Feature Issue on Person-Centered Positive Supports and People with Intellectual and Developmental Disabilities

The question we hear all the time is “Are great leaders born or made?” The answer is in three parts:

1. Yes
2. All are born
3. Most are made 

Leadership is a skill set that can be nur­tured, trained, developed, and improved. As Kouzes and Posner (2012) point out:

• Leadership is an observable set of skills and abilities that are useful whether you are in the executive suite, on the front lines or in between. You can be a leader in an organization (or from outside an organization) without being the CEO, top dog, Executive Director, President, etc.
• The instrument of leadership is the self. Leadership is an affair of the heart more than it is an affair of the head. And, as I said above, with practice, mentoring, training, coaching and development, the skills to be a leader can be honed, improved and refined.

To see my favorite video about leader­ship, go to “Drew Dudley - Leading with Lollipops” . Drew Dudley demystifies leadership. We have a tendency to think there is some magic, some for­mula, some innate ability that makes some people leaders and other people not. It isn’t so. Leaders are as different from each other as you would expect in any other way that we classify people…with a few excep­tions. Good leaders clearly communicate, through words and/or actions, what they stand for, who they are, and compel us to pay attention to what is important.

Leaders create and “sell” the vision for their organization, but they don’t (or shouldn’t) create the vision by themselves. The most effective leaders work with their organization and community stakeholders, specifically including people they support and families, to create a vision based on the values we find in the Convention on the Rights of Persons with Disabilities (CRPD) and in IDEA, the ADA, the Olmstead decision, Section 504 of the Rehabilitation Act, the Developmental Disabilities Act, and in both the Declara­tion of Independence and the U.S. Con­stitution as well as state-specific laws and regulations. We have magnificent laws and policies and every day leaders strive to uphold them. Alas, others disregard and block them on a regular basis.

For so many people with disabilities, their days are spent doing things they do not like, or that bore them, or both. We all need a reason to get out of bed in the morning. Something to look forward to. The leadership task is to help create these opportunities and offerings. If the leader is successful in creating such environments, helping people find what they want to do, what they are good at and what they enjoy, the need to express oneself with “behav­iors” is greatly diminished.

People with disabilities may live with peo­ple with whom they did not choose to live and live in a place that is not where they might want to live. Or they may live with their families, as adults, but are still treated as they were when they were a child. In all these circumstances, the situations in which they find themselves cause them to express their discomfort, displeasure or boredom by doing things that are euphe­mistically called “behaviors.” Far too often we react to challenging behaviors with strategies that do not promote quality of life, are not person-centered, and end up using procedures that restrict people in an attempt to produce a change in behavior and control the person.

One of the most important things a leader can do is to create, within the context of the organization in which they work, a culture and climate of dignity and of respecting the rights and humanity of people with disabilities with whom the organization works. The leadership task is finding and removing the obstacles to creating such an environment, working with people supported, staff, boards and volunteers. Leaders work to remove barriers, overcome obstacles, and employ creative tension within the organization to help it change, adapt, and modify itself to meet the needs of those who count on them for support. Good leaders obviate the need for practices that are restrictive, aversive or deprivative.

So how do we find these leaders? Do they exist in my community? I think they do, though as a professional field we spend far too little effort mentoring, developing, training, and supporting future leaders. Most of the federal support for training leaders is in Special Education and Mater­nal and Child Health, mostly for historical reasons. Yet most people with disabilities are adults, not children.

We know from the research on non-profit and government leaders that the majority of existing organizational leaders see retirement on the not too distant hori­zon. To respond to the need for effective leaders we created the National Leadership Consortium on Developmental Disabilities at the University of Delaware, a consortium of a dozen national organizations inter­ested in addressing this looming shortage. We offer a week-long, industry-specific executive development program to en­hance the effectiveness of people working in disability organizations. Our leadership development work is focused on three major components: values and vision, skills necessary to make those values and vision real, and personal leadership development strategies and techniques. To date 1,000+ people have participated in our week-long leadership institutes from 45 states, two Canadian provinces and 20 countries worldwide. But affecting change with a handful of people at a time is not enough. 

Disability and other human services organizations and state governments need to pay attention to the issue of leadership. There needs to be a formal effort in each state to grow the next generation of leaders focused on inclusion, self-determination, positive approaches, and person-centered practices. It cannot be left to chance and does not happen by accident. It takes resources, but the resources needed are a very small percentage of overall budgets. There are many graduate programs to train organizational managers and leaders. Any decent program will do for the basic skills. But generic leadership programs won’t focus on managing change to provide person-centered, inclusive services. Local, field-focused efforts are needed to supple­ment such programs.

One of the skills we need to assure that people have is ways to use data to manage services and how to assure that data collection and analysis is built into programs, not tagged on as an afterthought.

We also want people to have access to the best research available on practices in person-centered planning and supports, positive approaches, inclusion, self-determination, and full participation in the community. Sadly, most published research is not read by those leading service organizations. 

Developing and supporting leaders is vital to creating organizations, policies, and programs that help people get the lives they want. We need to take this issue on positively, proactively and affirmatively. It is too important to leave to chance.