On her son's first day of kindergarten, Susan Wallitsch worried that he would never be completely independent.
Her son, Franke, was diagnosed with autism, then placed in a program where he was progressing — he was starting to read and spell — but he wasn’t gaining many language skills. Then came kindergarten.
“I saw all the other kids and I looked at what they were doing, and I looked at my son," she said, and feared he wouldn't "catch up."
“And for me, that was the day I knew we had to start preparing for his future," she said.
Franke is in his 20s now, and preparing for the future means making plans for his care after Wallitsch and her husband pass away.
Wallitsch and her longtime friend, Mary Anne Oemichen, are part of a group of parents who weren’t satisfied with the available options for long-term care. So they formed a group called Home of Our Own and worked to create an affordable apartment complex in New Glarus with 10 units for tenants with different abilities, including autism.
The project, slated for Elmer Road, recently received needed competitive tax credits that will account for around $6.25 million of the approximately $8.6 million project, but HOOO is actively raising funds to hit a goal of $300,000 needed by Aug. 1. Wisconsin Housing Preservation Corporation is the developer of the 40-unit project, which also includes 25 units of workforce housing and five market-rate units.
Wallitsch and Oemichen met years ago; they were introduced by their common pediatrician, who thought the mothers of nonverbal autistic children with significant challenges might want to meet.
They both firmly believe Franke and Amy (Oemichen’s daughter) should have the option to move out of their parents’ homes, where they currently live, and into their own apartments.
“Our sons and daughters deserve to grow up, to embrace as much of the normal activities of life as anyone else can and part of that is moving out of your parents home … and establishing your own relationships with your neighbors and being able to choose your own friends,” Wallitsch said. “Amy and Franke want that as much as anybody else wants that.”
But to live in their own apartment, they would need a full-time caregiver. That’s a great option for some people, but not necessarily for people like Franke and Amy who can’t verbally advocate for themselves, Wallitsch and Oemichen said. NPR found that people with intellectual disabilities are much more likely to be victims of sexual assault than those without disabilities.
“That’s really scary to me as a parent, knowing my daughter can not verbalize with words if something’s amiss,” Oemichen said.
Another option for long-term care are group homes, which Oemichen and Wallitsch said work very well for certain populations, but not for them.
Not only are there long waiting lists, but Franke would likely be unable to live in such a home because he has “significant behavioral challenges and can occasionally be dangerous,” Wallitsch said. Plus, he needs a quiet and calm environment and has a medically restricted diet, which would make it tough for him to watch everyone else getting food he can’t have.
And living in a group home is essentially like living with college roommates your whole life, Wallitsch said.
“I think adults with disabilities or special needs should have the option of saying, ‘I’m done with living that way,’” Wallitsch said.
A DIFFERENT WAY
Realizing these lack of options, Wallitsch, Oemichen and three other families started meeting around Wallitsch’s kitchen table six years ago to start thinking about long-term care and housing.
This has only gotten more pressing as the parents have aged. A few years ago, Wallitsch battled Burkitt lymphoma, a type of rapidly-growing cancer. Despite this worrying diagnosis, the number one concern was finding someone to take care of Franke.
Other members of the core group behind HOOO have also experienced health challenges as they age; one had breast cancer, one is not able to drive, one is a widow.
“It really hit me when I just looked at our group of families,” Oemichen said. “There could have been a really quick kind of crisis point, and that's what we’re trying to avoid by doing HOOO.”
The family conversations started by getting to know each other and discussing what each son and daughter needed.
“If we had been a different group, we might have come up with something totally different,” Oemichen said. “It just so happens that sort of the core group of families happened to have sons and daughters who were primarily nonverbal (and) have significant physical health issues.”
Once they understood the needs and challenges, they explored other housing options across the U.S. to see “what’s already being done,” Wallitsch said. They split up locations, calling or visiting places from Texas to North Carolina to Illinois.
They learned a few things: these options were typically expensive, renting for $2,000 to $3,000 a month. They were also usually built entirely for residents with disabilities, meaning there was not an integrated community. And they often had standards for ability level to qualify.
“In other words, if you needed to have someone change diapers, if you had dangerous behaviors, if you were nonverbal, if you were unable to cook for yourself, you couldn’t live there,” Wallitsch said. “So those were kind of the things we were seeing that would automatically make our folks not be candidates for living in those environments.”
That’s what led HOOO to decide they need to create something new. They wanted affordable, integrated apartments, where level of need wouldn’t be a barrier to participation.
The rental units in New Glarus proposed for those with disabilities are slated to be between about $400 and $500 a month. Social Security provides about $750 a month, Oemichen said.
HOOO also wanted to have a living option in a rural area, so that residents who grew up in rural areas could stay where they were or move somewhere similar.
“I can tell you with my own daughter, you get her in the city for too long of a period of time, we’re guaranteed to have a meltdown. So it’s just not an environment she feels comfortable in for more than a short period of time,” Oemichen said.
Finally, HOOO wanted their housing to be replicated by other grassroots groups of parents. With increasing press coverage of their effort, including a piece in the Washington Post, they've been inundated with hundreds of requests for information: Is there room for my son or daughter? How can my community create this?
“We’ve had some people say, ‘Okay, I live in Long Island, I’m going to move my kid to Wisconsin.’ What we say to those families is, you can do this in your own community,” said Oemichen.
There’s already a waiting list for the 10 supportive units in New Glarus. Mary Wright, president of WHPC said that based on the feedback WHPC has been hearing, “we see there’s a huge need and desire” for more innovative, creative developments like the New Glarus project.
HOOO plans to consult with other interested groups, teaching them what they learned along the way.
“We were inexperienced at tax credits, we were inexperienced at fundraising, inexperienced at grant writing, inexperienced at marketing … I can't even count the number of things I never dreamed I’d ever be doing,” Oemichen said.
They’re already working with five communities in Wisconsin that are in the very early stages of their projects.
HOOO will also be present on the New Glarus property, helping to create community both within the apartment and within the community, Wallitsch said.
The project can break ground in late August or September, meaning it would be finished September 2020. But they still need funding for what the tax credits don’t cover; WHPC is pitching in $500,000, but HOOO is responsible for another $500,000.
They’ve raised $80,000 so far, and need to hit $300,000 by Aug. 1 so WHPC can close with their investors and bank, then HOOO has another year to raise the other $200,000.
They’ve written grant proposals, but are also utilizing 100 Extraordinary Women, an online fundraising platform based in Madison that is encouraging 100 women to donate or pledge $1,000 to the development.
“It’s not just our project that’s depending on this, it’s really the other projects that have contacted us, because they will be using the success of our project as a model,” Wallitsch said.