FCSN // Newsletter // 2013 // December 2013 // Celebrate 40 Years with Us!

Celebrate 40 Years with Us!

From the Executive Director – Rich Robison
Celebrate 40 Years with Us!

The Federation for Children with Special Needs is celebrating the start of its 40th year. What started as a conversation between 2 parents who discovered a common need and experienced the reality that they were not alone, has become an incredible source of information and resources that empowers thousands of families every year.

I was inspired by parent leader Mary Summers’ perspective, she wrote:

“Forty years? That seems like a long time. But do you realize that many of the children for whom those early efforts were waged are now middle-aged adults with active lives of their own?!” As I often say to my friends, YOU know you’re a parent when the days drag on and the years fly by. Imagine the speed at which those years fly by when YOU are a storied organization that has had such impact on the lives of so many infants, children, youth, and adults!”

“As we consider the Federation’s history, there is a list of names that we all should know, a few “Giants” that we recognize and appreciate for their selfless and tireless efforts. We mean the “Foremothers” who shaped the landscape of the Federation, for the benefit of generations of families and the nation. Martha Ziegler, the Federation’s Founder and first Executive Director; and her colleagues Phyllis Sneirson, Janet Vohs, helped formed the Parent Training and Information Centers. Betsy Anderson, pioneer advocate in Maternal and Child Health, along with Nora Wells and Barbara Popper were founders of Family Voices. These are the great names among them. These are some of the visionary people who collectively took on the systems of care and education, insisted on fairness for their children with special needs, and gave us all a place to be safe, to be connected and empowered. They used their passion and energy and to help others develop the ability to advocate for their children who really needed their parents to be good at it, for there was no one else.”

Clearly this was my personal experience as well. When my own daughter was in Early Intervention, Dotty and I went to our first Federation workshop at the early childhood center in our town. We learned for the first time that our daughter has rights under the law and our dreams that she could be a valuable part of her community could be a reality. That was an amazing moment for us! We have continued to learn ever since.

Now, 40 years later, the Federation still stands with those whose vision and passion make a difference. Their vision has become our vision with hope for an even better life for our children. No longer is it enough to only have access to the school building, today’s children must have access to a high quality education. No longer is it appropriate to ignore the needs of children with special health needs with a declaration that there is nothing to be done, today’s children must have the same high quality health care of their peers. No longer is it tolerable to stigmatize children with social/emotional needs, today’s children must have parity across their life time. Thankfully, we have come a long way from those early years.

We also know we still have much to do. The achievement gaps in academic performance still persist for students with special needs, and those at risk. Health disparities linger for those from low socio economic status and families whose first language is other than English. Our job is not over.

In her own words the late Barbara Popper, upon reflecting on her work on “Children in Hospitals”, an advocacy effort that did away with restrictive visiting hours in hospitals in the 1970’s, once stated:

“A few years ago, I was asked what kept me doing what I was doing through the decades? My answer was that while my struggles with hospital policies, which needed reform, ended well for my family. The result of those efforts was that other parents were no longer told to leave their child with the staff and just observe. But, there are other parents who still call every day seeking support and information- often distraught as they tell their stories of dealing with medical systems and school systems that simply won’t respond to the needs of their families.”

“Parents call for assistance because their instincts tell them to persist, to be tenacious, and to keep trying to get help with their child’s needs. They have been met with policies, programs and very often attitudes that confound and block them. What these parents need most is affirmation that their instincts are good and that as parents they can trust their instincts as they work with those systems. That hasn’t changed over the decades.”

Someone told me, “Barbara saw right to the heart of things, knew what was important, and worked hard to make the world a better place. She believed in plain speaking, and never spoke more eloquently than when speaking words of love about her family”.

The Federation is 40! We are strong and growing stronger. In so many ways, our job has just begun.

We have inherited a legacy and we remain passionate about our Mission: to educate, inform and empower families.