Why is it that there isnt help for people with Special needs
Why is it that there isnt help for people with Special needs?
I read a question from a friend on Facebook the other day it was "Why is it that society and the medical system don't help special needs people.?"
What a great question.
For many years we have been trying to help Matt and finacially going it alone with very little help from anyone although we have asked and asked there is no special support to help you with none pharmisutical care, no extra funding for food, no extra funding for someone to come in and care for or help out with in fact unles you tell them that you or anyone will not be available to help with Matt they wont even look at you it has to be an emergancy situation. Which for me would not happen as I am always caring for my children and would never leave them unattended.
The programs are limited and with Matts condition they choose not to take him because they are not suited incase he has a seizure in their care.
It makes it very limited on what we can do to help Matt as someone has to be home and with him, although Matt gets some momey he does not get enough to care for himself and the extra specialty food, medication and other things he requires during the month so we are constantly using money we need for other things to help with Matt.
If Matt went into a home he would be care for not as well mind you as many do not believe in the diet as a healing add, he would also not get some of the other medication he is on that is helping him a lot so he would be back at square one but there would be magic money to give the care givers to care for him as this would be their job and would require payment.
I dont understand why this same money can not be given to the familys to help with, yes if any family memebers care for him they would not be intitled to this money family becomes responsible for this person.
That being said you can always sign all rights over to the govenment or even partly over to the government and they will again find the money to support them but just not any family member. Where is this money in the mean time? It is available so why not the care giver no matter who they are?
Lets speack for a moment on some of the programs, there are work related programs that they have available for people with disabilities when Matt was in school I worked as a care giver in one of these I learned so many things like there was so much more maney available and more programs that the companys were actually caring what their clients where doing they had different activity days like bowling, swiming and other fun trips but when the funding cuts came that all changed and then they all just started with so many falling through the cracks, working for very little and in conditions so many of us would not ever think of (all though I did work with them and love being around them). Today as I said there are very little progams and no way to have a break as a parent unles you have someone you can trust to care for them. I am grateful I have daughters who do care for their brothers and will watch him from time to time if they are not busy.
But what about the ones who have no one where do they go? How do they stay home and still aford to care for them?
Where do you find the help you need?
The question was also relating to society and medical system and I have to tell you I have had my share of dealing with both I still dont get much help from either everything I have done is against the medical system Yes I do my own thing (lucky for me I have a dr who trust me and knows I would do anything to help my son) Drs and medical system can only do what they know yes they only know what they are taught medically they do not go out of their comfort zone and learn anything about anywhere else (my dr how ever will research other alternitives and will recomend I try) the first dr I saw for Matts seizures almost killed him with just the thought of upping his dosage and not wanting him on a diet at all why because that is all he knew and prascriptions are where they get their money from.
Society this is a big word but as far as the government is concerned if you are taking care of your child them they dont have to and they like to spend their money (actually our money) on what ever they feel like.
Programs get to choose because there is so few and only need a few clients to make it work for them.
As for people in general many may not even know that someone even has a disability or illness as there are so many that are sightless.
How do we change this?
This is a really good question maybe writing about it like I am doing in my blog here will help, maybe when peoplae are aware that the ones who need it most are being ignored, the ones who can not speak for their selves need it the most.
Maybe just maybe others will share and it will become an issue to look at.
A person with disabilities does not need to be struggling and neither does their family.
Together we can make a differance.
<3 Joan Nielsen
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