Partnering With Policymakers

"The most difficult thing is the decision to act, the rest is merely tenacity. The fears are paper tigers. You can do anything you decide to do. You can act to change and control your life; and the procedure, the process is its own reward."  Amelia Earhart

Last year, I completed a course for Partners in Policymaking( PIP).  It's a leadership program to help advocates of people with special needs to learn to effectively work with our officials in government.  Our goal as PIP graduates is to work with legislatures to impact positive changes in laws that directly impact persons with disabilities.  I always remind myself that our officials are public servants.  Their job is to stand up for their constitutes plain and simple.  I live in New York State.   Two public officials who immediately come to mind that send the message they care about special education are state senator, Greg Ball and Governor Andrew Cuomo. 


A few weeks ago, I attended a round table hosted by Senator Greg Ball.  The topic was transition plans for adults with disabilities.  This area presents particular challenges as we prepare our children to launch from high school into the adult world of further education, jobs and in some cases independent housing.  My son is not quite there yet.  He is only 10 years old.  I do think ahead however and understand planning begins sooner rather than later.  I think it's very important that we try to set the path as early as middle school.  It's important to have long range plans in place.  How can I set my child on the right path if his current needs are haphazardly handled or without forethought?  It's a real concern I have for both of my children for very different reasons.  With my son, he has challenges that can negatively impact his potential and future if goals are not carefully and thoughtfully managed.  By the time a child reaches age 14, they should if at all possible, participate in CSE meetings.  It's important that teens begin to learn to participate in the process by providing input for their own self determination plan.

I walked away from the roundtable not as enthusiastic as hoped.  As it turned out, the roundtable ended up being more of a PR opportunity for Senator Ball with local businesses that hire people with disabilities.  Don't get me wrong, it is great that businesses encourage the hiring of persons with disabilities with a focus of what they offer in the work place.  There were photos taken with approximately a dozen representatives from various business receiving awards from the Senator.  Truly, it was not what I expected.  I expected the roundtable would be an opportunity to brainstorm ideas.  It only touched briefly on the concerns of some participants including myself.  I tried to provide testimony of the real day to day challenges parents often face in advocating for their child.  I tried to stress the concerns of self determination begin early on and there are many unknown or unseen hurdles.  Every step of the way is a building block.  However, the hill can be a very steep climb for parents with children who have special needs.  All the more is the reason to begin planning early, not later or as a child nears graduation or aging out of high school. 


Following the roundtable, I searched online for articles about the meeting with the hope of finding references made about planning strategies for young adults moving into the workforce or higher education.  To my disappointment,  I found only photos of the Senator standing along side business owners and representatives with awards in hand.  Again, it's important to know there are businesses that support the hiring of persons with disabilities.   The photo-opt doesn't address however, the larger and broader challenges that directly impact people with particular needs.


Although somewhat discouraged, I have no plan to give up but will keep trying to partner with our public officials in government.  It is way too important to not keep trying with every opportunity.   If we don't try to impact positive change, we have no right to complain when things are not going our way.  Minimally, we can say, we tried to be part of the solution and not the problem.