Fueling a new generation of housing and community options for people with autism and other neurodiversities is an experiment—a big one.

While we all want successful outcomes, the variables are vast, resources limited, models scarce and data still out of reach. With demand for housing and services at an all-time high as approximately 60,000 individuals with autism in the U.S. transition to adulthood each year, we cannot afford to fail.

At First Place, we’re doing our best to make informed decisions and help others do the same. During the ninth First Place Global Leadership Institute Symposium, we heard from pioneering leaders from across the U.S. who shared some of what they wished they had known before building their properties. 

Revelations include:

  • A pandemic?! That wasn’t in the plan!
  • Bridging the divide between start-up and full operations
  • Staff training and turnover
  • Policies and procedures
  • Importance of broad community buy-in and support
  • Significant investment of time and money
  • Diverse skill set necessary for being a landlord
  • How to meet the needs of various special populations served

Several polls taken during the event also revealed some common “pain points,” like funding, affordability, privacy issues, employment and life course outcomes. It’s encouraging to see so many of us on the same path—and the same page.

Sure, we all make mistakes along the way—but we can work together to avoid the big ones! First Place has been sharing its own “lessons learned” through the years to help others avoid some missteps and reinventing the wheel. To drive and realize the dream of a new marketplace of housing and community options, we’re here to help guide pioneers at each stage of their journeys—from visioning, organizing and planning to design, construction and operations.

We know people need different things at different times—and we have listened. That’s why we have organized our support in a variety of ways, making it easier for you to engage, learn and advance your plans.

In the meantime, here’s what else we can recommend:

  • Celebrate. Enjoy your successful completion of next steps, pleasant surprises and rewards along the way!
  • Expect stuff to happen. Be ready, stay humble and continue learning.
  • Don’t be afraid to fail. None of us gets it right every time! Don’t allow failure to stop you. Course correct and make setbacks temporary—they’re an important part of the journey!
  • Be strong and resilient. Surround yourself with those you respect and trust. Community is built by community—build yours to last!
  • Look back to look forward. Forge your path ahead by keeping an eye on the rearview mirror.

Don’t delay in seeking sources that can help you advance your decision-making, reduce your risks and get you moving toward your goals. And please join the rest of us as we press on to learn more, grow more and offer more housing and community options—together!

To keep the momentum going, we’re offering a series of three workshops focused on relevant, timely topics. Attendance is limited, so please register at your earliest convenience.

Register: $59 per workshop or $149 for all three

(October 2019 Series, Blog #1)

Highways are designed and built with much thought, engineering and investment. Rules of the road help us get where we’re going easily, quickly and safely. For drivers and passengers alike, onramps and offramps offer many choices, including opportunities to extend exciting journeys or return the way we came.

During this week’s Autism Speaks Thought Leadership Summit on Transition to Adulthood in Washington, D.C., I had the chance to share our family’s journey of Matt’s transition to adulthood and humbly reflect on the myriad challenges and opportunities associated with education, healthcare, employment, housing, research, life-course outcomes, system gaps—and so much more.

Consider this our time in history to build the superhighway for transitioning adolescents and adults with autism and other neuro-diversities. Each lane represents a different sector: public, philanthropic, private and nonprofit. Now consider where you want to go, what you’ll be driving or what may be driving you to your destination. Understandably, we won’t all arrive at the same time, in the same way. With the potential for traffic jams and gridlock, highways—and life—don’t work that way.

We need to phase in our ambitious plans by recognizing that each sector has much to offer as it diligently builds its respective lane of the superhighway:

Take a few moments to determine what you can contribute to or build for this superhighway. Perhaps a temporary or permanent supportive “overpass” while we’re under construction? An innovative model with proof points making a supportive, new ramp possible? Progressive policies representing those all-important guardrails for our collective safety? Critical funding and engineering fueling greater capacity and more positive life-course outcomes?

While some of us are close to our desired destinations, others have much longer distances to go before securing a job or moving away from the family home. And still others have taken a detour and need to get back on the road.

Rev up and join us on this journey! Working together with a common destination in mind, we can ensure housing and community options will be as bountiful for people with autism and other neuro-diversities as they are for everyone else.

Watch for the Autism Speaks report from this week’s summit—and join fellow pioneers at the First Place Global Leadership Institute Symposium in Phoenix, Oct. 23–25, too!

Next: Cultivating Supportive, Inclusive Communities (Blog #1 October Series) 

(2019 Summer Series, Blog #6) This time of year, Matt is often asked where he goes to school. It’s understandable, considering his youthful appearance and mannerisms, as well as his small stature at 5’3″ and barely 110 pounds. His response of late: “I don’t go to school. I’m a working man!”

