The Need for The National Leadership Consortium on Developmental Disabilities

There is a Leadership Crisis in the developmental disabilities field that is a result of increasing demand for high quality, responsive, services for adults with developmental disabilities occurring at the same time as the leaders of organizations and programs dedicated to the provision of those services are retiring in significant numbers.

The field of services and supports for people with intellectual/developmental disabilities is facing a crisis on many fronts. As services and supports for people with intellectual/developmental disabilities have grown, the field has not purposively produced leaders for inclusive, person-centered, support services for adults. Most of the leadership training that does exist is in special education or health care, yet the vast majority of people with intellectual/developmental disabilities are adults who live in their own communities. We largely have left leadership development to chance -- there has been no focused effort toward developing both the skills and values required to be an effective leader in organizations that serve adults with intellectual/developmental disabilities and their families. Many leaders of disability organizations are reaching retirement age and there is not a “next generation” of leaders ready to move into these positions.

The Importance of Leadership and Succession Planning

Community-based setting

Effective leadership is critical to the quality of supports people with disabilities and their families receive and the field of services and supports for people with intellectual/developmental disabilities is facing a leadership crisis. The federally-funded Research and Training Center on Community Living at the University of Minnesota reports that in 2005, over 344,000 individuals with developmental disabilities were living in small, community-based settings; this is over seven times as many people as were living in such settings in 1982. A recent study of almost 2,000 nonprofit executives from across the country found that three-quarters of them did not plan to be in their current job five years from now and one in ten current executives plans a job change within one year. A recent study of almost 2,000 nonprofit executives from across the country found that three-quarters of them did not plan to be in their current job five years from now and, one in ten current executives plans a job change within one year. The study shows that less than a third of these nonprofit CEOs have discussed succession planning with their boards. In addition, the study concluded that small and mid-sized nonprofits lack the staffing depth to develop leaders from within their organizations. Only half of the CEOs who were involved in succession planning of some kind said that they were actively developing a future Executive Director candidate from within their organizations.1

With the planned exit of over 60% of the leadership of nonprofits over the next five years2, there is a critical need to develop new leadership that can respond to the growing demands for quality services from families, states, and people with intellectual/developmental disabilities. The provision of quality leadership for developmental disability agencies and advocacy groups is both a social justice issue and a practical one.

In 1990, over 131,000 people with intellectual/developmental disabilities were held in inhumane conditions in large, state-run institutions. By 2013, major efforts toward deinstitutionalization resulted in only 34,000 individuals continuing to live in impersonal, congregate settings such as these. It is a matter of significant concern, however, that over that same period, neither nonprofit agencies, state or federal agencies, nor private programs have purposively developed leaders for for inclusive, person-centered, individualized supports for adults.

At a practical level, the population of adults with significant disabilities is growing. In the not-too-distant past, a great number of people with significant developmental disabilities died before they reached their 30th birthday. Today, individuals with disabilities are living well into their 60s, 70s, and even beyond. Unfortunately, while the number of adults with disabilities is growing exponentially, and more and more of those individuals are being served in their communities, there has been no focused effort toward developing the skills and values of potential leaders of organizations that serve adults with developmental disabilities in community settings across the United States.

In addition to the increasing life expectancy of persons with intellectual/developmental disabilities, those who have traditionally provided the most support for this group are aging and dying. In a 2004 study, researchers at the University of Colorado determined that over 700,000 adults with developmental disabilities in 2002 were living with caregivers who were 60 years of age or older. These are individuals who twenty or thirty years ago would have been institutionalized. The generation of people with disabilities that families chose to raise at home are now middle-aged and their parents are aging. These individuals are entering the service system in their forties, fifties, and sixties and need quality services. The addition of this population puts pressure on an already strapped system. Rizzolo and her colleagues concluded, “The likelihood of older persons with developmental disabilities living into their own retirement and outliving their family caregivers has increased substantially in recent years this has stimulated a growing demand for additional services and supports.”

Currently, administrators do not have relevant tools or resources for recognizing and building leadership potential in their employees. Many organizations simply promote people who demonstrate some leadership ability to jobs at the next level. While promoting someone from a direct care position, to a mid-level manager's position, and then to a top-level management position may communicate confidence in an employee's abilities, moves up the career ladder like these do not necessarily bring with them new skills, broader understandings, or the flexibility or maturity needed to achieve leadership potential. These must be carefully cultivated.

Poorly planned and managed, a change in leadership can be damaging to an organization and the people it supports. Well-planned, a transition to a skilled and creative leader who has a strong values-base can breathe new life into an organization that has settled too far into complacency. Most of the agencies providing services to people with disabilities across the country haven't begun to identify the potential leaders of tomorrow from within their ranks nor have they seriously considered how to support and develop members of their teams to become effective leaders for the future.

Good Leadership = Good Lives

When you ask people who are supported by disability agencies what they would change, not surprisingly, answers revolve around wanting to have fulfilling connections with friends and family; to be in charge of their own lives; to have romantic relationships or marry; to live with people they care about and who care about them; to live in a good and safe place; to have families of their own; to have enough money to do the things and have the things that are important; and to choose to do what one wants, when and how he/she wants to do them. These are the things that make for a good life and these can only be achieved when organizations are run by leaders who understand that achieving these kinds of goals for the people who are supported are the true measures of success. Clearly the ability of an agency to support people well is determined by the organizational culture created by top leadership.

The establishment of The National Leadership Consortium was premised on this question, what would the impact be on the lives of people with disabilities if, in the future, there were a rich supply of highly-skilled leaders who were passionate about quality, had the management and financial skills needed to run solid not-for-profit businesses and government agencies, were capable of assembling top-notch teams of caring staff, and had a solid commitment to progressive values that assured lives of meaning and impact for the people who chose to receive support? That is, what if we didn't leave the shaping of the philosophies and understandings of the future leaders in this critical field to chance, but rather were able to provide support, training, and mentoring opportunities to assure approaches that would value people with disabilities and offer options that encourage full and meaningful community participation.

1 Bell, J. & Wolfred, T. (2006). Daring to lead 2006: A national study of nonprofit leadership. San Francisco: CompassPoint Nonprofit Services
2 Change Ahead: The 2004 nonprofit executive leadership and transitions survey. (2004). Baltimore, MD: The Annie E. Casey Foundation.
3 Yang, Q., Rasmussen, S.A., & Friedman, J.M. (2002). Mortality associated with Down's syndrome in the USA from 1983 to 1997: A population-based study. Lancet 359 (9311):1019-25.
4 Rizzolo, M., Hemp, R., Braddock, D., & Pomeranz, Essley, A. (2004). The state of the states in developmental disabilities. Denver, CO: University of Colorado.
5 Ibid., p. 56.