In my over 50 years as a professional disability advocate, I have been involved in more initiatives than I can count. Many of these I either help developed and many others that were developed by other colleagues and i was invited to play a role.
All of these initiatives have had an impact, but some were (and are) more powerful than others. We know that parity for individuals with disabilities and their families is a long hard climb and that we still have a long way to go, but there is one initiative, that was conceived by the Governor’s Council on Developmental Disabilities in MN, that has stood the test of time and continues to make an incredible impact - and that is the Partners in Policy-Making effort, developed in 1987.
The PIP initiative has made such an impact because it has been adopted by 35 states and has spread to many international settings. It is designed to introduce families who have children with disabilities, and self-advocates (individuals experiencing disabilities) to the myriad of programs, projects, and policies that impact the disability experience.
I have had the great pleasure to participate in the PIP programs for many years now, in many states. In just the last 6 months I have been involved in PIP programs in TX, NM, DE, OK, FL and LA, looking at the importance of understanding community aspects, and the key ingredient of social capital (relationships) in our communities. In all of these experiences I am so taken by the power and wisdom of the families and self-advocates that I meet.
But at the heart of the potency of this initiative, is the transition that unfolds for the Partners who attend. Most family members and self-advocates sign up for this free program because they want things better for their son/daughter in the community - in itself a laudable goal. But over time (the PIP program is usually over 6 to 9 weekends each month), most of these advocates broaden their perspective, and become an advocate for all devalued people. This shift from micro (an individual perspective), to macro (a community perspective) is so satisfying to see.
Because in the end, a full and inclusive community is about us all - and this is the end lesson of Partners in Policy-making. So if you are (or know) a family who is experiencing disability, check to see if there is a PIP program in your state. If not, inquire with your Developmental Disability Council to see if they can develop a program. It is a disability initiative that works.