Our son Matt is 29. He’s smart, handsome, super kind and lives with autism. Imagine the frustration of not being able to find the words to describe what you want, speaking without being understood — or both.
As parents, we’ve struggled too as we do the best we can for him. We’ve also been fortified by his progress at every age. Living at First Place–Phoenix these past two years has been confidence-building and empowering for us all. While we still have a ways to go, Matt is steadily gaining traction on his path to more independent living.
Matt is the reason I co-founded the Southwest Autism Research & Resource Center in 1997 and founded First Place AZ in 2012. Together with passionate and innovative pioneers, we’ve proudly built what the 2016 PBS NewsHour series acknowledged as “the most autism-friendly city in the world,” giving more people the chance to succeed early in life and as adults.
Our big vision from decades ago that endures to this day means a lifetime of support for individuals and families impacted by autism — starting with early diagnosis, intervention and education and continuing through adulthood — recognizing that a diagnosis need not stand in the way of friends, jobs, supportive communities and homes of their own.
Through the years, I have found it difficult to find the words and means to convey what Matt needed, as well as what we wanted for him outside our family home. I was challenged to articulate a new approach to housing and community development options in comprehensive terms, recognizing there is no one-size-fits-all or diagnosis-specific approach.
Those experiences and more drove a recently released report, “A Place in the World: Fueling Housing and Community Options for Adults with Autism and Other Neurodiversities.” It offered the universal language for a guiding narrative to research, develop and achieve supportive housing solutions.
It includes more than 150 terms to help guide people to better understand housing preferences, accessibility needs, supportive amenities, service delivery models and more. It aims to clearly define nomenclature and market segments for the benefit and application of all sectors; establish best practices and guiding principles; and drive crucial partnerships and policy decisions that address pressing needs compounded by the current housing crisis.
This fall, we introduced the study to pioneers from across the country and around the world at the First Place Global Leadership Institute’s eighth semi-annual symposium hosted via webinar. Nearly 600 people representing public, private, nonprofit and philanthropic leaders from nearly every state, about 300 cities and six countries registered for the event.
The report is also a testament to the persistent, urgent need for housing and community solutions, the result of an unprecedented number of children with autism transitioning to adulthood and the stark reality of a disjointed, disconnected support system combined with limited housing options. Current data indicate more than one million U.S. adults with intellectual and developmental disabilities, or I/DD — autism, Down syndrome and cerebral palsy — live with a caregiver over age 60.
“A Place in the World” is a unique collaboration among a wide array of partners, including Arizona State University’s Watts College of Public Service and Community Solutions and its Morrison Institute for Public Policy, the First Place Global Leadership Institute and its Daniel Jordan Fiddle Foundation Center for Public Policy, Autism Housing Network, and national and international leaders in the field.
Through a broad and more robust marketplace, individuals can better match their needs and interests with homes they choose, combined with natural supports and more formal long-term support services. Consider that we are today with housing for special populations where pioneers like Del Webb, Ed Robson and Sharon Harper were decades ago with innovative senior housing solutions. Demand is high, but options remain scarce. Like curb cuts as an advocacy response to people in wheelchairs, we all benefit from more locations, price points, amenities and service options.
Together, we can inform outcomes demonstrating what works, what needs to work better and how supportive policy can better align the interests of all sectors to fuel a dynamic marketplace of options.
Report sponsors include United Healthcare Community Plan, the Phoenix IDA, the Arizona Community Foundation and Bill and Alyssa Sunderland, leaders who recognize the value of housing as a major social determinant of health and the need for a common language to inform, improve and launch a marketplace of more innovative housing for special populations.
Through the robust collaborations that made “A Place in the World” possible, we can — and will — fuel a new generation of real estate that promotes greater diversity, expands choice, drives solutions and yields more positive outcomes.
Please be part of this journey. Let me know how you see yourself becoming involved, impacting those you care about and our community at large while making new history together in the most autism-friendly city in the world. JN
Denise D. Resnik, is the founder, president and CEO of First Place AZ.