The letter

I am making this as public as I can.  Our family, in specific Eva, or your family, or any family that has a special needs child or a disabled child depends on this change. 

Please, take into consideration how many other families in specifically Indiana you could support.  Our government is setting up our children to fail and this is just unacceptable.  Please make your voice be heard and you could change our future.

If you have been denied services due your family income in your state, speak up!  Find your representative in your district.  Write those letters.  Have your family, friends, or even stranges write letters.  Changes can happen for the better.  I believe that support for our children's future is in the peoples' hands. 

This is the letter that was sent.  Please feel free to copy and change anything necessary to mail. There is also email available.  It is on the link provided. 
Thank you in advance for your support. 

http://www.in.gov/legislative/senate_republicans/5315.htm

Senator Pete Miller, District 24
200 West Washington Street
Indianapolis, Indiana 46204

Senator Miller,

I am writing you on behalf of my family and especially my youngest daughter, Eva.   The only way to explain this letter of intent is to go back to June, 2010. 

Eva was turning one and our parental concerns of her developmental, physical, and social delays were very strong.  We did get approved for her being into the First Steps Program which is geared towards children with delays and is funded state therapy sessions.   Through many illnesses, hospitalizations, and a diagnosis of a rare chromosome disorder, we continued to implement as many interventions for her as time and our finances could possibly maintain.  We decided to look into a supplemental insurance for her that would benefit children with special needs.  We found a program called Children’s Special Health Care Services (CSHCS).

After a six month application process finally resulting to an approval, she was receiving secondary health insurance through CSHCS.  This was a blessing.  Our extra income was no longer being spent on the burden of health care expenses for our child with a disability.

As a family who receive CSHCS, we are required to complete the annual reapplication.  I did just this in November.  To my surprise, we were denied services do to financial ineligibility.  Senator, my concern is this.  We are a family household of six.  We provide everything that we can for our children, teach them the value of education, respect for ourselves and to others, and most of all, treat others how you would expect to be treated.    Now, when my children ask why Eva cannot receive any additional services after she turns three in June, they will then wonder why she possibly still not talking or making those milestone physical improvements that private therapists can assist her with. 

I feel that because we are hardworking citizens and our income is just above the maximum allowed for CSHCS (which is 250% above poverty level), Eva, my special needs daughter , will not be able to have the interventions that she so rightfully deserves.  Since she was born, we knew that she would not get the same experiences as our other children would have.  We know that her life expectations will be less than the others.  But now, we found out that the Indiana State Department of Health is routing her on to fail!  This is just inacceptable.

Senator, there is no reason why Children’s Special Health Care Services has an income barrier.  All disabled or special needs children have that right to get the assistance they deserve from medically trained professionals on an as need basis.  States such as New York and Connecticut have such programs that have as needed services for all children, no income restrictions, just simply much needed interventions.   

Please Senator, I am asking for your help.  I am not just asking for my family but for the many other families that have also been denied due to financial ineligibility. This law must be changed.  The children are being victimized because of their parents 1040.  Our children’s future is our families’ future and on this I will not stand down.  Our children are victims, not only to their impairments, but now to our government.   Please help the many families’ in Indiana by getting these policies changed.  Our future depends on it.

Laura Ralph

Standing up for Our Rights...

As a member of the society for families of a child with a disability, all of us have to deal with our childrens disabililities, physically, mentally, phsycologically, ect... for the rest of our lives.  Now our states are telling us that they will continue to make us suffer by not providing them with the services that they so rightfully deserve!  So lets punish childrens' development stages do to the fact that the parents are income capped?    And all because we are working hard to provided for her what she needs?  Why punish them? They are only pushing them further back!  And the real kicker, the money is there! I am just preaching to the choir that never shows. I swear, Eva's voice is small and limited but I feel like a lion. I will continue to roar until something gets change, whether she can benefit from it or not.
I know that I may not get anywhere with this issue knowing and being advised that this is way over my league but I would think that all state services should be equal.  Some states provide services to children based fully on their individual needs.  Huh, so the theory that every child gets an IEP (individual education plan) starting at birth?  Not every state has this policy.  Or, you can wait until they get to school, at age 5.  Everyone knows that all major development milestones happens between 15 months and 40 months.  So you want me, or my child to wait until she is five?  Luckily in Indiana we only have to wait until she turns three.  In our case, 38 months because she has a summer birthday. 
So, If you want to help your child, your relative, your friend, your acquaintence, please let me know.  Our children need all the help the rightfully deserve!

CSHCS Update

So yesterday, during our beautiful 64 degree weather, I went to retrieve the mail.  I was pretty excited to see that Eva's secondary insurance through the state had finally sent our new card for the year.  I tossed it in the garage and continued to be busy outside.  After four, when the games started, i went inside to go through the mail and opened my "new card".  Can you even guess the most horrific saying unimaginable coming from my mouth when the letter stated that Eva has been denied services after I went through the retched appeal process and she was receiving services last year! I swear, I will continue to fight.  They will not shut us down again.  I will keep fighting until I get that beeeeeeep........ ing approval letter and "new card" again.  And here is a very idiotic way of medical terms being used.  So what if what is is diagnosed with the name of  C17q21.31 micro deletion syndrome.  They consider a "syndrome" a mental disorder and they don't cover MENTAL disorders!  Then submitting the new name of Koolen Syndrome, it just got worse.  I apologize, I am just a little frustrated.
So, if any of you are medical professionals and could explain to me or actually would like to put in writing why genetic abnormalities are named syndromes (ie Downs Syndrome which is 100% covered by the state) I would be happy to submit it with my appeal within the next two weeks. 

Thank you in advance for one; reading about my aggravations and two; thinking of someone that could possibly help.  :)

Our needed Break is Almost over...

Well, we have survived another Christmas season again.  This year, there was no need for doctors, hospitalizations, appointments, or test results.  It has been for the most part a pretty healthy holiday season.  We even continued our therapy sessions dispite some therapist that requested a week off. 

Santa left this under Eva's stocking

After over 50 times down the slide, the smile
slowly was disappearing but she never stopped!



Sisters playing dress-up with each other.  She is a trooper!

In my opinion, this was one of her favorite toys. 
I can't blame her!

 

Ulimately, a portable Nemo was a hit.

As a recap, Santa came and went, handing each of the girls their requested gift.  The family came and ate.  We shared our gifts and then we ate again.  Our New Years was a good time as always and Eva got her kisses at nine with a cup full of bubbly in her sippy instead of midnight like her sisters.  Speaking of sisters, we came to the conclusion that Eva has such a fighting chance.  They not only baby her every need (which is quickly reprimanded) they do what all older siblings do; poke her while she is not looking, tickle her, play dress up with her (which she does not like), does her hair (dislikes even more than dress-up), and much more.  We are fortunate enough to have so many people in her life to help her along the way.