Monday, February 4, 2019

How these parents are building a home for their disabled adult children

Occasionally, the what-will-happen-to-him anxiety flares up, as happened recently when I watched the transit bus arrive for a woman with Down syndrome in our neighborhood. She lives with her elderly mom, and takes the bus to her job daily. I wondered which of her siblings would be there for her when her mom passed. Then I started wondering, once again, where Max might someday live. Once, I found the group home closest to where we lived, parked outside and sat there, as if that could tell me anything.

I was heartened to recently read an NPR piece about a group of parents in Wisconsin who have banded together to build a community for their adult children with disabilities, Home Of Our Own (HOOO). "If we wait for our government and public institutions to provide homes and security for our children, they will never get what they need and deserve," says Susan Wallitsch, an attorney and mom to Frank, 27, who has autism. Like many parents of adult children with disabilities, she faced grim prospects for housing her son. Group homes have a wait list. Seeking funding to set Frank up in an apartment with a caregiver would isolate him. And so, she and a group of fellow parents in the same situation banded together and made things happen. Amazing things.

Frank, center, with his parents Mark and Susan at right and Merissa, a favorite support person, to the left 

Six years in the making, HOOO is not housing complex but an integrated, intentional rental community. "Integration, social interaction and sharing of time and talents is the underlying premise behind this project," says Susan. "The idea is to encourage and facilitate as many planned and natural interactions as possible, so that residents feel like they are truly part of a larger, cohesive community." This integration, she says, will be "an antidote to loneliness and isolation." By integrating different populations, "the quality of life for everybody will be enhanced." 

Phase One of the community in New Glarus, WI, will consist of 40 units—townhome-style independent apartments with one, two and three bedrooms. Ten units will be dedicated to people with autism, cerebral palsy and other disabilities who require substantial support. The other 30 units will be available to working Wisconsin residents who are in need of affordable housing and active seniors, and possibly, Wallitsch says, adults with disabilities in need of less support. Common areas will include a community room with a kitchen for the entire community; a smaller, sensory-adapted community room; walking paths; raised beds for communal gardening; a picnic/grill area; and a shared laundry room.

Rents at SOOO will range from $408 to $1250 a month, with the lowest-priced units subsidized and earmarked for people with disabilities. A local group, Integrity Residential Services, has signed on to provide residential support services. Residents will be able to utilize state-administered Medicaid dollars to hire service providers of their choice. The hope is to break ground for HOOO in the summer of 2020.

The idea for the community was hatched when Susan, attorney friend Mary Anne Oemichen (who also has an adult child with autism), several other parents and a caregiver started meeting at a coffee shop. "All of our families are from local communities and wanted their loved ones to remain in a rural setting close to home," says Susan. "The idea for a complex I think was first suggested by our caregiver, Kim, based on a model she was researching called The Generation House," she continues. "We were all looking at different models from the U.S., France and Scandinavia, and all contributed our ideas until we felt we had a great, workable plan. We also spent time visiting co-housing apartments, group homes and larger facilities such as St. Coletta and Bittersweet Farms."

What followed was many, many hours of project development. Things fell into place when the group succeeded in getting the nonprofit the Wisconsin Housing Preservation Corp to come onboard. It secured an option on a six-acre plot of land, got architectural renderings and contributed $500,000. Southwestern Wisconsin Community Action Program is serving as the umbrella and fiscal agent until HOOO is approved for 501c3 status (as a nonprofit). The cost of the project—$8.5 million—will be largely financed, says Susan, "by federal tax credit financing, utilizing investors who will receive the credits in exchange for their investments." There is $1,00,000 gap between the anticipated costs and what the tax credits will cover. The families are fundraising for another $500,000, and are up to $70,000. 

The group now consists of some15 families, grandparents and Kim, the caregiver. To date, more than two dozen people and families have expressed interest in residency at HOOO. "We have also been contacted by about 50 families nationwide interested in learning more about the project and possibly starting something similar in their community," says Susan. The HOOO's project is replicable across the country, she notes, "because it leverages federal tax credit financing combined with private fundraising to fill the gap, and offers affordable rents."

I asked Susan what advice she'd have for parents of children nearing adulthood who are concerned about their futures, and she generously outlined the planning process that went into creating HOOO. 

• First, meet weekly with a group of dedicated people with diverse skills. Charge modest monthly dues, $5 to $10 dollars per person. You will need money for photocopying, postage, printing and some travel and conference fees. This way one or two families don't get stuck paying for everything. • Really get to know the dreams and needs of the differently abled people represented. 
• Divide up research of existing models and have each person share what they learn about the model, what they like and don't like. Develop a clear and detailed vision as a group that is wonderful for everyone, don't compromise on anything at this point.  
• Find a well established non-profit with experience in housing to act as a fiscal agent and mentor—this was our first really big break.  
• Locate the community you would like to build in and target a parcel of land. Approach the Plan Commission of that community and request a letter of "concept approval." Having identified a good building site and having a letter of concept approval made our project very attractive to our developer.  
• Now you are ready to approach a developer. This is a very specialized area and not something most for-profit developers do. There are specialized developers in every state that work with tax credits.  You will need help in locating these developers to pitch your project. We can help, or if you are working with a great nonprofit, they can help.  
• Tax credits are never enough to complete these projects. The difference between the cost of the project and the potential tax credits is called "the gap." Be prepared to raise substantial funds to help your developer fill "the gap." This is what our $500,000 capital campaign will be used for; there is a "donate" button at the top of the HOOO Facebook page, and contributions are welcome.
• Your developer should gain site control, do a feasibility study and hire architects for initial renditions. 
• Now is a good time to find an organization willing to provide the support the differently abled residents may require. Residents don't have to use this agency, but we are constantly asked who will support the residents and having a firm answer is essential to plan approval and tax credit competitiveness.  
• When you have these things, your developer, architects and you will approach the Plan Commission for actual approval of the project. When approval is granted, your developer will apply for tax credits and you will begin active fundraising for your portion of "the gap." Once tax credits are awarded and "the gap" is covered, you are ready to break ground.  

