In 2011, I attended the National Cohousing Conference in Washington, DC. It fascinated me because, at that time, I was living in an intentional community in the city and could not imagine living in a house with 12 roommates once I was married with children. I learned during this conference that my living situation was just one example of an intentional community. After hearing about all of the different cohousing models across the country, I realized that I could raise a family in our own house with privacy while also having the common amenities and relationships that make intentional communities such wonderful and supportive places to live.
There are 300+ established cohousing communities across the country. I have visited communities in Colorado, Utah, California, North Carolina, and Maryland. Many of these communities already include families or people with various disabilities. One of the most attractive things about cohousing is that it creates an environment conducive to supporting and accepting one’s neighbors as a close part of your life. Senior cohousing communities are increasing in popularity for similar reasons. Individuals are choosing to age in intentionally supportive communities to prevent isolation, to have natural support systems, and to continue being valued by their community despite age-related changes.
Over the past year, I have met groups of individuals interested in creating cohousing communities alongside autistic individuals and neurodiverse families. This is a sub-type of cohousing: neurodiverse cohousing. Several neurodiverse cohousing communities have created websites to share their visions: Osprey Village Cohousing, Building Ohana, and Rooster Ranch.
At the 2015 National Cohousing Conference, I introduced the concept of neurodiverse cohousing to cohousing supporters on a unique panel with other subtypes of cohousers including foster families and veterans. I met with autistic cohousing leaders, hosted a breakout session for those interested in learning more about neurodiverse cohousing, and then had the chance to visit a neurodiverse cohousing community called Northstreet Neighborhood.
NORTHSTREET NEIGHBORHOOD: AN EXAMPLE OF NEURODIVERSE COHOUSING
Located in Durham, NC, Northstreet Neighborhood has completely revitalized the greater community. Just five short years ago, on two city blocks, laid 15 shells of buildings, boarded up, collecting trash, and surrounded by overgrowth. With the help of a philanthropic investor, who took on the rehab of these brick shells at-cost, a small group of families from the same church began buying lots and building the homes that they and their community needed.
Despite the external uniformity of the homes, each has its own personality and custom interiors that are suited to the homeowner. For example:
- One family carved out ¼ of the space for their adult son who has a developmental disability. He has his own front door, kitchen, bedroom, bathroom, and living room. The other ¾ of the building is home to his parents and siblings. If they choose to move out, he could either create an additional income stream by renting the ¾ of the home to another family or move into the larger section of the home with his chosen roommates and rent the remaining ¼ to another person.
- One of the homes was purchased for a family member who has an intellectual and physical disability. She lives with a roommate who also uses an electric wheelchair and has two rental apartments upstairs.
- Two of the homes was turned into a Friendship House where Duke Divinity students live with roommates who have intellectual disabilities.
- A smaller home was purchased for a resident with disabilities to live with his caregiver. It was rehabbed to ensure enough space for his electric wheelchair and assistive technology.
- A neurotypical couple bought one of the buildings with the intention of using the downstairs floor as a community space for neighborhood gatherings. They live upstairs and after building relationships in the community, the couple invited a young woman with disabilities to move in, as well.
Everyone who needs support services coordinates their own providers. Community activities and common meals are planned as desired, but everyone lives by their own schedule. There are no fences between the homes, and yards are used as common spaces such as a basketball court and a community garden. This is how neurotypical resident, Margot Starbuck, describes Northstreet: “Since the summer of 2012, about sixty new folks have moved into this Durham, NC neighborhood. We’re old and young. We’re white and black and Asian. We’re single and married. We’re homeowners and renters. We’re people with graduate degrees and people who learn in special education classrooms. Some of us are mostly able-bodied. Others aren’t. What we hope distinguishes us is that we want to be neighbors with one another and we want to be neighbors with our neighbors—the ones who’ve lived in Old North Durham for decades.”
Sitting on the front porch with a few of the residents, I couldn’t believe how cars stopped to say “hello,” how other residents walked up for a quick chat before finishing unloading their groceries, and the sense of belonging that I felt, even as a stranger in their community. When I asked a young man with disabilities named “Slay” what makes Northstreet Neighborhood different from other places he’s lived, he replied, “Your heart is tied to community and that grows into trust and being vulnerable. It is one thing to go to a neighbor to borrow an egg, but to go next door crying because you’re dealing with something …”
As the National Coordinator for the Coalition for Community Choice, a rapidly growing alliance of organizations across the country, I know there are ideological and policy barriers to any intentional clustering of individuals with disabilities as “segregating” or “isolating.” Neurodiverse cohousing is completely different than congregate care facilities that are often villainized. It is simply a group of people who want to actively support and be supported by a neurodiverse community within the greater community. For those of us who have actually seen and lived in intentional communities, others don’t understand what the draw is until they actually go visit, and even then this lifestyle is not for everyone.
Want to meet people who have started and/or live in cohousing? Check out these cohousing events! Whether you are just curious, interested in moving into an existing cohousing community, or want to explore creating a neurodiverse cohousing community, it’s a great opportunity to get to know those in the cohousing world.