Most people wouldn’t know or appreciate just how hardworking this man is and how much progress he has made through high school, at SMILE Biscotti and now First Place. This summer’s blog series has allowed us to reflect on all the spaces where he continues to learn and grow—as do we, his parents. It’s easy to become overwhelmed with all of his specific personal goals, which we update as we help him with each step toward achieving greater independence. It’s also super important for us to take stock of the many ways he continues to advance.

Pictures provide powerful reminders of Matt’s growing independence. And thanks to the First Place vans and his proximity to the light rail, he now has the freedom to not just recite but actually experience his all-time favorite Dr. Seuss book, “Oh, the Places You’ll Go!” Enjoy this reflection of all the places we’ve been and the places we’ll go—together!

Check out previous posts from the 2019 Summer Blog Series here:

Intro – Matt’s Transition to First Place–Phoenix: Lessons learned along the way

  1. Plugging the Holes: Taking note of what Matt can—and can’t—do
  2. Small Steps and a Big Team: The benefits of high- and low-tech solutions
  3. Gradually Building on Success: Taking stock of the little stuff, too
  4. Test Run: Celebrating Matt’s growing independence—and a 35th-anniversary celebration in paradise
  5. On Our Watch: Creating confidence in the future

Our 2019 summer blog series chronicles the journey of our son Matt’s transition to life at First Place–Phoenix, thanks in large part to Rob—Matt’s tech-savvy dad, “father of fun” and my husband of 35 years—our supportive family and the talented First Place team. We hope it will assist you or those you love through some valuable lessons learned along the way.

While Matt has been our personal inspiration, we’ve reached out far and wide over the past two decades to inform the design and operations of First Place–Phoenix through the evaluation of 100 properties for special populations across the U.S. We’ve hosted focus groups, national design charrettes and a national family roundtable, acknowledging hopes, dreams and fears.

Much time has also been invested in community life at First Place, with a focus on how residents connect with the broader community where people make friends, find jobs, access healthcare, enjoy lifelong learning—and have fun!

We recognize the huge transition this represents for us as parents seeking to build confidence in the future: Matt’s and ours. Every planning session, every hard hat tour and now every day in real time remind us of Matt’s momentous, complex and profound journey.

We hope you’ll join us on this summer blog series—and benefit from some of the valuable, enduring lessons we’ve learned along the way!

Next: Plugging the Holes: Taking note of what Matt can—and can’t—do (Summer Series Blog #1)

The beautiful plans for First Place–Phoenix were approved in the summer of 2016 with complete sets of drawings and the oh-so-critical financing and permits in place. Final bids from subcontractors during the robust real estate market came in high—really high—at over $18 million. Recognizing that we would be too highly leveraged, the board required us to take a timeout to undertake an extensive value-engineering exercise and proceed with two public zoning variances. Sidelining the process and returning our city-approved plans to the drawing board was painful but necessary.

The single largest expense item of the property was an underground-parking garage costing $2 million to accommodate the number spaces required under the approved zoning. We had already been planning how to use a large portion of the garage for something other than parking, because we knew many of our residents would not drive. A major consideration for selecting our location was its urban orientation, within walking distance of public transit, including light rail. To eliminate the underground parking, we needed to allocate more surface-area space, reduce the size of the first floor of the four-story property and do our best to preserve the significant investment in completed plans.

While the value-engineering timeout undertaken by our board—and involving RSP Architects and contractor hardison-downey construction—was painful, it was also incredibly productive, resulting in a cost reduction of $3 million. This unexpected but crucial timeout also allowed us to get closer to our neighbors, giving them a chance to more actively weigh in on our design and area improvements, as well as to show up at our hearings in support of the new plans. We found ourselves collaborating and enjoying the first of many celebrations together.

Please join us for the fall First Place Global Leadership Institute Symposium, October 24-26. There’s much we will continue learning from each other—and so much more we can do and build by working together!

After exploring and evaluating dozens of opportunities, First Place® AZ made serious offers for the acquisition of two parcels of land prior to the purchase of the 1.4 acres where First Place–Phoenix stands today. All were urban-oriented locations. Designs were rendered and proformas created for the two former properties. The third—and current—property was definitely the best choice.

RSP Architects did an excellent job listening to our team, reviewing our research, participating in difficult discussions and crafting a beautiful plan that illustrated the design goals from our 2009 Opening Doors collaborative study and conveyed several key guidelines. With the financing package in place, an approved set of plans from the City of Phoenix and a ceremonial groundbreaking date set, we thought we were ready for nuptials!

