Being the parent of a child with disabilities is difficult enough. It takes tremendous time and energy just to promote their health and create a comfortable, supportive environment for them. How can parents find time to advocate for change in the systems that affect their kids? Where is the best place to intervene? How can parents work together to support their children’s future, and that of other kids to follow? How can one generation of parents, once engaged and skilled at advocacy work, pass the mantle to the next generation?

These challenges brought Paula LaLinde from the University of Miami to an executive program at Harvard University’s John F. Kennedy School of Government, where she was introduced to the concepts and practices of Adaptive Leadership. It resonated with her, given her experience promoting systems change in schools, medical and community institutions. A co-founder with Isabel Garcia of the parent advocacy group, Parent to Parent, Paula understood that parents have no authority in the systems they are trying to change. It puts them into unfamiliar territory where they lack contacts and skills and where it is easy to feel one is alone in the battle.

That was how and why parents sought each other out to form Parent to Parent as well as other organizations and to learn from one another. It also underlies their affiliation with the Mailman Center for Child Development, part of the School of Medicine’s Department of Pediatrics at the University of Miami. After learning about Adaptive Leadership, the Mailman Center and Parent to Parent asked CLA for help in designing a program that would give parents the leadership skills and the tools to become more effective advocates. The sponsors identified a pool of parents to become Fellows, most of whom had little experience with advocacy, and designed a two-day introductory program, followed by six months of leadership consulting. Another aspect of this engagement was to identify individuals who could work with other groups of parents and eventually assume leadership of the organization.

We quickly discovered that the skills and practices of Adaptive Leadership could—and needed— to apply to the specific adaptive challenges facing the Fellows. These ranged from how to develop a respite care system to how to make schools follow through on the education plan for individual children. As a result, we also worked with this group to link Adaptive Leadership to action plans on these issues, which were then used in the final workshop of the six-month program.

One year into their work with CLA, both general participants and those who will consult to others have become adept at helping parents understand the importance of recognizing and addressing adaptive issues, not just focusing on technical problems. They have put many of the practices of Adaptive Leadership to work, such as learning to partner with others, identifying where opposition might come from and protecting and anchoring themselves.

This last practice is especially important for Parent to Parent members and brings Adaptive Leadership to a very personal level. As individuals, these parents must make difficult choices in how they expend their time, energy and resources. They must balance the needs of a child with disabilities with other family demands and the need for dedicated advocacy on a broader scale.

The work of Parent to Parent is ongoing, but Adaptive Leadership is providing new tools to lead future efforts.“Witnessing the Fellows' individual and collective achievements over such a short period of time has been an inspiration for all of us involved in this project,” says Paula LaLinde.“We now feel confident that there will be the next generation of parents at the helm, who will be even more skilled at implementing change for children with disabilities."