The dust was flying on a muggy Saturday in June as a group of volunteers began ripping up carpets, pulling down cabinets and even knocking down some of the walls of a house in Gardner.
In a few months, this 1960s ranch house will be home to five people, with the help of a little-known organization called Friends of Johnson County Developmental Supports.
A lot has to happen to this house in the interim. The renovation will widen doorways, smooth down thresholds and add a track system to the ceiling to help move people with limited mobility around.
It’s one of 12 homes Friends of JCDS has purchased and renovated to help people in Johnson County with developmental disabilities. They’re fixing up this house in Gardner with the specific purpose of helping clients who are dealing with Alzheimer’s disease and other dementia.
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“Friends of JCDS is a little bit different than your typical friends organization,” said Janel Bowers, director of development for Friends of JCDS. “We have a very directed mission. A lot of it is providing affordable, accessible, safe housing.”
Johnson County Developmental Supports is part of the county government and provides assistance and various programs to help people in Johnson County with developmental or intellectual disabilities. Friends of JCDS works with JCDS, but it’s a separate entity with a 501(c)(3) nonprofit designation. Friends helps JCDS in various ways, but the houses are one of the most visible.
“It’s become really clear we can’t stop at one more house, whether that’s another house that’s specific to address Alzheimer’s and dementia, or quite frankly, just another house that’s accessible and affordable,” Bowers said.
All the houses the Friends operate were existing structures that the group then renovated to make accessible for their purposes. So far, they haven’t had to build a house from scratch, but Bowers said it’s tough to find ranch houses with four or five bedrooms.
Because this Gardner house renovation has an Alzheimer’s focus, the workers are taking certain design features into consideration, such as maintaining consistent flooring throughout the house whenever possible.
Philip Sloane, co-director of the Program on Aging, Disability, and Long Term Care at the University of North Carolina-Chapel Hill, explained it this way: “Changes in flooring can be perceived as changes in height. Let’s say you have a mat at the entrance, you want a contrast so they know what it is. If you change color of the floor, someone who has low vision will think there’s a change in level.”
One of the features of the Gardner house will be a garden that offers residents the chance to be outside and have different experiences to stimulate the senses, whether it’s tactile sensations or smelling different fragrances or even looking at butterflies.
“You still want to stimulate that brain,” Bowers said. “You still want to arrest that progression as much as you can.”
Having a stimulating environment can be important for slowing down the effects of Alzheimer’s.
“It’s much easier for the average person with Alzheimer’s to feel at home in a home,” Sloane said. “I personally like the model a lot. It’s challenging to make it cost-effective.”
A few of the Friends homes have basement apartments for individuals who don’t have as many accessibility issues as others but still might need the support of being in a house where there’s someone available to help at any time of the day.
The Switzer House at 8525 Switzer St. in Lenexa is the only one still owned by JCDS. The Friends organization owns all the other houses.
When the new house in Gardner opens, the Switzer House will close, leaving all the housing in the hands of the Friends group. The new house will become home for five individuals, some of whom, like Steven Gutschenritter, will come from the Switzer House.
Gutschenritter lived at the Kansas Neurological Institute in Topeka for about 10 years before a change in state policy meant that big institutional residential programs had to shut down.
His parents, Tony and Linda Gutschenritter, had been living in Lenexa for several years and were thrilled when a caseworker found a place for him at the Switzer House. That was almost 21 years ago.
“It’s such a more active, normal participating lifestyle,” said Tony Gutschenritter. “For so many years in Topeka … everybody just sat around, no activity, nothing.”
The change in atmosphere from the institutional setting to the home setting is palpable.
“When Steve was in the institution, we did not realize how much he really didn’t like it until he got out of there, when he was transferred to Switzer House … At Switzer House, he’s an individual,” said Linda Gutschenritter.
Steven needs a wheelchair and doesn’t talk, but he’s known for his hearty laugh at Switzer House. Although he’s nonverbal, his parents say he’s enjoyed being around the clients with dementia because their conversations make the house more lively.
“He’s ornery,” said Tony Gutschenritter. “He likes to play ball. You give him a ball, and he’ll throw it. If you’re on his right side and you give him the ball, he’ll give it to you a couple of times, then he’ll start throwing it on the other side … and he’ll just laugh.”
Having his son live in the community, rather than in a large institution, seems to be beneficial to everyone.
“One of the best things that has come out of moving these people into communities is the fact that people that don’t know people with disabilities … they’ve learned to interact with them, and they’ve learned that they’re not somebody to shun or fear,” Tony Gutschenritter said. “It used to be people would look the other way and run. I don’t know if they were afraid or didn’t know how to deal with those type of people.”
Perhaps what the Gutschenritters like best about the house is the staff.
“The staff is always trying to do new things. It’s not status quo. They’re always trying to experiment to see if the clients will like something,” said Linda Gutschenritter.
About 120 clients receive residential services from JCDS, and as of this December, 51 of them will be in one of the 12 Friends houses. There are always staff members present at the houses, but the number can vary throughout the day, depending on the needs of each house’s residents.
Chris Johnston, 46, has lived at a different Friends of JCDS house on Bond for five and a half years, and his mother, Marcia Tammeus, said that well-trained staff members are the core of what they’ve liked about the house.
“They have been very cooperative,” she said. “They don’t mind partnering with me.
“It’s a team effort. I think Chris thinks of it as another family.”
