It’s time: Tell every MP to Make NDIS Real

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• 
  John Haynes (grandfather) 23 February, 2012 at 6:04 pm

  My grandson, who is totally dependent 24/7, is for us like so many others will require care long after grandma and grandpa have met their maker. His parents will require the little assistance we provide for the rest of their lives. They cannot be really happy until they know that their fellow Australians and their Government will care for my grandson to give his minimum needs and allow him to maintain his dignity

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  JANINE PARKS 27 February, 2012 at 1:15 pm

  Hi my son Shane had a stroke at 13 months of age. We have been up and down backward and forward listening always to the powers that be, WHY,,,,THEY DID MORE HARM THAN GOOD. Now after 33 years of that help, I have my son living fulltime at home because we do a much better job and understand his needs where the professional institutions and carers do NOT. My sons frustration levels have been out of control for 2 decades while being groomed by govt. policies on how our children should be cared for. Of course as a parent we know nothing according to the experts. WELL,,,,,,,, 6 months at home constantly has seen a big change in Shane’s extra challengeing behaivour. I do not get the same physical abuse from him and Shane is a happy man with hope for a future. His disabities are many and no verbal speech and limited signing makes life extremely frustrating for him in the best of situations. Due to political negligence in the system my son has missed out on so much as he has grown up. Now he is living at home in the country area of the Hunter I am Hoping to be able to access services to cover all his needs in and outside of the home. For years we have been told NO to all services asked for because of political negligence around Shane’s place of residence. Unknown to me his placement of permanent respite was changed to permanent residency and his finances transferred from an arrangement made with the residential to THE TRUST AND GUARDIANSHIP TRIBUNAL OF NSW. I WAS VERY PISSED OFF and heartbroken on acknowledgement of this matter. All clients outside carers were informed of these political changes, but me, a clients mother who was taking her son home 10 days out of 14 was not even asked. WELL some years later in june 2011 I was granted financial management and that was when I became aware that my sons status at the residential.This is when I took my son out of the residential and brought him back home.The NDIS I hope is going to put an end to all the abusive and unsatisfactory lives our children and families have had to live with to date. I and my family are disgusted that we were, I was, my son lived with, the lack of humanity within the system. Going around in circles, being totally frustrated and exhausted from just trying to survive in the world has to stop, for all of us and especially for the one’s who can’t speak up. Go the NDIS, do us proud and stand up for us giving life to all and not just the one’s with lots of money, cause when your child or family member is disabled in any way shape or form money seems to be the thing that is needed and there just isn’t enough to access what is needed to support the person in need or the person or people that are caring for them. Last but not at all least is the funding that is being used by certain organisations under ADHC for caring of aged and disabled people is being abused and an overhaul on services conducting care provision should be immediately addressed as there is an overload of inter departmental rules and by laws that don’t allow clients what they are really entitled to,,, and hearing this from cares that work for the service providers is very distressing to hear and extremely difficult for the carers trying to provide the necessary care needed. I have recently become involved with LIFESTYLE CHOICES AND SOLUTIONS and am exremely happy so far with what I have been able to set up for Shane, hopefully this will be more widely accessed by those who are in need, and also made known to more people so they can access it. Shane and myself should have been made aware of all options available to us instead of being treated like mushrooms, and to all of you out there feeling indeed helpless, don’t give up, we will get there, we just need to keep protesting for what we need for our loved one’s and don’t settle for less. To the NDIS I beg of you to be real for us so that we can provide a real life for our loved one’s whom we care for. JANINE PARKS

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