Monday, November 17, 2008

A new mission

It has taken me some time to write this...

Imagine being the mom of a child with Rett Syndrome. (I know most of my readers can do more than imagine) Imagine that you are reading over the evaluation report you recieved from the school. All of the sudden you stumble on two words that stab at the depths of your heart. No one used them in the meeting, but they sure didn't have a problem putting in the evaluation and labeling your daughter with "Mental Retardation." You wonder what gives them the right to use such an old, hurtful term...a term that not even an old doctor has used...You go into the next meeting, and ask that those words be removed from any documents in your child's file. You are told that can be done with written notice. You then ask why they even use it anymore. You are informed that the state WAC (Washington Administrative Code) gives them permission...What would you do?


This is my story, and here is what I did. I called my dad, who spent 8 years in the State Legislature, and asked him what could be done. He said if it is in the WAC, it must be in at least one RCW (Revised Code of Washington). So I get on the Internet and start looking. I do a search, putting "the term" in quotes. I find 48 WAC's and 35 RCW's that contain "the term." I'm shocked. I can't even believe that we are still using it! I understand that it is a medical diagnosis, and that is probably not something I can change on my own. What I can do is fight to have the wording in all 48 WAC's and 35 RCW's in Washington changed. I am working with my local legislatures who are speaking with their policy people. We are going to try to get this to vote for the 2009 session. I will of course update my readers as we go through this process.

You, too, can make a difference. Does your state still use "the term?" There will be a vote in the Missouri Legislature to remove "the term" from government us. It will not change eligibility for people who have had old school doctors that have given them such a diagnosis. In Washington, it is the Department of Developmental Disabilities (or DDD) in Missouri, it is the Department of Mental Retardation and Developmental Disabilities. This must change! Our loved ones do not need such a hurtful, derogatory term assigned to them. Wont you help make a difference?

5 comments:

Anonymous said...

Where I live it is the MRDD...http://www.csbmrdd.com/

I sent them an email suggesting they update their name.

Rebecca said...

Thank you so much Tami! I know Ohio is hoping to have a vote this coming year also...Thank you so much for your support!

Kim said...

I saw it on Lily's medical report and almost threw up.

Kristin said...

Thank you for reading my blog and commenting.

I was looking over your blog briefly (the monkeys are awake).

Did you apply for SSI? I make the medical descision for Social Security and could answer any questions you might have.

Got to run, chaos insues

Anonymous said...

Rebecca - Thank you for commenting on my blog. We are still trying to get the blood work covered that would confirm a diagnosis of Rett's. I was so happy to read your blog and the many others I found via your links. I'd love to stay in touch with you as we progress down this path.

Your daughter is beautiful. And she is blessed to have a mommy that is fighting for her.

Anne