Many CEOs of organizations serving people with intellectual or developmental disabilities (IDDs) have poured their hearts and souls into their work for decades.
Many CEOs of organizations serving people with intellectual or developmental disabilities (IDDs) have poured their hearts and souls into their work for decades. Some of them were founders, often drawn to the work because of a family member needing specialized care. We owe a debt of gratitude to these individuals.
Unfortunately for these organizations, many long-term, iconic leaders are ready to move on. In fact, I expect a wave of CEO retirements in the coming years. This is definitely a loss to the industry, but also an opportunity for a new brand of leaders to emerge. Before rushing to identify replacements, these organizations and their boards must take stock of the changing dynamics of the sector and the qualities now needed to lead within it. Whereas past leaders could get by on purpose and passion, today’s CEOs of IDD-serving organizations must be chief executives in the true sense of the phrase, having broader, evolved skill sets to ensure their organizations survive and thrive in a highly complex and challenging environment.
I have supported the recruitment of IDD-serving CEOs for more than a decade and have witnessed this shift toward a more robust and sophisticated role. New CEOs will still have a personal connection to the mission but must also be proven leaders with exceptional managerial skills and business savvy (if not MBAs or degrees in nonprofit leadership). These sentiments were reinforced by recent conversations with two leading CEOs fairly new to their roles – Karen Knavel of Pathfinder Village in Edmeston, New York, and Ken Berger of Spectrum360, based in West Orange, New Jersey. Their input informs the advice in this article on how boards can identify the right CEOs for their needs and then support their chief executives as they begin their tenures.
First-hand Insights
Joining Pathfinder Village in 2024, Karen Knavel replaced a leader who had been in the role for over 20 years. While CEOs like Knavel are as mission-focused as ever, they must approach their work differently, as if running a business. There is a much more sophisticated legal and regulatory environment for IDD-serving organizations today, Knavel notes. Meanwhile, families, funders, and the surrounding community have greater expectations than ever before and expect to be informed on how the organization is being run and achieving its mission. Today’s CEO must serve as the chief advocate and public relations expert for the organization, she says, helping to shape public perception around its value and impact.
Further, today’s CEOs must be data-driven, she says, due to the heightened demands on tracking, reporting, and recording organizational activities and finances. Hiring staff is more complicated today as more robust labor laws require background checks, certifications, and extensive training to prepare these professionals to deliver care in line with regulations and accepted standards of care. There is also a need for continued advancements in the use of technology, especially around data security for service recipients and employees.
“Being a CEO today has become so complex that it’s almost impossible for one person at the top to manage it all,” Knavel says. CEOs must be skillful managers, communicators, and delegators, establishing a culture of excellence while forging trusting relationships with colleagues and stakeholders. CEOs must hire the right teams, giving those individuals the opportunity to speak up and challenge the CEO and board for the good of the organization. “As CEO, I set the tone for excellence and consult with my staff when making executive decisions and thinking through the consequences,” Knavel adds. “We’re all in this together, a team of experts committed to a common goal.”
Berger of Spectrum360 succeeded an industry icon who led his organization for 40 years. For him, it is the external environment (including legislators, community partners, funders, and families) that has dramatically changed and which he must deftly navigate. Regulations are a constant focus, requiring him to anticipate changes (e.g., to Medicaid) and translate their impact for others.
Like Knavel, Berger takes a data-driven approach to his job. In particular, a CEO must have a firm grasp of how policies affect funding and reimbursements. “Times are tight for every nonprofit today,” he says. “We can’t just rely on our mission. We must show our donors and partners that we run a first-class organization to ensure their continued support.”
To be effective, CEOs like Knavel and Berger must have support and strategic guidance from their boards of directors. What follows are suggestions for selecting and supporting the CEO and leadership team:
How Boards Can Help: Hiring the Right Person
How Boards Can Help: Supporting the CEO
Final Thoughts
For organizations serving the IDD community, recruiting leaders who are drawn to the mission is critical. In today’s environment, however, CEOs have to function as true chief executives with broad and deep skill sets. These multifaceted leaders are hard to find, but once on board, they can transform organizations and sustain long-term success in challenging times.