We all want to contribute to our communities as valued members of society, and neurodiverse relationships are pivotal in creating more integrated communities and better opportunities for individuals with I/DD. We need activities and places to build neurodiverse relationships, access to opportunities and supports that let individuals with I/DD teach others, and accessible attitudes and spaces. Families want to invest in stable housing and community options for their loved ones in hopes that they will find friendship and natural supports. Cohousing is one way to close these gaps, and the cohousing movement has years of experience and professionals to help local groups make their dream neighborhood a reality.
Powerful testimony to what can happen when people in a congregation discuss their challenges and work together to be Gods hands and feet to each other.
Hi Desiree,
Thanks for the great article. My husband and I have two fabulous young boys, and the younger one has intractable epilepsy, developmental delays, is mostly non-verbal and was recently diagnosed with autism. He’s had one brain surgery and will likely have another in the next year or two. He’s an absolute love bug and the happiest child! I have a few close friends whose children are also special needs and we talk often about how important it is to have our “tribe.” Its not to exclude others at all, but more to relate closely with the struggles, alienation, heartache, and successes of our unique children.
There are SO many services aimed at helping our special needs children, but what services fail to recognize is that our children are not islands. They exist with family members and siblings whose needs and wants are disproportionately placed second to the special needs child’s. This is where having a close knit community of allies and and friends would make all the difference. For my prototypical child to be able to closely connect with other siblings of special needs kids. For my special needs son to feel normal within our own community. For the parents to share babysitting or be able to host play dates so all parents get breaks, or spouses can enjoy a date together. I read once that 80% of married couples with a special needs child end in divorce. We are families that NEED each other. We dream of starting a special needs family housing community.
I live in St. Catharines Ontario Canada – father of a 20 year old non verbal autistic son – Logan Alexander Fair – I dream of a community like this where my son could live and be taken care of by us and others that are living our lives. – I look forward to finding out more about co- housing
where is one in middle tn
We have a few listings located in Tennessee in our Housing Directory: http://www.autismhousingnetwork.org/housing/. There is also an option to sort under “Property Types” by cohousing. Good luck!
I think there are three listings in Tennessee. Unfortunately, one organization is defunct; another (in east TN) has been turned over a State contractor to manage, so you effectively have to have a waiver to live there, plus there is a decades-long waiting list; and the third is only for very high functioning adults in an area of questionable safety in Nashville, and it has a very long waiting list too.
I know many parents who would support a new development. Does Autism Housing Network offer any services to connect parents who perhaps could band together to create a community? The ones already built are either unsuitable or have unrealistic waiting lists.
I am the aunt of a newly diagnosed special needs 7 month old infant. It appears she has severe epilepsy associated with Dravet Syndrome. We are looking for a good community she can be raised in where the parents can find like minded families and the support structure they need now and in the future. They live in Los Angeles County. Any places that anyone can recommend would be greatly appreciated.
Hi Angela,
The AHN was designed to help families with adult children find housing and supports for their loved one. A good place to start might be reaching out to The Autism Society at 800-3AUTISM (800-328-8476). There are also quite a few facebook groups for like-minded families to provide support from others living in your area or trying to find the same kind of community. Best of luck to you!
Inspired by your advocacy and work in the housing equity arena for persons living with I/DD. Inclusion in community matters. I’m on the same journey and would welcome an opportunity to discuss more about our journey at Two Sparrows Village in partnership with Christian City in Union City, GA. Looking forward to joining your network.
Hello !!! Iam looking for an coliving community where me and my 3 kids who are 15 , almost 18 and 20 who have Autism and other health issues can have our own housing close to others who can help us not be so isolated like we have been for all their lives . We need to move to Colorado or somewhere very similar to it for the trails , hiking , nature and hope to learn more about living more of an simpler life.One where we can learn to get away from too much of them only on their phones or Playstations . Where they can learn they there is more to life than these . We are all ready to move away from Iowa as soon as we can find a place to move . So can you recommend areas like this for us , please and tia .
Hi Lynn,
Have you had a chance to look through our Housing Directory and filter for ‘cohousing’ under ‘Property Types?’ https://www.autismhousingnetwork.org/housing/
You can also look through a cohousing directory online that may not necessarily be autism-focused, but might be similar to what you are looking for. https://www.cohousing.org/directory/
Best of luck to you and your kids!
I work as a state inspector covering services provided to people with IDD in Oklahoma. I have been asked to research information regarding how other states are handling neurodiverse cohousing to provide input to my state’s developmental disabilities authorities. There is a growing push in Oklahoma for cohousing projects and other types of intentional communities for people with IDD. The first such cohousing project in our state is well underway and the state is committed to provide appropriate guidance to this community to ensure it is successful. Also, the state wants to ensure our policies and law reflect the growing national body of thought on how to appropriately monitor services and supports in this type of residential community. Any information you can share with me would be greatly appreciated!