What keeps you going? Not such an unfamiliar question, right? As my North Star, our son Matt, age 28, keeps me going, as do good health, a “keeper” husband of 36 years, supportive family members and friends, super-smart and talented colleagues, generous donors—and a big vision.
Combined, we’ve gotten through some very long days, even longer nights and the longest of all, the list of “noes.” You know the kind: No, not a good idea. No, not now. No, not something we could support. But with each disappointing no, we continue to embrace that big vision that picks us up, dusts us off and channels our energies in more positive directions.
It started 20 years ago as part of the residential strategic plan presented to the board of directors of the Southwest Autism Research & Resource Center (SARRC), just a few years after the nonprofit was formed. SARRC’s big vision back in 2000 and still holding true for First Place AZ in 2020:
“Our vision is to create an internationally recognized model that can be duplicated in other parts of Arizona, across the U.S. and around the world. … This model community will promote maximum independence for the individual, offering choices in terms of housing options, employment opportunities, recreational programs and daily living activity, integrating individuals with autism and typical peers with the community at large. … It is for them and the families who love them that this community will be developed, for it may be the first time that the future holds promise.”
That vision is materializing daily through life at First Place–Phoenix and advancing more broadly through the First Place Global Leadership Institute in collaboration with SARRC and other pioneering leaders around the globe. You can learn more by joining us, along with passionate family members and professionals, April 22–24 for our spring First Place Global Leadership Institute Symposium. (Sign up here to receive info on our upcoming symposium.)
Based on extensive research and study, here’s what we’ve learned over the past two decades about what doesn’t work:
- Building homes for three to four people at a time in the hopes of ultimately accommodating the estimated 70,000 children with autism entering adulthood annually, in addition to affected adults aging into midlife and late life.
- Looking exclusively to a government with dwindling resources to address the huge demand.
- Relying on a diagnosis to tell us what people want and need.
- Focusing on only the four walls of the home when community development—employment, healthcare, lifelong education and recreation—are just as important.
Here’s what we can and must do to build a marketplace with more locations and a variety of amenities, supports, services and price points while recognizing there is no one-size-fits-all solution:
- Speak the same language by creating a universal nomenclature of supportive housing models while segmenting the population based on their needs and interests.
- Involve all sectors—public, private, philanthropic and nonprofit—and build the virtual superhighway empowering us to go faster and further together.
- Produce solid data and identify drivers of outcomes, ensuring we move the needle on a quality of life impacted by both the physical home and community, and inform supportive government policies.
- Attract trained direct support providers by creating a well-respected field focused on career paths with value-based versus commodity-based compensation.
- Separate supportive services from real estate ownership to maximize residents’ choices, allowing them to select service providers that meet their needs today and over time.
- Take full advantage of significant advances in technology and design for a generation of children with autism empowered by early intervention.
The past decade gave rise to more kids with autism than ever transitioning to adulthood. And because of the National Autism Indicators Reports led by Paul Shattuck, PhD and Anne M. Roux, MPH, MA, we have real data acknowledging that the majority slide backward at a far greater rate after high school than any other disability group.
We can’t keep doing the same thing and expect different results. We must learn valuable lessons, recognize that each of us has an important role to play and do what’s attainable now as we plan for what’s next. All things are possible when we begin our story with a vision bigger than ourselves and keep going courageously and collectively as communities to ensure that housing and community options are as bountiful for people with autism and other neurodiversities as they are for everyone else. Onward!