Jonathan Hertlein feels at home in a rural setting. He’s grown up in one, living on his family’s farm in Krakow all his life.
Two days a week, Jonathan, 34, volunteers at Exceptional Equestrians of the Meramec Valley. He cleans the stalls, sweeps the floors in the barn and cares for horse tack so the riders — many of whom are adults with disabilities, like himself — will have a good experience with their therapeutic riding lessons.
Jonathan’s mom, Kathy Hertlein, has long prayed that she outlives her son so she and her husband aren’t forced to make a decision about where he will live and who will look out for him. Jonathan has Down syndrome.
Kathy Hertlein said she had long envisioned Jonathan would go to the Emmaus Homes in Marthasville, but several years ago when Emmaus announced it would be closing the campus and moving residents into group homes within the community, she knew that wouldn’t be the best choice for her son.
Now she is a member of Advocates for Community Choice, a nonprofit organization formed in 2015 with the goal of creating “an intentional community where people with and without disabilities choose to live together in a stable, supportive and faith-based neighborhood.”
The ACC already has a name for the neighborhood it envisions — Bethel Community. Now it just needs to find the right property where it can be developed. Members are looking in the southern Warren County or western St. Charles County areas.
“Our intention is that it be integrated for people with disabilities and people without disabilities,” said Billie Kramme, ACC president and a registered nurse with a lifelong focus in the field of developmental disabilities. “The people who come, regardless of whether or not they have disabilities, they come wanting to be part of this kind of community. So at the get-go it’s supportive, it’s safer, and there will be people who will truly thrive.
“We believe that a setting sets the tone for a person’s sense of self-worth and pride,” Kramme added. “Bethel Community will have people living together from all walks of life, with all different abilities. Such a setting will encourage and allow personal freedom and choice in a supportive environment while continuing to be involved in the larger community.”
ACC will hold a general advocacy meeting Saturday, April 7, at 10 a.m. at Washington Public Library, 410 Lafayette St., Washington.
Anyone interested in supporting the group is welcome to attend.
The group is seeking input from people who are knowledgeable about potential properties in their desired location, real estate development and finance. They also are looking for an attorney who is willing to be involved and someone capable of managing their website, www.roadtobethel.com.
In 2014, the Center for Medicaid Services made sweeping changes to the Home and Community Based Waiver requirements, which is the primary funding source for states in support of people with developmental disabilities, said Kramme. The requirement emphasizes personal choice, access, rights and self-determination.
“Unfortunately, CMS has set narow definitions of what constitutes a community setting,” said Kramme. They are “trying to avoid congregate settings, anything that seems institutional, because of the old horror stories about institutions.”
But that ignores the reality that people with disabilities do well in different settings, said Lynne Unnerstall, an ACC board member and mother of an adult child with developmental disabilities.
“I have researched living options for my son,” said Unnerstall.
“Recently the trend has been to place those with disabilities in cities and towns in established neighborhoods . . . While there are many individuals who are accepted into established neighborhoods and communities, not all are,” she said. “This puts these already fragile folks in an even more restrictive and unwelcoming environment.”
There are good stories of people who have moved to the community and some sad stories too, said Kramme. There are some people who have not done well as a result of the move, because it was just too disruptive to their lives.
“People with disabilities need the choice of where they want to live,” said Kramme. “That is what we are saying. We aren’t saying anybody has to live anywhere, but that they should not be limited if there is a setting that would be more therapeutic for them and that they would enjoy more.”
ACC members point to some people with disabilities who were shunned by neighbors when they moved out of their community setting to group homes in town.
Some neighbors told their children to stay away from them at Halloween, said Unnerstall. Others put up “For Sale” signs and decided to move.
“You get people who may not want to live next door to someone with disabilities, so they’re not always a friendly, welcoming and receptive neighbor,” she said.
“Our point is that (adults with disabilities) need to have the option of living in a community where they are accepted and supported,” said Kramme. “We want every person with a disability to have the choice of where they live without limitations.
