Tough economic times, these. I don't envy or wish to be the public servant who has to make the tough decisions.
February 5, 2009
State Senator Bruce E. Tarr
State HouseRoom 313-A
Boston, MA 02133
Dear Senator Tarr:
Just today I was invited to attend a ‘State House Rally’ at the Grand Staircase to share my story with my state legislator and ‘anyone else who will listen’. Unable to attend, I am able to write.
My story, no, our story, began just over twenty years ago with the birth of our second child, a daughter whom we named Emily. Emily was born with Down syndrome. You may be able to imagine the surprise, even shock of a pediatrician, not your own, entering your hospital room to advise you that your baby has a syndrome, a heart condition and is being transferred via ambulance to a Boston hospital while you are stuck, right there in that room, in that bed, for another twenty-four hours. Fortunately for Emily and her family, her heart condition required no surgery and she was home with her family in no time.
Since then, the road we’ve travelled has been uphill, bumpy, and full of twists and turns that we hadn’t planned or dreamed of in our wildest imagination. It has been long, often times arduous and so completely not what we expected. We have all had to learn as we go the ins and outs of living with a special baby, then child, then teen and now young adult. Each age brings new challenges and a new learning curve. For each of us.
We love our Emily no less and no more than we do our oldest child. In our eyes she is a shining star. She has a light about her that beckons us, pulls us in and encourages us to do more, do better, be better. All of this learning, all of these challenges show us just how strong we are as people and help cement our commitment not only to Emily, but to other individuals with disabilities and different needs.
Our family hasn’t been alone in our efforts to educate Emily, to give Emily the tools she needs to live a life that she will enjoy, independent of her family, yet fully supported as she needs. Our extended family, our friends, our school district, her educators, her coaches and the many, many people who work for agencies such as North Shore Arc, Till, Inc. and DMR … have all been there with us through ‘all of it’.
Tough economic times are upon us. I know difficult choices are being made daily, weekly, monthly throughout the legislative body. I admire those of you who serve in public office and support your constituents not only in the good times, but also in these difficult times. I recognize that your office receives requests daily from many with varied special interests – those that they hold dear – to support their cause, their funding, and their needs.
I am no different than those that ask for support for other causes.
I am writing to ask you to support full funding of current programs that provide family support, respite, social, day care and educational opportunities for babies, children, teens and adults with disabilities, special needs and mental retardation. Without continued funding of programs presently in place, the many disabled and special needs citizens of the State of Massachusetts will lose the precious and needed support they receive to live full, and to the best of their abilities, unrestricted lives.
As you work on The Joint Committee on Children, Families and persons with Disabilities please keep in mind the hundreds of families and individuals receiving much needed support and assistance and recognize that the numbers will not diminish, but more than likely, will increase as the economic downturn forces layoffs which in turn will force more families to seek assistance and support. The waiting lists are long now. I cannot imagine how much longer they will get as we struggle through the next few years.
I believe the State of Massachusetts should make a commitment to these citizens, less fortunate than some perhaps, but no less valuable than any other citizen of the commonwealth.