The Leadership Crisis in the Intellectual/Developmental Disabilities Field

Effective leadership is critical to the quality of supports people with disabilities and their families receive. The largest study of non-profit management to date determined that one in five nonprofit executives founded the organization that he or she now heads and 28% of CEOs of nonprofit organizations have been in their positions for ten years or more. Fully two-thirds of current CEOs surveyed anticipate remaining in their positions for five years or fewer.1 Because the vast majority of community agencies serving people with intellectual/developmental disabilities were established in the late seventies or early eighties, many are still led by the individuals who founded these organizations. Many leaders of disability organizations are reaching retirement age and there is not a “next generation” of leaders ready to move into these positions.

A study by the University of Delaware that was specific to community intellectual/developmental disability agencies found that over 50% of the chief executive officers of these service agencies did not have a succession plan for their organization.2 Because the vast majority of community agencies serving people with intellectual anddevelopmental disabilities were established in the late seventies or early eighties, many are still led by the individuals who founded these organizations. Many leaders of disability organizations are reaching retirement age and there is not a “next generation” of leaders ready to move into these positions. As one CEO put it, “I’m ready to think about retirement, and we’ve got no one on the bench.”3

A study by the American Association on Intellectual and Developmental Disabilities found a significant gap at the executive level in training programs on leadership and management in the developmental disabilities field.4 When professionals in the field were surveyed about the need for a comprehensive program in leadership for developmental disabilities executives, the response was overwhelmingly positive. Ninety-four percent of respondents indicated that such a program is needed. The researchers concluded that, "There is very significant support, for a new, comprehensive program on leadership and management." (p. 16). Almost without exception, the leadership crisis has been a major topic of focus at recent conferences for developmental disability professionals.

While the disability field is rich with effective and creative leaders, almost all achieved their skills through some combination of luck and opportunity – they fell into a great job, formed a relationship with a forward-thinking mentor, or arrived at effective leadership approaches through trial and error. An important focus of The National Leadership Consortium is to conduct on-going research into exactly what it takes to create top-level leaders in the intellectual/developmental disabilities field and to make those skills and opportunities available to people across the country with demonstrated leadership potential.

While some generic non-profit management and leadership courses are available nationally, none exist that are specific to leaders in the complex and changing field of developmental disabilities services. The National Leadership Consortium on Developmental Disabilities is significantly affecting the quality of supports to which people with disabilities have access.

An additional problem that threatens the quality of developmental disability services nationally is the lack of top-level leadership training and support for the directors and executive staff of state departments of developmental disabilities. These departments in each state are responsible for setting funding priorities, establishing public policy, and overseeing the quality of the services that are delivered. The turnover is great. The National Association of State Directors of Developmental Disabilities Services has stated that the average tenure of a state director of developmental disabilities services is about two years and that there is over 20% turnover annually in the top position in state developmental disabilities departments across the country. When the directors of these departments change, top-level staff often change as well. As a result there is a need for knowledgeable support and training for new chiefs of state departments of developmental disabilities and their executive level staff on an on-going basis.

1 Change Ahead: The 2004 nonprofit executive leadership and transitions survey. (2004). Baltimore, MD: The Annie E. Casey Foundation.
2 Eidelman, S.M. & Brady, L.T. (2006). Crossroads for leadership in the disabilities field: Preparing the next generation of leaders for the 21st century. Newark, DE: University of Delaware.
3 CEO and founder, large nonprofit providing residential and employment supports in four states.
4 American Association on Mental Retardation. (2005). Training for mental retardation professionals: Report on interviews with executives. Washington, D.C.: AAMR