Key Family Concerns - Lessons from Partners in Policymaking

There is a wonderful program available in most states in the United States designed for families who have children with disabilities (and self advocates and other advocate/stakeholders) known as "Partners in Policymaking (PIP)"  This effort initiated in Minnesota many years ago and has been one of the most successful disability advocacy programs.  Over the years it has been adapted and adjusted, but the basic design is to have a class of partners attend a weekend curriculum over a 6, 7 or 8 month period, with each weekend focused on a different topic important to families.  The goal is to empower a cohort of disability rights advocates each year in the states that conduct the PIP program.

For the past 20 years or so, I have been active with the PIP faculty and have conducted sessions on community building, social capital and understanding macro change in many different states.  I have really enjoyed these session and the passion that families and self-advocates bring to the program.  In fact, as i write this blog, I have just finished a session with the Florida PIP group.

As i reflect on the session I had today, and the others i have participated in over these many years I am taken by a powerful common theme that always emerges in these sessions.  When we focus on community and examine what these families really want for their children, the discussion always turns to relationships, friendship, and being active in the community - social capital.  The question that almost always emerges is; "What will happen to my child when I am no longer around?"

Of course, all families want their children to be happy, healthy, and safe, but families who have children with disabilities know deeply the realities of isolation and loneliness that manifests more for their children.  They know that, for the most part, their children are not routinely invited or involved in social and community activities, and often have to rely on human service agencies for this type of socialization.

It is this core issue of relationships and friendships that must be addressed by disability agencies and advocates.  It is clear that specialty programs designed for kids with disabilities is not what these families really want.  They want what any other family does for their children - that they are naturally a part of the community, and have the diverse social capital that reflects our culture.

I have learned so much from my experience with "Partners in Policymaking," but the key element, a sensitivity to the importance of relationships, continues to be an area we all need to focus on.  If you are a family member reading this blog, and your child does not have a disability, encourage them to be open to their peers with disabilities and extend out to them.  Relationships are always a 2-way street.