in the last 12 years (includes more diagnostic techniques) and a 17 percent increase in developmental disabilities diagnoses.
• 28 percent of adults with developmental disabilities live in poverty.
• Adults with developmental disabilities are more likely to live sedentary lives. One in three report no exercise in the last 30 days.
• 39 percent of adults with developmental disabilities report being lonely.
• There has been an increase in sexual assault in the developmental disability population, and only 3 percent are reported.
• More than 25 percent of family caregivers are over the age of 60.
• 115,000 families are on residential waiting lists for ISL (independent supported living).
• 27,000 adults with developmental disabilities have to reside in nursing facilities.
• In Franklin County, there are 540 adults with developmental disabilities living at home.
As reported by HealthResearchFunding.org.