Something amazing happened this year at Arizona Autism United’s 7th annual Caring Hearts Luncheon. During my speech, I revealed some big news about our organization’s plans for expansion. After hyping it up for more than a year, we were finally ready to tell the world where our Big New Center would be located. When it was my turn to speak to the audience of 500, I took the stage and prepared for this highly anticipated, earth-shattering moment. As it finally arrived, I paused to look around the room and visually connect with every stakeholder, every supporter, every parent and every teammate…and then elevated my vocals to say with confidence, “After a year of research and analysis, we have determined that the best chance of success for this new center is…in..…the….…EAST VALLEY!”
At first there was silence – shock, perhaps, followed by the emergence of a distant slow clap. One by one the others joined in, until suddenly the whole room was filled with thunderous applause. Hoots and hollers could now be heard, and before I knew it I was surrounded by a standing ovation. Flowers were being thrown onto the stage, spontaneous dance parties were erupting between tables, and somehow the room was filling up with an explosion of indoor fireworks. I realized there was no choice but to let my hair down and do a stage dive into the crowd, and next thing I knew I was being carried outside amid chants of, “Big new center! Big new center!” The revolution had begun. Our dream was coming true at last!
And then I woke up. It was September 12th, 2018, 6:15 am. Today was the day of our annual luncheon, and I had an important message to deliver, with about 30 minutes to put on my suit and get ready for rehearsal.
Of course, my message that day was not the most important one. That honor belonged to three courageous AZA Moms, who took the stage to share their personal stories of heartbreak, triumph and perseverance. Raising a child with autism is hard, but with the right kind of help and support, there is hope and beauty in the journey. Success is completely possible (and that is defined by whatever values and goals each family has), but as one Mom put it, “We autism parents recognize that we can’t do it alone.” That is why organizations like AZA United need to exist, and need to keep growing.
I’ve been working in this field for more than 20 years, since shortly after my youngest brother was diagnosed. There has been so much positive change since then, especially in Arizona, where treatment and services were almost nonexistent when I first moved here. Parents can now access a wide range of trainings, therapies, behavioral intervention programs, schools, and family support networks. Medicaid and private insurance plans are catching up and covering critical treatments like Applied Behavior Analysis (ABA), and schools have adopted a wider range of classroom models, with improved inclusion and behavioral support systems. Whereas provider agencies once refused to talk to each other, now we have several great coalitions, committees and associations that are working together to promote positive change for the community. When I think back to how different things used to be not that long ago, there’s a lot to be thankful for. My family can certainly remember and appreciate the difference.
And yet…we still have so much work to do. Although funders are paying for more treatment and services, families run into waitlists everywhere they look. If parents can find a quality provider that has availability for intensive early intervention, they quickly discover that it’s almost impossible to do it without a stay-at-home parent – a rarity in today’s economy. Accessing individual therapies like speech & OT often require driving all over town during rush hour or competing with availability that interrupts the child’s time in school. Speaking of schools, the emergence of charters has provided more options than ever before, but effective teaching methods and appropriate staffing ratios are frustratingly inconsistent. Many parents feel stuck between a small handful of disappointing choices, and some just choose to homeschool which makes social development and forming friendships extremely difficult. When parents do find a great classroom, they still have to gear up for every summer and school break when suddenly their child needs all-day supervision and meaningful engagement all over again. Unfortunately, many of the things their typical peers are doing are not really designed to include our kids, and working parents once again are left shuffling the cards and trying to make it work. Summertime in AZ is particularly brutal, when playing outside is simply not an option. Sometimes siblings can help, but they have needs too, and as they age they may need their own supports to make sense of their role and their emotions about it. Meanwhile, parents have their own struggles at different stages. The promise of early intervention is not a cure – rather, it is to get far ahead of potential challenges that could otherwise arise later. Inevitably, some stages of growth will be harder than others, and parents may struggle to find the type of support they need to make the most of tough situations. As kids enter adolescence, teen years and adulthood, social isolation is a major risk, and sadly a reality in many cases. Opportunities fade within schools, and many adults struggle to find employment or meaningful daily engagement. As our understanding of the spectrum has widened, it has become increasingly clear just how many unmet needs exist, as our healthcare and service systems tend to hone in on a few key treatments without fully addressing the holistic reality of people’s lives. It’s not that no one cares, or that funders are not aware of these issues. It’s simply a huge problem to solve, and a lot of people to help.
We at AZA United are nowhere close to providing all the answers, but we do believe we have a responsibility to keep growing and innovating to help more families. We need to expand geographically, with a broader variety of services and supports to help a wider range of age groups. That is why we are preparing to take a big step forward next year by opening a “Big New Center” in the East Valley. More space means more capacity to hire and train great clinicians and habilitators, which means more families can get services faster. We’ve always been in an office environment, so now we’ll build something designed for fun and engaging center-based activities and programs all day long. Working parents will have a drop-off option that they can feel confident in to provide high quality therapeutic intervention and social engagement for their child, and all those school breaks will now have a new opportunity for kids to come have fun and make friends. We’ll make sure siblings like it too, and add some support services for parents such as counseling and coordination of care assistance. The center’s location will be in a residential area, to minimize the drive time barrier for kids needing therapies from clinicians who specialize in autism treatment. We plan to partner with local schools and hopefully create a classroom of our own, to model what’s possible and facilitate training for teachers or their classroom assistants. We envision a lively space to organize get-togethers for teens and adults, to help them grow socially and make new connections in their community. That is where our plan starts, and with input and feedback from families it can all keep growing and prepare us to build another center soon, as we pursue our vision of being within reach to everyone across the valley, and eventually the state.