Not so fast. The First Place board of directors and our closest advisors recognized that the cost of the building was greater than estimated, our nonprofit would be too highly leveraged and—unless we could demonstrate economic sense and financial sustainability—future properties didn’t look feasible. That’s when we pushed the “pause button” and took a six-month time out to re-assess and value-engineer, resulting in the reduction of $3 million from the original project cost.

That time out served us well. More importantly, we were able to recognize the need to step away to cool our ardor for our original plan, which resulted in significant savings and a sounder replication plan.

There are still a few spots left for the fall First Place Global Leadership Institute Symposium from October 24-26. This year, we’re co-hosting a real estate think tank with the Autism Housing Network and other leaders in the field, where we will address the ever-increasing demand for housing. Hope you’re able to join us—so many lessons we can learn from each other!

One of the biggest and most consistent challenges over the years has been the process of creating a property for everyone, taking into consideration individual levels of need, resources and dozens of other variables. We don’t all live in the same type of communities or homes, so what makes us think that individuals with special needs should?

Consider the budding development of a market for senior housing some 50 years ago here in the Valley, when Del Webb broke ground on Sun City—the first and only retirement option for seniors at the time. Fast forward to present day and the many choices available to seniors, including locations, price points, amenities and services, as well as a focus on vital health and mobility issues. Today’s seniors also have the opportunity to repurpose their careers and pursue a plethora of hobbies and interests.

That’s the kind of marketplace we need to develop for special populations. We also need to recognize that there’s no one-size-fits-all solution and that understanding the needs of each market is critical to success for both the developers and those they serve. While real estate is an important component, how a property lives, breathes and connects to the broader community is equally important and cannot be overlooked in the short- and long-term planning process.

For the last 20-plus years, we’ve been building a supportive community in Phoenix through the hard work and dedication of the Southwest Autism Research & Resource Center (SARRC), the Arizona Autism Coalition—and First Place AZ, added to the mix in 2012.

As you determine your vision and who you’re serving, remember this powerful word: attainable. Focus on what is attainable today by learning more lessons, attracting more attention, and building your reputation and brand. A realistic approach takes time and patience, but the outcome—knowing and meeting the specific needs of your market—is worth the wait.

Please join us to continue the conversation and share many more lessons at this fall’s First Place Global Leadership Institute Symposium, October 24-26. There’s still much to learn from each other and so much more we can do and build by working together!

I drafted the first strategic plan on housing in 1999—just two years after co-founding the Southwest Autism Research & Resource Center (SARRC)—but our first published research didn’t follow until a decade later through a study titled “Opening Doors: A Discussion of Residential Options For Adults Living with Autism and Other Related Disorders.” This groundbreaking study represents the evaluation of nearly 100 properties and programs for special populations across the U.S. It also presents 10 specific design goals and guidelines, maps out the steps required to build and advance a marketplace of housing options for special populations and includes a collection of resources. The study included focus groups involving more than 100 individuals with autism and their family members, helping shape our bold vision that endures to this day: to ensure that housing and community options are as bountiful for people with autism and other different abilities as they are for everyone else.

We recognized that collaboration among the public, private, philanthropic and nonprofit sectors is essential to achieving that vision. We brought together leaders from throughout Arizona and across the country to further inform our plans through a national family roundtable, two national charrettes and literally hundreds of meetings dissecting problems, probing solutions and anticipating new challenges.

This graphic is the result of our national family roundtable, summarizing the hopes and dreams of families. It’s stored in our ‘peace room’ and helped guide the development of First Place-Phoenix, together with other significant bodies of work.

We’ve learned a lot through the years and are eager to share more with you as we collaborate to empower a new wave of real estate in this important marketplace. Please join us for First Place AZ’s fall Global Leadership Institute Symposium from October 24 to 26. There’s still much to learn from each other—and even more we can do and build by working together!

We’re thrilled to welcome 30 new residents to First Place–Phoenix since our opening last month and plan to welcome many others in the weeks and months ahead. Needless to say, it’s been a time of tremendous teamwork, celebration and reflection.

Together with residents, our 24-member staff is building a culture and community of pride, purpose and fun. Each member’s educational background, work and life experiences—and compassionate hearts—inspire me and build my confidence daily. They have been working tirelessly to understand everything about First Place–Phoenix and, most importantly, about the individuals making their homes there.

While First Place’s history spans nearly two decades and fills the cabinets and shelves of our “peace room,” six current lessons come to mind. I’ll be sharing one each week as we gear up for the First Place Global Leadership Institute Fall Symposium from October 24-26, our fourth since the first semi-annual gathering in April 2017. Check out details and register here. Space is limited.