“If someone prefers to live on Main Street in Washington, and it’s better for them, certainly they should have that right, but they should not be kept from having the right to live in a rural setting among their peers if they want to,” Kramme added.
Relatives Advocate Choice
ACC is comprised of community advocates and family members who see the need for congregate settings to continue to be a viable option for people with developmental disabilities.
One member of ACC whose brother has developmental disabilities and has been relocated from a community setting on an enclosed campus to an individual home in town said there are many things his brother can no longer do because of where he now lives.
“He can no longer walk out his front door and go visiting everyone, as he often did,” the ACC member said. “He certainly can’t be driving his golf cart around the neighborhood on public streets,” as he used to do when he lived on an enclosed campus.
On a campus, he was used to walking around to visit the other homes and to the offices to visit with the staff. There were group activities that he took part in.
“He walked daily, weather permitting, to and from work (at Temco sheltered workshop in Marthasville). That was good exercise for him,” the ACC member said of his brother
Now any visiting has to be prearranged and transportation provided. Venues have to be found for group activities that used to be held on campus — practice for Special Olympics, dances, barbecues, games and more.
Jan Sullivan, who is the guardian for her older sister, Joyce, said what adults with disabilities miss out on when they are placed in individual homes around the community rather than in a group setting on a campus is freedom and friendships.
“When she moves to a home in the community, she will be more isolated and lose many of the friendships she’s made in the last 35 years,” said Sullivan. “She just can’t hop in her car and go visit them. She is dependent on her caretakers to take her, and if her roommates don’t want to go, she may not be able to go.”
Since organizing ACC more than two years ago, members have been actively working to tackle the legislative issues affecting communities like Bethel. They have been meeting with federal and state legislators of both parties and writing letters.
Several weeks ago, ACC members met with the Division of Mental Health in Jefferson City to discuss how they can achieve their goals.
Already they feel that a great deal of progress has been made. They feel like the lawmakers understand their vision and want to help them.
“They have relaxed some of the subregulatory guidelines, and we expect more,” said Kramme.
The ACC is not tackling this effort alone. Similar groups all over the country are doing the same, said Kramme, noting ACC is part of a national organization, Together for Us.
“Some already have intentional communities created, but some are in the process like we are,” said Kramme. “All of us are working with Congress to try to adjust those things that need tweaking in the subregulatory guidelines, so we are able to do this.”
A law team out of Washington University, which helped the ACC get organized and earn its nonprofit status, continues to advise the group on issues. The ACC also is working with Disability Opportunity Fund, which provides capital and advisory services to organizations working to improve the lives of people with disabilities.
Now enough progress has been made that the ACC is ready to share its efforts with the public so it can gain more traction.
“We have been praying for this for years now, and God keeps giving us little things, positive things coming,” said Kramme.
There currently are more than 100 advocates and supporters on the ACC contact list. In addition to Kramme and Unnerstall, board members include:
Celse Berard, vice president, retired president of Riverview Hospital;
Jennifer Siervo, secretary, who has a master’s in counseling and a brother with developmental disabilities;
Susan Berard, treasurer, retired director of clinical operations at Riverview Hospital;
Don Gaertner; Lee Paridy; and Don Smith.
Anyone wishing to be included can contact Kramme at billie@theRoadToBethel.com or 636-390-3564.
“We welcome parents, guardians, individuals, churches and interested organizations,” said Kramme.
‘Lord, Lift Up the Right Piece of Property’
The ACC has no time frame in mind for when Bethel Community will become a reality. That all depends on what options are presented to them.
“We are coming out and asking the Lord to lead us and to lift up the right piece of property for us, whatever that might be,” said Kramme.
They have been looking for property with around 50 acres or more. If it has some existing housing already that would save some expense of needing to build new housing.
“We are looking to have homes for three or four people in a house and apartments maybe also,” said Kramme.
Obviously, funding is needed to accomplish all of this, to purchase property or build and renovate homes. The ACC welcomes any donations or input from people, businesses and other organizations that share their vision and goals.
“We are people with a passion and we are not stopping until we see this happen,” said Kramme.