Updated: Feb 3
Today, nearly all neurodiverse families are encouraged and supported to keep their loved one at home, yet we know parents will likely not outlive their adult children. Let's face it- governmental, not-for-profit and local leaders of community-based services for people with intellectual/developmental disabilities speak a totally different language than those in the affordable housing industry, local planning commissions or bankers. How will neuro-inclusive housing be planned and built if they do not know how to speak to each other?
Unlike the senior housing industry, those who create affordable housing often have little awareness that people with Down syndrome, autism, cerebral palsy or other intellectual/developmental disability (I/DD) are a large population that need deeply affordable, accessible housing! This major disconnect has historic roots as people with intellectual/developmental disabilities were unable (and some states still unable) to live in their own home and receive their needed services.
I remember sitting in my living room, talking on the phone with Denise Resnik about this disconnect and how even those in our autism-bubble in different states did not have unifying terms to talk about residential options. Being the co-author of the first report on housing and autism that inspired me at the Madison House Autism Foundation to start the Autism Housing Network back in 2009, she said we should approach Arizona State University again to develop this resource that could offer the foundational nomenclature to launch the next generation of inclusive housing development.
About four years later and after many think tanks and hours working alongside the researchers, the report was published in October 2020, A Place in the World: Fueling Housing & Community Options for Adults with Autism and Other Neurodiversities.
The report is truly a must-read for anyone interested in the broad spectrum of supportive housing solutions for those with autism or other I/DD. If we are going to have a conversation about who you want to serve and what type of solutions you are seeking, using the nomenclature and the worksheets at the back of the report to describe your vision will make our consultation much more efficient.
The 230-page report contains a few distinct sections that should be noted:
A glossary of terms that both the housing industry and the support service world can use to describe how to work together to meet the demand
Housing Market Guide of 14 distinct and diverse properties
Two powerful policy papers written by the 2020 Daniel Jordan Fiddle Foundation Center for Public Policy at the First Place Global Leadership Institute, Pooja Paode: 'Housing for Adults with Autism and I/DD: Shortcomings of Federal Programs' and 'Better Data Make Better Policy: Defining the Unmet Housing Needs of Adults with Autism and Other Neurodiversities'
Recommendations for Next Steps needed to meet demand
This groundbreaking report is already being used to help define visions of local leaders as well as inform the housing industry that there is an untapped market for neuro-inclusive housing solutions nationwide. I look forward to continuing to engage and equip those who have the capacity to meet the needs of neurodiverse citizens across the country!