Leadership comes in many different forms. Sometimes when we hear the word leadership we may think exclusively of an elected leader or someone whose job it is to lead an organization.
But as parents of children with disabilities or special health care needs, we have all used leadership skills. For example, have you called the doctor’s office to make an appointment, gathered people together for a celebration, or used the Internet to learn more about a topic? This is the beginning of leadership for families. These are all skills that are used by leaders. Many times we don’t realize what we do in our everyday life displays leadership skills. Maybe some of you are aware of your skills and have been making a difference in your community. The following illustrates the different levels of engagement that families and individuals with disabilities can follow:
Most families and individuals start at the personal level – building the skills, tools, and knowledge to advocate for yourself or someone in your family. You may build your advocacy skills by attending a PRO workshop or Family Leadership Conference, participating in an IEP, or requesting services.
Supporting others is a great way to pay it forward and share your knowledge and expertise with others. There are many ways to do so, including educating future doctors as a Family Faculty member for our Families as Faculty program by sharing your family’s experiences with them or being trained and serving as a mentor for another family matched through our Parent to Parent Program. Other family members help facilitate support groups in their communities.
Other individuals may want to be involved in changing the very systems in which they find themselves, including health care and education. There are many opportunities to participate in systems change in New Mexico. In order to prepare for impacting systems, PRO offers a national training entitled Serving on Groups. PRO also invites family members to the New Mexico Legislature annually to participate in sharing your story with legislators and advocating for what your family needs.
PRO’s Family Leadership Academy takes place annually right before our Family Leadership Conference and offers a way for families to identify their own leadership preferences and ways to use their leadership skills at home and within their communities.
Here in New Mexico, families have made an incredible difference for individuals with disabilities. For example, Polly Arango (1942-2010) was a New Mexico parent and advocate who helped found PRO and the national organization Family Voices who helped improve care for families of medically fragile children. Family members of individuals with disabilities were also instrumental in helping New Mexico develop a Medically Fragile waiver and joined individuals with disabilities in advocating for IDEA and ADA. Your voice is important!