Neurodiverse Cohousing: What is it and Why does it Matter?

[Desiree Kameka will be a panelist for the “More than Just Cohousing” session at the 2015 National Cohousing Conference.]

Diversity is often spoken of in terms of ethnicity, religion, and socioeconomic status, but what about neurodiversity?

Neurodiversity encompasses the idea that there is a broad human expression of neurological differences. As we move away from the medicalization of diagnoses, we learn that those with Down syndrome, cerebral palsy, autism, along with the five million adults with intellectual/developmental disabilities (I/DD) are different, not less than those who are “neurotypical.” We live in a neurodiverse world!

As I travel around the country, I research and write for the Madison House Autism Foundation about different housing and employment options and opportunities for individuals on the autism spectrum or those with I/DD. They are not satisfied with the very limited housing and support options that currently exist. Many of these options still approach individuals with I/DD as a manifestation of their diagnosis instead of dignified individuals with physical, emotional, spiritual needs as well as life goals and preferences. Waiting lists to access support services are very long, and family units are exhausted and isolated from lack of community support. In the past 20 years, the government has funded the essential life supports for fewer than 250,000 people with I/DD to move out of their family home, and over one million adults with I/DD live with family caregivers who are over the age of 60!

More important, individuals with I/DD live in our communities and desperately want to contribute, yet lack of opportunities prevent the development of neurodiverse relationships that would in turn influence the needed culture change. In order to make our communities more integrated, we need greater access to intentionally neurodiverse space and accessible attitudes. Fortunately, local communities across the country are organizing and creating options that offer meaningful life opportunities, make effective use of technology to decrease direct support staffing, and provide the spaces to foster natural supports that do not exist in the greater community.
When I give presentations or consult for emerging housing options, I often hear that individuals with I/DD want a place to belong in a supportive and affordable neighborhood. Walking to a friend’s home, having regular opportunities for things to do, being recognized as a person who contributes to the lives of others, knowing your neighbors will watch out for you or will be there to help you make life decisions are all features of neurodiverse intentional communities.

The facts of the current trends are troublesome: Forty percent of individuals with I/DD report feeling lonely; many do not have relationships outside of their family circle. A 2012 survey showed that 70% of people with disabilities are likely to be victims of physical, sexual, emotional or financial abuse. Many live on less than $750 a month; housing vouchers cannot meet the demand. Their families want to invest in stable housing and community for their loved ones with hope that they too will also find friendship and natural supports.

As the National Coordinator for the Coalition for Community Choice,
a rapidly growing alliance of leaders across the country including some Neurodiverse Cohouser’s, I am excited to be part of the Saturday morning ‘More Than Just Cohousing’ panel at the 2015 National Cohousing Conference. My goal is to build better bridges with cohousing professionals and those in the special needs community who are interested in pioneering the way for neurodiverse cohousing and increase neurodiversity in existing communities.

Let’s connect.

For more information or to connect, please contact me at:

Desiree Kameka

Director of Community Education, Advocacy & Outreach

Madison House Autism Foundation (MHAF)

Desiree’s work for the Madison House Autism Foundation focuses on researching housing issues, advocating with organizations, families, and autistic adults on housing issues, and presenting her work at local and national gatherings. She visits many residential communities and social enterprises across the USA and abroad in order to highlight their unique victories and learning curves while sharing stories of residents / employees with autism and other developmental disabilities. Desiree is also the project lead for Madison House’s interactive Autism Housing Network, which is currently in BETA testing. Her passion is empowering communities to create a future that is exciting and life affirming for those of all abilities by offering presentation and small group consultations for forming projects.

Category: Diversity

Tags: Accessibility, Diversity, More than Cohousing, neurodiverse

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