Advocating

It's been a loooong time since I've written here. I originally used this blog as a place to write about my struggles with pregnancy loss. Then when I found out the baby boy I was carrying had Down syndrome, I assumed the blog would transform into a place to record the struggles that would come with that diagnosis. The fact that I haven't written on this blog for so long is a testament to just how seamlessly Will's addition to our family has been.

This is mostly due to Will's sheer awesomeness. He has had such a healthy first 18 months. His development is slow at times but always steady. He is an easy, happy baby. 

But the easy transition is also due to the supports we have. One such support has been Delaware County's version of the Help Me Grow program. I found out over the weekend that the program as we've known it was at serious risk. This brought my first real need to advocate for Will and stand up for what I know is right for his continued growth and development. 

I had a phone call with the director of the program to express my dissatisfaction with proposed changes. In the end, she conceded that even if they voted to make the proposed changes, I could keep the services as Will's been receiving them. I almost felt satisfied. At least it wouldn't affect my son. But then I thought about the families that would come after us who wouldn't be given that choice. In the end, I decided I should still work to convince the board to vote against these changes. Not just for Will, but for all young children in Delaware County.

Here is that letter:

Dear DCBDD Member,

We are writing to urge you to vote against the Primary Service Model as the method of delivering early intervention in Help Me Grow. When our family moved to Delaware County and then soon found out our, then, unborn son has Down syndrome, we were told time and time again how wonderful Delaware County’s Help Me Grow services were because they allowed parents to choose their providers and have a real voice in the services their children receive.

Once our son Will was born, we quickly requested referral into the program we had heard so many great things about. Will sees three highly qualified professionals who are trained in their area of expertise. We have chosen each of these therapists through referrals from other satisfied parents. We are deeply concerned that it is up for consideration to take away our choice as Will’s parents about who will provide his services.

We are even further upset by the idea that his services will be changed from direct therapy to consultative.  Each type of therapy requires a specific set of skills and training, so why does Delaware County believe they can have one person deliver the services for all three types of therapy? You know the common saying, “A Jack of all trades is a master of none?” We want the very best for our son, and that means he should be seeing each type of specialist, not someone bringing us secondhand information from another specialist.

Finally, as taxpayers who recently voted to continue DCBDD funding, we are greatly concerned that this change is proposed. No matter what jargon is publicized, we believe that this an attempt to cut costs and that it does not have our child’s (or anyone else receiving Help Me Grow services) best interest at heart. Why else would you consider taking something great and making it mediocre?

Vote no on the proposed change to Primary Service Model and maintain excellence in Delaware County!

In the end the board passed the proposed changes with a 4 to 3 vote. I can only hope that Will's services will in fact continue as they've been. And as disheartened as I am about this decision, I know that I did what I could.