Stanfort J Perry of AHRC Nassau On 5 Things You Need To Know To Successfully Lead A Nonprofit Organization
Be ready to share it. Change does not happen in isolation. You should want to share this mission with others. Make your mission theirs too and together start working toward short-, mid- and long-term goals.
As part of my series about “individuals and organizations making an important social impact”, I had the pleasure of interviewing Stanfort J. Perry, CEO of AHRC Nassau, Citizens Options Unlimited, Inc., and Brookville Center for Children’s Services.
For more than 30 years, Stanfort J. Perry has dedicated his career to advancing the independence, health and safety of people with intellectual and developmental disabilities. Perry leads one of the largest networks of nonprofit disability services agencies in the nation as CEO of AHRC Nassau, Citizens Options Unlimited, Inc., and Brookville Center for Children’s Services. Believing in the power of collective action, Perry also actively serves on the board of the New York State Industries for the Disabled (NYSID) and as Chair of Care Design New York’s Board of Managers.
Thank you so much for doing this with us. Before we begin, our readers would like to get to know you a bit more. Can you tell us a bit about your “backstory”?
Thank you for the opportunity to share some of my story and insight. I hope it inspires more people to take action and get involved in the voluntary sector.
I strongly believe that sharing your time and talent with the local community is how change happens. My earliest memories are of my childhood in 1960s Mississippi — the beating heart of the civil rights movement. In the face of so many challenges, I overwhelmingly remember there being such positivity and commitment to doing what’s right. Understanding the power of a shared mission and engaged community, I joined the socially active fraternity Alpha Phi Alpha and started my career as a Direct Support Professional in a group home in upstate New York.
More than thirty years later, I remain dedicated to creating new opportunities for children and adults with developmental disabilities and also participating in community outreach through the Alphas.
Can you tell us the story behind why you decided to start or join your nonprofit?
Disability rights, as we understand them today, are still relatively new. Seventy-five years ago, AHRC Nassau was founded by a handful of families who refused to institutionalize or hide children with developmental disabilities from the world. It was wonderfully audacious and brave to organize in this way. These parents were ready to get things done and did so at a time when children with disabilities had no right to attend public school and adults with disabilities had no right of equal access.
Fast forward to today, what started as a small group of families has become a $269-million family of organizations offering a lifetime of services. The legacy of the nonprofit’s founding families remains strong. AHRC Nassau continues to be family led at the board level. Also, today’s generation of self-advocates and family members continue to advocate for the necessary funding and programs needed to create a truly inclusive community where people of all abilities can participate.
Putting the spotlight on the people we serve and their families is important. I joined AHRC Nassau, which is a chapter of The Arc New York, about twelve years ago, ready to share my skills as an experienced manager and program developer to advance this community’s mission. I have dedicated my career to disability services and can share with you — the urgency of a truly compelling mission like this — makes heading into the office each and every day deeply meaningful.
Can you describe how you or your organization aims to make a significant social impact?
Encouraging the “hard” conversations, education, and opportunities to explore different experiences of the world is how AHRC Nassau addresses ableism. As we work toward a more inclusive future, transparency and new points of connection are needed to address the underlying issues that isolate people with developmental disabilities from the wider community.
Inclusion is the first step to belonging. In the public sector, AHRC Nassau is leading the charge by modeling how to increase the participation of people with developmental disabilities in the community. As part of a $750,000 grant from the New York State Council on Developmental Disabilities, AHRC Nassau is helping re-center the conversation by facilitating Diversity, Equity & Inclusion (DEI) trainings with self-advocates, families, direct care providers, and disability agency executives across New York State. As part of the project, the agency is also recruiting and engaging regional, statewide stakeholders to create a Community of Practice (CoP) advisory team dedicated to creating accessible and authentic curricula reflecting the lived experiences of people with developmental disabilities within DEI initiatives.
Seeing is believing. For our neighbors on Long Island, AHRC Nassau welcomes people of all abilities to share interests and experiences at the Thomas S. Gulotta Wheatley Farms & Arts Center in Brookville, NY. Through art, nature and wellness initiatives, this program celebrates neurodiversity as well as inclusive physical activity so people of all abilities can make joyful contributions as equals — as fellow artists or nature enthusiasts. Wheatley Farms is in its third phase of development. In the future, we seek to welcome more Long Islanders to experience this authentically inclusive space, the value it brings to the community, and how having different abilities is a part of the human experience.
Without saying any names, can you share a story about an individual who was helped by your idea so far?
Every day, I receive phone calls from people supported by AHRC Nassau and their families. I like staying connected and always learn something new. One story I will never forget comes from a person who is a dear colleague and self-advocate. Their childhood was spent hundreds of miles from where AHRC Nassau is based in Nassau County, Long Island. Due to the lack of Early Intervention Services and understanding of disability, this person spent years unhoused and doing anything needed to make ends meet. They, like many people we serve, are a survivor. With essential supports and services, this person is employed, lives independently, advocates for disability rights, and mentors other people with developmental disabilities to use their voice to achieve their goals. Above all, they are leading the life they choose!
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
Absolutely: advocate, advocate, advocate! You can bring attention to these issues through our one-click campaign at www.ahrc.org/advocate to alert legislators to the important needs in the disability community. Truly, the disability services sector is experiencing historic understaffing and underfunding — but also a profound need for new models and ideas to create momentum forward.
Families at AHRC Nassau have been advocating for 75 years. However, the funding streams were primarily developed when disability was perceived to be a sickness — not a civil rights issue — and they continue to inform how disability services operate. Hopefully, the next 75 years will re-orient federal and state funding structures to better meet the needs of people with developmental disabilities and to ensure fair and equitable wages for Direct Support Professionals (DSPs).
