OK…So this is my time to get out some aggravation. I will try to be reasonable and censored, but knowing me, that will fade quickly.
Two experiences this week have made me wonder who watches out for our children with special needs. It’s completely up to the parents/caregivers to fight the bureaucracy that creeps around in our society:
DIVISION of DEVELOPMENTAL DISABILITIES
Sounds like a nice name wrapped in a pretty bow that will help all those affected with a developmental disorder? Wrong. I have to preface this rant by saying we have just completed the application for Josephine to register for the DDD and this may all be for nothing, but it’s what I am feeling at the moment and need to get it out.
A rep from ARC of Essex County helped me complete Josephine’s application and I am super grateful for that. She is a great woman and is very knowledgeable with how to cut through the red tape. Before we even got started, I showed all the cases about Tetrasomy 8p and was certain this would solidify the acceptance. Quite the contrary! According to the ARC rep, the lower the IQ, the greater the chance of acceptance. Most of the cases show an IQ range of 60-78, too high to help Josephine’s case, even though her IQ has not been tested. The ARC rep had to remove 3/4 of the articles and only focus on the most severe. The DDD doesn’t like to see children with an IQ over 70. And since Josephine is only 1 of 20, it could be likely she would be denied because she is not delayed enough. And there is no proof that the disorder is a life long situation. WHAT????? Her chromosomes are not going to change! Her therapy will help her catch up, but she will always need some assistance with daily activities. ARE THEY KIDDING ME?
Having said this, if she is accepted, Josephine will have a great deal of benefits coming her way, including respite care and after school programs, as well as summer camp opportunities, all free of charge.
So, all we have to do now is wait 3 months – 1.5 years to find out the answer. Stay tuned!
OXFORD HEALTH INSURANCE
After much discussion with Sheldon and our PT, Lana, it was decided Josephine needs a assisted mobility device in lieu of a mainstream stroller, given her hypotonia and poor muscle strength.
We met with the rep from AllCare Medical and he measured Josephine to fit her for an adaptive stroller that will grow with her and give her the support she needs whenever we are in a public place. It can also be used as her high chair in restaurants, as the mainstream high chairs are not safe for her and do not give the support she needs. Lana wrote a wonderful letter of medical necessity, explaining Josephine’s needs, and it was signed by our pediatrician as well. We also included her genetic test results and any other information supporting the need. It seemed like a sure thing.
Yes, it was a sure thing. A sure thing we would be denied! Why, you ask? Because according to the all-knowing “powers” at Oxford, Josephine is just fine using the typical stroller and high chair and does not need the added support. REALLY!!!!???!!! I’m sorry…have these “powers” met our daughter? Have these “powers” seen her in a typical stroller, to see how uncomfortable she is and how unsupported she is? Have these “powers” seen Josephine hit her head numerous times on the back of the typical high chair because she throws her head back without warning? REALLY?
Well, I assure you that Oxford has made the wrong Mommy angry. We are already in the midst of an appeal and will inundate Oxford with more information than they can handle. This is completely unacceptable, to say the least. Denying a child the right to enjoy an outing with her family, all to save a buck…Thanks Oxford. Glad to see my monthly premium is being used in the best way possible!
Ready for Round 2!