If there is one thing and one thing only that I hope all people take away from this post, especially families living with disabilities, please get documentation and copies of documents that are being disseminated, published, and shared about your child. This includes case managers, service facilitators, insurance documents, doctor's notes, etc.
Unfortunately, some people will write incorrect information about your case. While we are completely self absorbed in our own lives, we have to remember that humans make mistakes and document life incorrectly at times. I have no doubt that government case managers are over worked and underpaid, but this does not excuse the mistake. As a parent you MUST ask for the documents that are being written about your family members. It's your job to be their advocate and protect them.
Case managers have dozens of cases and I have no doubt that dealing with so many people and their issues can get quite confusing.
Most recently, a case worker, who is supposed to be an advocate for my daughter, wrote a grossly inaccurate account of her behavior. I was shocked and left unbelieving what I read. When I asked the case worker about the inaccurate sentences in my daughter's file, she quickly blamed it on the last case worker. Now, please know this, this case manager came to my home simply one time for at most one hour. The case worker who she blamed the mistake on, had also only come to our home one time for an hour.
I had repeatedly asked for the copies of documents from the first case manager and then from the second. I was forced to be persistent and firmly assertive. I do recognize they have challenging jobs, but I have a challenging life to protect my daughters rights and her story from people who see her as a case number not a person.
So, I end this post begging you to get copies of all documents (and read them) and be an advocate. Sometimes we assume too much that people are doing their jobs; however, everyone needs to be in charge and advocate for themselves and their loved ones.
Our life, our experience, our history, about my daughter with a rare chromosome disorder. She is missing a small portion of her 8th chromosome, which is called a deletion. She also has a small part of XP added to that. Her karotype or diagnosis is deletion 8p23.3 with extra xp22.2 to the terminal deletion (a new chromosome test summer 2011 changed her karotype to deletion 8p23.2 with extra xp 22.12, essentially meaning more missing chromosome 8 and more added xp). #herrarelife
Showing posts with label community service board. Show all posts
Showing posts with label community service board. Show all posts
Wednesday, December 4, 2013
Subscribe to:
Posts (Atom)
Time is a Thief
I don't remember the first time I heard the sentiment, "time is a thief." Recently it is heavy on my mind. I haven't post...
-
and the flu panic begins... http://www.cloroxclassrooms.com/downloads/teacher_brochure.pdf
-
Sadie has been having spasm type clinch arm and mouth type movements that last about 2 seconds randomly starting in June. For the past mont...
-
Today I was feeling the need to read other stories about other children with chromosome disorders. I googled blogspot to see if I could find...