Right now, DSPs, who offer hands-on support for some of the most intimate parts of a person’s life, struggle to make ends. For New York-based DSPs, “low pay is causing nearly half to experience food insecurity and unstable housing conditions while providing critical life support for people with disabilities. Low wages disproportionately affect women and people of color, the majority of the DSP workforce,” according to a snapshot report of a study conducted by Miami University and commissioned by New York State Disability Advocates.
The responsibility and skillset needed to be a successful DSP are not commensurate with state-funded minimum wages. Staff funding is a matter of human decency as well as the long-term sustainability of disability services. Nationally, the need to fill openings for DSPs is urgent and ongoing.
At the federal level, including DSPs in the Standard Occupational Classification (SOC) by the U.S. Bureau of Labor Statistics will advance the collection, calculation and dissemination of data regarding DSPs’ important work. As the cornerstone of the I/DD movement, it is vital that DSPs’ work be acknowledged at the federal level, similar to other professional caregivers like Home Health and Personal Care Aides. Such recognition will ideally lead to the important role of DSPs being more widely understood and better funded.
Stabilizing the workforce is also part of the equation for Home- and Community-Based Services (HCBS). Primarily funded through Medicaid, HCBS, as the name suggests, offers supports for people with disabilities to live independently at home and in the community. According to The Arc of the United States, “there isn’t enough funding in the Medicaid program to support everyone who needs it. This means nearly 700,000 people are stuck on waiting lists, and many live segregated lives in the archaic institutions that still exist in 33 states.”
The only way to address these issues is to let elected officials know they matter to you!
How do you define “Leadership”? Can you explain what you mean or give an example?
Leadership is having a mission, the fortitude to realize it, and the understanding of how to share it with others to create new outcomes. So much is about building trust and authentic rapport. Team members across the organization should know their honesty is appreciated, that new ideas or proactive feedback are welcome, and that their contributions matter. Ideally, a leader also sparks interest in exploring your own potential — knowing that you are supported to pursue new goals or leadership roles.
My mother, Essie Savage, believed I could do anything as long as I actually did the work. She encouraged me as a young man to follow my interest in leadership at the Calvary Baptist Church in Buffalo, New York. It was there that I learned all the principles of good governance and effective management. This led me to be elected to the role of District President of the Baptist Congregation across the region. When I was first elected, I was in my twenties and remember feeling out of my depth. I shared concerns with my pastor, Rev. L.T. Boyce, who cut to the quick of the matter, “Always remember they may be older and more experienced, but you’re in charge.” I never forgot that. I was making decisions, but had the opportunity to be informed and inspired by the insight of more experienced leaders.
There’s always more to learn. As a nonprofit leader, I can assure you nonprofit projects are more interesting when you invite subject matter experts and insightful people of all abilities to invest their time. The outcomes may be different and ultimately more impactful than you’d think. I think it’s why I’m such a strong believer in the power of a strategic planning process. Yes, management and a seamless planning process are important parts of leadership, but only insofar as they create a productive working environment where many can shine.
Based on your experience, what are the “5 things a person should know before they decide to start a nonprofit”.
That’s a great question. Having spent my career working in the voluntary sector, here’s what I can share:
1.) Have a mission. Anyone interested in starting a nonprofit should see a need in their local community or society — and see no other path forward than working toward that goal.
2.) Be ready to share it. Change does not happen in isolation. You should want to share this mission with others. Make your mission theirs too and together start working toward short-, mid- and long-term goals.
3.) Be joyful. Every day may not be on cloud nine. However, if you can find joy in the tasks, working beside others, and seeing changes big and small, it goes a very long way to being successful. . . and feeling good while doing it.
4.) Be prepared to step back. Ideally, your nonprofit will grow and take on a life of its own. Be prepared to let go and welcome experts, people with lived experiences, and other unique distinctions to contribute and independently lead parts of what began as solely “your” nonprofit.
5.) Be patient. Change can take time. As long as you’re seeing progress and valuable outcomes/feedback, stay the course. You never know when the next person you meet or the grant you apply for will be the missing piece meeting your nonprofit’s goals.
We are very blessed that very prominent leaders read this column. Is there a person in the world who you would like to talk to, to share the idea behind your nonprofit? He or she might just see this, especially if we tag them. 🙂
What an incredible opportunity. If I could pick up the phone and call anyone professionally, it would be Geoffrey Canada, founder of the Harlem Children’s Zone (HCZ). He’s a true innovator who authentically cares about the outcomes he creates. His “cradle-to-career” vision, balancing social services with education, is extraordinary. Through his leadership, Canada helped generations of children and families thrive. It’s my goal to do the same and to leave AHRC Nassau and our family of organizations as a proud link in a bigger chain of independence and accessibility.
Can you share your favorite “Life Lesson” quote? How is that relevant to you in your life?
I often think about what future we’re collectively working toward and how everyone can contribute. I continue to appreciate the modesty and accessibility of a quote by Br. David Steindl-Rast, paraphrasing Raimundo Panikkar: “The future will not be a new, big tower of power. Our hope in the future is the hope into well-trodden paths from house to house.” It’s about equity, energy, and the accessible pathways we forge as individuals and as community members. For me, it’s a call to action. Everyone is called to participate in our shared community.
How can our readers follow you online?
I’d welcome the opportunity to connect on LinkedIn. I also write a monthly column in AHRC’s eNewsletter. To sign up, please visit www.ahrc.org/mailing-list
This was very meaningful, thank you so much. We wish you only continued success in your mission.
Stanfort J Perry of AHRC Nassau On 5 Things You Need To Know To Successfully Lead A Nonprofit… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.