Lesson #1: Build a trusted team that can agree—and agree to disagree

Developing real estate can be a long and winding road, complete with right turns, wrong turns and U-turns. Market cycles play a big role, as do finances, local jurisdictions, neighbors and, most importantly, vision.

First Place has benefitted greatly from the unwavering commitment of private, public, philanthropic and nonprofit leaders who never stopped believing in our vision, empowering us to follow through on the completion of our first innovative property and to begin planning for others.

Building trust is critical—trust in expertise, judgment and in each other—as is knowing all team members are in your corner, even when they don’t agree. A unanimous decision from a board of directors often requires active, detailed discussion and significant time after which unexpected solutions often come to light. In our case, those solutions required angels. We found those angels among our most trusted advisors who had been providing us with counsel, clarity and resources for more than a decade.

Remember to keep those angels close. They will watch over you and protect you. And remember these three pieces of wisdom shared by one of our very own:

We look forward to sharing more soon and welcoming you to the October symposium!

By Denise Resnik, Matt’s mom; originally posted on Different Brains

Community building is a process. It requires vision, passion, grit, resilience and an ability to connect dots—lots of them. It also requires sound strategies and fundamentals, which we’ve been sharing with families across the country in ever-increasing numbers thanks to two PBS NewsHour segments aired this month, featuring First Place®AZ, SARRC and our supportive community in Phoenix, dubbing Phoenix the “most autism-friendly city in the world.”

A Place in the WorldProduced by NYT-best selling authors of “In a Different Key,” John Donvan and Caren Zucker named their segments, “A Place in the World:”

Giving adults with autism the skills to build independent lives (PBS NewsHour, August 9)

How Phoenix became the most autism-friendly city in the world (PBS NewsHour, August 10) 

The most valuable lesson learned over the last two decades can be reduced to a single word, shared with me by a big-time Chicago-based real estate developer. With at times a rough exterior, but at all times an enormous heart, Bill Smith of Smithfield Properties was our first contributor to First Place and helped us set forth very important guiding principles, advancing our work years ago and continuing to guide our approach today. His word of wisdom and now ours is: attainable.

While we wanted to build something for everyone, Bill helped us focus on what is attainable for now, knowing that in order for us to realize a big vision of expansion and replication across North America, we have to take our first steps, make them real and make them matter. Clearly, there is not a one size fits all, but I so wanted to cast a net that could include everyone based on level of ability, price points, design preference and the list goes on.

Other things to consider as you take your next steps to building community:

Connect: Get out of the “silo mentality” of one box for a specific age group and another for a different disorder. Organize by need, interests and complementary strengths to celebrate diversity that’s integrated, multi-level, multiagency and multigenerational, producing richer experiences for everyone and also supporting a life trajectory versus a specific destination, allowing for changes and growth.

Reach out broadly: Involve the broader community—not just the special needs community in addressing pressing issues. Building community support is essential for the continuity of care and important life transitions. Coordinate among housing and service agencies at the local, state, and federal levels; promote interagency collaboration, which can increase the efficiency, quality and cost-effectiveness of the housing system and reduce the enormous stress on individuals and their families; ensure that residential housing for special populations becomes an integral part of a healthy community’s housing plan.

Scaffold: Identify and evaluate what’s already working in your community. Build and expand on your community’s assets. Collaboration, models and replication are all needed to create greater equity, impact and sustainability for the long-term.

Innovate: Public, private and charitable interests must be engaged. Clearly, funding for residential services for aging adults with autism must be expanded to ensure that housing is available regardless of a family’s financial situation. We must be creative. Consider how we can work together to restructure the way existing government funding is allocated to housing resources for the developmentally disabled in order to grow a sustainable real estate supply over time.

Measure: Support the creation of new metrics to track value and quality of life outcomes. Only through collective efforts will public policy advances be made on these critical

Lead by Example: The best way to change the undesirable statistics for adults with autism is to work together, innovate, demonstrate success and open more doors for adults looking for jobs, homes, supportive communities and social networks.

We’re excited to be breaking ground on First Place-Phoenix later this year, proceeding with a private pay option and what is attainable today, while engaging government leaders in the model, advancing policy and braiding together future public supports.

Sadly, Bill will not be joining us for the momentous occasion of our groundbreaking.   He passed away earlier this summer at the age of 65 from a massive heart attack.

While his portfolio of landmark properties looms large, his heart has an even larger presence in our history and new history in the making. Thanks to his belief in our vision from the earliest days, generous support and wisdom, we are taking some very big next steps with great pride and what’s attainable. Thank you, Bill, and may you rest in peace!