Johnston, who functions on the level of a 4- or 5-year-old, Tammeus said, enjoys the social aspects of living in the house.
“Although he could never live on his own, and he needs 24-hour care, he likes having his own room,” Tammeus said. “I just think (living in the Bond House) gives him a sense of independence that he can’t articulate.”
The friendly atmosphere in his house and at the JCDS workshop, where JCDS clients do tasks such as stuffing boxes, shredding paper or creating artwork, fits his personality.
“He wants to hug people. … he likes to tell all the girls they’re pretty and the men they’re handsome,” Tammeus said. “The interesting thing (is) that someone who functions at that cognitive level can really learn a job. They take pride in the work they do. … I think it’s important not to box them into the same task indefinitely. They need stimulation like anyone else.”
When it comes to Chris’ care, Tammeus said she’s thinking with a long-term view.
“Part of the reason that I’m for as independent living as possible is that I’m not going to be around forever,” Tammeus said. “I know that he’s emotionally adjusted, physically safe and he’s happy.”
Chris, who has a seizure disorder with developmental delays, previously lived at Faith Village in Lenexa for 20 years, but Tammeus said they wanted to have all the services Chris receives under the same umbrella.
Tammeus, like Tony Gutschenritter, likes the way the JCDS houses integrate the clients into the community.
“These are citizens of our community and ought to be treated as such and not cordoned off or living in an enclave where everybody’s in the same boat they are,” she said. “I think it’s good for the whole community. It creates a normal community, by having people of different abilities all mixed together. It’s a wonderful kind of diversity.”
Geneva Miller has two brothers living in Friends houses, Gene Cummings, 68, and Jerry Cummings, 65.
“They walk, they talk, they dance, but they are as innocent as preschoolers,” Miller said.
Both have dealt with lifelong brain damage. Most of their lives, they’ve lived with family, but at a certain point, it was too difficult to meet their needs at home.
“The strong point of JCDS is the enormous efforts the Friends put into fundraising and overseeing the houses and the incredible hiring practices that the county has for JCDS. They have very high standards — the highest in America that I’ve seen, and I’ve lived coast to coast,” Miller said.
Jerry Cummings lives in the Bond House and spends his days at the JCDS workshop.
“My brothers altogether have lived in three houses (through JCDS), and the personalities were matched beautifully,” Miller said.
Jerry Cummings likes to look out for his friends at the house and the workshop.
His best friend has seizures, Miller said, and her brother does his best to watch his friend for signs of seizures and alert staff members if he sees anything.
“My brother is a good man,” Miller said.
Gene Cummings, who also has dementia, lives in the Switzer House and will move to the new house in Gardner when it’s ready. One of his favorite activities is to go grocery shopping with JCDS staff. He also has a sense of chivalry.
“When they first lived with JCDS, it would be women (staff looking after them) on the overnights. … Gene would say, ‘I don’t think it’s right for a lady to be out here alone by herself, so I’m going to stay up with you,’ and it was very difficult to get him to go to bed,” Miller said.
Getting to know and spend time with the clients is the key to the whole operation for Chad VonAhnen, executive director of JCDS and board president of Friends of JCDS.
“To me, when you get a chance to interact with clients we support, that’s what it’s all about, at the end of the day,” VonAhnen said.
The houses aren’t the only option JCDS clients have for housing assistance. Many other clients live in independent apartments or other facilities, where they might get daily or weekly help from aides provided through JCDS. That help could come in the form of a trip to the grocery store or lessons in life skills.
“That person may have a community-living person that comes in three days a week just to make sure they’re OK,” Bowers said. “Maybe one night they come in and work on their budget and balancing their checkbook.”
For clients with more extensive daily needs, especially concerning mobility and adaptive technology, the houses are vital.
“They need to have someone help them get out of their wheelchair and be placed into a bed. They may need to have help eating, either through a food tube, or they just need someone to pick up that spoon and bring it to their lips,” Bowers said.
Friends of JCDS gets the money for renovating houses through donations and grants. Bowers said she’s waiting to hear whether they’ll get a large grant through the Federal Home Loan Bank of Topeka through its affordable housing program. The money the Friends collect isn’t just for building new houses but also for maintaining the houses that are already operating.
Over the years since the Friends houses started, the needs of the developmentally disabled community have changed. In the early ’90s, Bowers said, the average lifespan for someone with Down syndrome was 30 or 40 years.
“We weren’t seeing a large amount of individuals with intellectual and developmental disabilities process through aging, because that was it. Now, because of improvements in (medical care), individuals are living longer.”
What that means in terms of supporting these individuals is that Friends of JCDS is putting more resources toward future needs of an aging community.
In people with Down syndrome, for example, “dementia and Alzheimer’s onsets earlier and onsets more rapidly,” said Bowers. “There are some studies that show (the number of) individuals with Down syndrome (who) will have Alzheimer’s … (is) like 99.8 percent.”
Knowing that, they’re anticipating greater needs from county residents in the future, Bowers said.
“We know that maybe their physical needs are going to grow, so you have to keep that in mind that we’re going to have to keep going.”
About Friends of JCDS
▪ The nonprofit was founded in 1990.
▪ In 2015, 320 volunteers contributed their time.
▪ 46 people lived in Friends housing last year.
▪ The Friends’ operating budget for 2015 was $348,433.
▪ 80 people received help with assistive technology.