Being happy doesnt mean that everything is perfect.

It means that you have decided to look beyond the imperfections...

Sunday, July 3, 2011

Should we have to make our daughters disability and our situation sound worse than it is?

Over this weekend I had to complete a ECIS (flexible support package) application form for Ellie.
It is a form that we need to complete to apply for funding to cover the costs of the following equipement that Ellie requires:
  • Lateral body splint (Second Skin) $2,070
  • Communication book $280
  • Alteration to Ellies pram, or possibly buying a new non-commercial pram that will suit her needs better $?????
To apply for funding for these items through the ECIS (flexible support package) you have to fill out an application form.

Let me tell you, filling out such forms when you have a child with a disability is an absolute HEADACHE.

The advice that we were given, to ensure we receive the maximum allocated amount was to 'give the worst case scenario', basically make your situation and your childs diability sound terrible.

Is the situation of just having child with a disability, not already bad enough?

Is the fact that we were forced into being a 1 wage family, due to me staying home to be Ellies carer and do all that is possible for Ellie, not bad enough?

Is the fact that financially we struggle, due to being on 1 wage, not bad enough?

Is the fact that, having a child with a disablity is tiring, exhausting, and puts pressure on your marriage, not bad enough?

Is the fact that you worry about the future of your child? and how you will have to money to cover all future costly expenses, not bad enough?

I dont get this... Im not saying I have the worst situation, yes there are people worse off then us....

But at the end of the day, having any child with a disability, regardless of what type, is bad enough, its hard.... emotionally, financially, physically and mentally.

Our government should not make us beg or embelish our childs disability, just to get our children entitiled to what they deserve.


  1. Great post Melissa, couldn't agree more!

  2. I agree completely! I too am struggling to get Dylan what he needs and deserves. It can be very very frustrating!

  3. I completely agree 100%. Kaylee's been denied private duty nursing twice by my insurance company because they did not deem her "medically fragile" to warrant care. We are scheduled to have our third appeal hearing this Wednesday, and I have sent copies of letters from her neurologist, gastroenterologist, pulmonologist, pediatrician, and cardiologist who all assert that the medical necessity for THEIR specialty is all together, she has multiple, medical needs. I really cannot begin to understand how they could deny her a third time, but I am prepared for a fight...a fight I do not think I should need to have. Don't even get me started on our Medicaid services here; I went to apply last week, and no one had a clue about what we should do, who to see and what forms to fill out because we already have insurance. Life has been so hard for my family since Kaylee was born-- more than I like to sometimes admit. The anger is still there under the surface, and having to jump through these hoops only exacerbates it for me. I hope that you are able to get the services that Ellie is entitled to. You are right...having a child with a disability is hard enough! Much love! xo

  4. well said mel, however sadly it is time to get used to it cos it only gets worse! wait till you have to get funding for school! 'make your child look as bad as you can so they get a low IQ so they can get some kind of aid at school! CRAP CRAP CRAP!

  5. Yep, it's sad, and like what Limor said, it only gets worse, BUT you will get used to it (sadly) and you will know not to feel bad about it because it is (unfortunately) what you have to do for her. I must say, i am surprised to hear that you are filling in the forms, your therapists should be doing that stuff for you. Good luck. XLiv

  6. I know exactly what you mean!! I am in Canada and there is very little funding for any special needs child and most of the parents I know who have received it have had to exaggerate on everything in order to get it! Also its crazy how much funding a child here with autism will get yet my daughter has the same "issues" and there is no funding,so here I am trying to get her diagnosed with it so she can get the help she needs!! We are in the process of doing this and if she doesn't get the diagnosis she is once again back at NO HELP!