I recently wrote to Senator Barbara Boxer and
Senator Dianne Feinstein in regards to the CDC's plan to consolidate all forms of disabilities into one big pool. The concern is that the larger spoken about and publicized disorders would get larger amounts of money. Here is what I wrote:
As a concerned constituent and someone who is affected by Spina Bifida – the nation’s most common, permanently disabling birth defect – I am writing to respectfully request that you sign the Dear Colleague letter currently being circulated by Senators Wicker and Lautenberg, expressing concern over the Center for Disease Control and Prevention’s (CDC) proposed plans to reorganize the various individual Human Development and Disability programs into a single program.
Spina Bifida affects approximately 166,000 individuals and 3,000 pregnancies every year. People with Spina Bifida face a host of difficulties, including, but not limited to--physical, developmental, educational, and vocational challenges. The National Spina Bifida Program and the National Spina Bifida Patient Registry at the CDC work together to maximize quality of life for people with Spina Bifida, reduce and prevent secondary effects of Spina Bifida, and improve the quality of care for people with Spina Bifida.
Congress created the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the CDC in order to put issues important to the disability community on our national public health agenda. The disability community is made up of very different and unique populations with different and unique needs. That is why I am very concerned about CDC's proposed consolidation plan.
To add your name to this important letter, please contact Sarah Lloyd Allred in Mr. Wicker’s office (224-6253) or Kyle Brown in Mr. Lautenberg’s office (224-3224). I very much appreciate your support for Spina Bifida and your attention to my request. I look forward to hearing back from you regarding support of maintaining the NCBDDD at the CDC. Thank you in advance for signing the Wicker-Lautenberg Dear Colleague letter.
When I approached this to you earlier in the year, you talked about funds needing to be consolidated, but we have concerns that some of the more well known birth defects and developmental disabilities will get more funding...and we really need our own funding. My son is five years old with the most severe form of Spina Bifida; it affects not only his mobility (he is a full time wheelchair kiddo), but his ability to empty his bowels and bladder, and a severe reflux problem. (He throws up every night). Without this specialized funding, his issues may not be addressed as readily in various studies. I want to be able to provide my son with the most up and coming medical advancements...please don't take that away from us.
Dear Mrs. Jensen:
Thank you for taking the time to write and share your views with me. Your comments will help me continue to represent you and other Californians to the best of my ability. Be assured that I will keep your views in mind as the Senate considers legislation on this or similar issues.
If you would like additional information about my work in the U.S. Senate, I invite you to visit my website, http://boxer.senate.gov. From this site, you can send a message to me about current events or pending legislation, access my statements and press releases, request copies of legislation and government reports, and receive detailed information about the many services that I am privileged to provide for my constituents. You may also wish to visit http://thomas.loc.gov to track current and past federal legislation.
Again, thank you for sharing your thoughts with me. I appreciate hearing from you.
United States Senator
So basically....this is what I hear from her letter...I didn't read what you wrote...I'm not mentioning your son....and btw have you seen the many OTHER legislative policies I have been a part of?
I can't find the letter from Senator Feinstein, but she mentioned my son, wished him the very best, and promised to think about my words as she made her decision.
I'm not a fan of politics, and I'm not trying to sway anyone's political allegiance, but I want to challenge you all to write to your senators, find a topic that is important to you and your family, write a letter, add a personal story to the letter and send it to both senators. See how the responses vary, it really has opened my eyes.