Yes, it can seem overwhelming to just imagine pulling this all off. Susan knows that all too well. As she says, "We can waste a lot of time complaining about what is not available, or we can get busy and make sure that it is there when our loved ones are ready. Our sons and daughters are the most remarkable people and they show us how to be strong and courageous. We can work together, community by community, to build and sustain homes that are beautiful, safe and bring all kinds of people together."

Architectural rendering: Midwest Modern/Wisconsin Preservation Corp.


  1. Thanks for this additional information Ellen! My only concern (and my husband's) looking at the picture was that it looks isolated. How easy will it be for folks living there to use public transit to get elsewhere? Thanks so much for bringing us all of this practical advice from Susan!

  2. Pictures can be deceiving. Yes, this is in a rural area. Yes, this is a small town (2,000+). But the project will be located within walking distance to banks, a grocery store, pharmacy, clinic, restaurants, potential workplaces, parks, hardware store, and a shopping district.

    Our group's priority was to insure that our loved ones could live in or near the small town, rural communities in which they grew up. While there aren't "city" buses, transportation services are available.

    And in response to the inevitable questions about bodies of water and autism not meshing, the body of water in the picture is a very small stream, that is not easy to access, and that definitely has no boat traffic;)

  3. Wow, that home sounds awesome! My son with CP is only 5 years old, but I already worry sometimes about where he'll live as an adult and who will take care of him. If I can't find an existing home in our area that's suitable for him, I could see myself banding together with a group of local parents to try to create something like this. Thanks for sharing!

    1. Michelle, like you I started wondering when my son was young what sort of housing possibilities the future might hold. I also have visions of banding together with other parents.

  4. I wish I could share the enthusiasm for this project. I am not a parent, so I cannot fully appreciate parents of kids with disabilities coming adulthood are thinking. However, I am a disabled adult who was a disabled child. My parents worried about what my adulthood would be like too. I have also worked in disbaility services and advocacy for over 25 years. And reading about this project frightens and frustrates me. Please bear with me as I try to explain why.
    The short version is that when I see a project like this I'm afraid it will turn into just another institution ... maybe with nicer decor and facilities, maybe with some new innovation like the participation of non-disabled tenents ... but in all meaningful ways an institution. By which I mean a centrally controlled facility where people with disabilities live and have their lives to some degree controlled and regulated in ways that would be considered bizarre and offensive in most people's regular homes and apartments.
    I don't dispute that something like this community might be good for some specific disabled people. My concern is that the track record of centralized, controlled living situations is not good. At the same time, there is still a kind of craving for these "communities" and "facilities" that keeps drawing people back to them. Maybe it's a sense of security they crave, or a more obvious built-in mechanism for "socialization." Whaterve the reason, everyone involved swears their program will be different, and they do mean it! But putting one group of people in charge of another group of people's lives invites abuse and more restriction than intended. Bad things happen in one-on-one, individualized support models too, but they are much easier to correct because they are small-scaled and don't depend on the continued existence of an entire facility. If need be you can fire a one-on-one aide, but in any larger organization problems inevitably become entangled with layers of bureucracy.
    The other problem is that well-intentioned models like this tend to draw energy and resources away from giving each person what they need in the way of supports, individually. Once established, large facilities and communities need to be maintained and fed, which leads to the classic problem of the tools becoming more important than the purpose. In order to keep the wondeful program going, we need more people in it, so we have to go out and persuade them, and now the idea of choice is being watered down once again.
    The fight against institutionalization can seem like a silly ideological battle, especially to people who essentially have no memory of what institutions used to be like and how pervasive they were. We have to keep in mind that the risks are always there, and flirting with "institutionalization lite" is at least as risky, and in fact far more dangerous than what people are so afraid of when they turn to institutional models in the first place.

    1. Andrew, thank you for sharing your insights and concerns on this. It seems that because these parents are the founders of this living community, they will be driven to watch out for and prevent abusive situations and overly strict restrictions. Theirs is an innovative approach, and parents need to innovate because states are failing our children. Of course, with innovation comes risks and it is important for them to have these issues in mind from the get-go and learn from the mistakes (and horrors) of the past. From what I can tell from my interactions with Susan, she and the others have been very thorough in their research and I imagine that this is on their radar.


Thanks for sharing!

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