We have two guiding principles in mind as we design the Big New Center: a place where families want to go, and employees want to work. We are strong believers that employees who feel engaged and supported do better work and provide higher quality care. It is critical to us that this east valley center adds to the sense of commitment and opportunity for employees of AZA United, the members of Team AZA. As much as we are proud of what we’ve built so far, we know that our teammates still have work-related struggles that we must solve. There are many advantages to home-based services, but they always come with the downside of too much driving, inconsistent hours, minimal contact with peers, and limited supervision opportunities for staff. For teammates that want to grow a career in ABA, speech therapy or another related field, an active center creates a space where they can gain much broader experience with more kids, new mentors, and different types of programs. Working with different needs builds overall skills, and better equips a clinician to be more effective with the next child they help. Different work environments do that too, and we plan to make the Big New Center an absolutely awesome one.
The third audience we think about when planning a project like this is our supporters. Donors are rarely thought of as a population with needs, but a simple analysis reveals a few noteworthy problems to solve. If we start with the assumption that donors give money to a charity because they believe in the cause, we can also assume that they believe in the work of that particular organization relative to that cause. If I think helping families with autism is important, I would donate to AZA United because I believe in how they do that. If I didn’t think an organization does good work, I would probably assume any money I donate is wasted, and therefore I’d pick another charity to support. So this begs the question – how do donors determine if the organization actually does good work for the cause they care about? Nonprofits spend great resources and energy to communicate their impact for exactly this reason. That might be enough for some, but donors with more substantial funds are likely interested in more details – what difference does it make if I donate X amount versus Y amount? Where are my dollars actually going? That’s a fair question, since many charities ask for help and philanthropists must choose how to maximize their own impact as a community change agent. Fundraising seems to work best when there are specific projects or goals, especially when the result is easily measurable. New buildings work well for that, but what happens when the building is done but the real work is just beginning? The need for support hasn’t ended, although the goals may be more fluid and harder to communicate. The worst situation, of course, is when donors contribute based on a promise but never see those results. Perhaps there are no hard feelings, but the bigger issue is the donor’s decline in motivation to continue supporting that organization over time and engaging others to join the cause. To be successful in the long-term, our philanthropic supporters need to be increasingly engaged, not just passing through for a year or two before they move on to something else.
This is an area where we are ready to improve. For the first time, we have something big and tangible to raise money for – a Big New Center! The more significant change, though, is how we are conceptualizing our relationship with those who support us. Not just donors, but partners. Perhaps even investors. This past year I’ve had the opportunity to connect with leaders in all kinds of industries outside the nonprofit sector, unrelated to the field of autism services. One thing that really grabbed my attention was the mindset of big-thinking venture capitalists. Contrary to my preconceived notions, they are not solely interested in making unspeakable amounts of money. They want vision. They want to be part of a spark that changes the way we live, to build a better future for the world. To get there, they have very high expectations of the company’s leaders. They want ambitious goals, frequent updates, real-time data, and direct input on big decisions. They are not just invested through their money – they are invested in a dream. They believe in the power of this idea and they want to see it happen. That’s where I see the parallel to philanthropy. If donors have significant funds to invest, and they choose to contribute them to us, they should be able to have that kind of an experience – a constant opportunity to be involved and informed. The goals should be clear, reports should be frequent, and results should be delivered. That is how we want to engage our “investor” donors as we embark on this mission of statewide expansion, building comprehensive services for all ages, in pursuit of our larger mission to help as many families as possible with individualized supports.
I’ve spent a lot of time this year learning and reflecting on the concept of organizational culture. More than a buzzword, culture describes the attitudes, beliefs and behaviors that define who you are as a collective group of people in your quest to create this thing that is larger than the sum of its parts – the organization. Culture is arguably the most important competitive advantage that for-profits need to develop, and it’s just as critical for nonprofits to maximize our mission impact and long-term sustainability. What’s interesting about culture is that it develops two ways – organically and intentionally. As we at AZA United prepare for the level of growth and expansion that we envision, it is more important than ever that we understand who we are and what we want to be.
As a guide, we have identified 4 values that exemplify the culture we believe in, and they fit perfectly within our goals for expansion. The first is to Grow with Purpose – we’re not expanding just to be bigger, or to get ahead of the competition. We’re doing it in a way that enhances the mission impact we exist to fulfill, and to lay the foundation for that growth to continue. The next is to Be of Service – we’ve taken time to talk with, listen to, and understand the needs of our stakeholders, and every part of the plan for this new center will be focused on serving those needs. The third is to Stay Informed – we hope to share our goals, progress, decisions and questions all along the way, so that what we are building is based on feedback and information that matters to the people we’re building it for. The last is to Bring People Together – ultimately, that is the most important goal of all. We know we can do this, but we also know that we can’t do it alone.
If you’d like to help or get more involved with AZA United’s expansion project, contact us anytime. More announcements and opportunities will be shared soon!
Click here to make a donation and support our efforts to build a Big New Center in the East Valley.