Susan Wallitsch is the primary caregiver for her 27-year-old son Frank, who is autistic and functionally nonverbal. A few years ago, when she had a health crisis and was temporarily unable to care for him, the solutions she found were limited — and troubling.
She could look for a group home — but most have long waiting lists and would likely not accept Frank because he has behavior problems. She could apply for funding to put him in his own apartment with a 24-hour caregiver — but in that kind of isolated situation, the rate of abuse for adults with developmental disabilities is alarmingly high. Or, she was told, “you take him to the police station and you drop him off and you leave him.”
Those stark scenarios underlined the agonizing dilemma that parents of severely autistic children face: As they contemplate their own old age and mortality, they don’t know what will happen to the children they’ve spent their lives caring for.
In the case of Wallitsch, who is an attorney, the lack of better options spurred her to action. She and another attorney friend, Mary Anne Oemichen, also the mother of an autistic adult, began meeting at a cafe with several other parents of developmentally disabled adult children. Getting together each week over two years, they came up with a plan to build an apartment complex that would offer their children community and a place to grow old.
They took the idea, which they called Home Of Our Own, to a local affordable housing developer, Wisconsin Housing Preservation Corp., which agreed to kick in $500,000, secured an option on a six-acre parcel and retained architects to draw up a plan. They have applied for a low-income tax credit program, and the families are fundraising to try to gather another $500,000 toward the project’s estimated $8 million cost.
“There’s so much interest and so much demand for this type of housing,” said Mary Wright, WHPC’s president, who described the project as “a bit of an experiment.”
“If we can figure out a way to make this happen, we are more than happy to try to do this in other communities and I hope that nationally this can be replicated,” she said.
The need is vast and growing, said Kim Musheno, vice president of public policy for the Autism Society of America. In 2018, the CDC determined that about 1 in 59 children is diagnosed with autism spectrum disorder, and over the next decade, an estimated 500,000 of them will enter adulthood, she said, adding that nearly 424,000 are on waiting lists for residential services.
In the face of this, Musheno said, more parents around the country are starting their own initiatives.
“The federal and state governments are falling way short of the need for accessible, affordable residential options for people with autism and other developmental disabilities,” she said. “I like this project because the parents are working to ensure that the housing project is integrated in the community so that the residents are not isolated. Most people with autism and other disabilities do not want to live in institutional-like settings. They want self-determined lives just like everyone else.”
The first phase of the complex, to be built in rural New Glarus, Wis., would have 40 units, a quarter of which would be reserved for adults with developmental disabilities such as autism or cerebral palsy, who would live there with caregiver assistance. The rest would be affordable housing for people earning $22 per hour or less, who have limited housing options in the area.
The founding families insisted on several points: Home Of Our Own would be open to people with disabilities at any level of severity; income would not be a barrier; and it would be an integrated setting in which their children and others with disabilities would live in a community with people who do not have disabilities. The complex would have communal spaces, gardens and walking paths, and the founders envision a range of people, from young workers to retirees, living there.
“In the end, everybody wants the opportunity to be independent and to be social and to be part of a community,” said Oemichen, whose 25-year-old daughter Amy is functionally nonverbal.
The adults with disabilities would pay rent, which will be scaled to their income (along with holding jobs, they also receive Social Security), and qualify for home care through Medicaid. But rather than being isolated in apartments with a caregiver and little oversight, they would live alongside neighbors who knew them and could speak up if anything seemed amiss.
The development might also incorporate special design features such as doubling up on drywall to accommodate residents who are sensitive to sound, installing blackout shades for those sensitive to light, or adding a safe room for caregivers who need to separate themselves from residents who become aggressive, Wright said.
In March, the group will learn whether it got the tax credits. If so, they anticipate opening the facility by the fall of 2020.
“Part of our role will be to build the community and create opportunities for people to spend time together,” Wallitsch said, adding that her son is excited about the prospect. “To live where other people live, people closer to his own age, to make new friendships, to live somewhere other than where his mother and father live.”
Frank communicates by pointing to letters on a letter board and spelling words. Recently, listening to his family discussing the project, “He was really thrilled about it and he spelled: ‘SHOUT OUT,’” Wallitsch said.
Unsure whom that was directed toward, she asked if he meant it for his sister or his caregiver. It was neither of those. Frank returned to the letter board.
He spelled: “SHOUT OUT MOM.”