Make carer's payments easier to access

6:49 am PST, Nov 30, Name not displayed, Texas

5:49 pm PST, Nov 29, Kerstin Forbes, New York

3:10 am PST, Nov 12, Josh Dickson, Australia
hi, I too was born with this syndrome but thankfully not as bad as little Jacob. I have been in and out of the royal childrens hospital, Melbourne. They have done approx. 12-14 operations to help me see out of my left eye and ear and I am very grateful for my pedants being there every operation.

5:29 am PDT, Oct 27, Name not displayed, United Kingdom
Financial assistance is necessary to give the child as full life as possible and to help the parents with equipment & care.

3:17 am PDT, Oct 25, Name not displayed, Australia
The absurdity of Centrelink "rules". My husband was permanently disabled in a workplace accident, i have never received any form of monetary or practical support from workcover. For 5 years I asked Centrelink for nothing. Then my father-in-law who had been living in a granny flat on our property, had a stroke and other medical problems developed requiring a lot more attention and support. I asked Centrelink for a Carers allowance, i was refused due to the fact that my main source of income was my husbands workcover allowance, i appealed and took this unfair rule to federal parliament, was told that short of me organising a class action, Section 83a of the Social Security act, that says in brief, if the main source of income for a family is from compensation no one in that family can receive a Carer payment regardless of the circumstances. About a year later my 8yr old son was hit by a car and now has a permanent brain injury. After years of not being able to work because of the needs of my husband and father-in-law, i was now also dealing with a disabled child. The financial burden was becoming unsustainable (won't even bother mentioning the physical and emotional burden). Went back to Centrelink, declined again. Went back again and on the point of total breakdown, i asked how many disabled people i would have to look after before i would get some help. I finally found someone with a heart who processed a full Carers payment on the spot, i have no idea how she put it through and i am not about to ask. BUT how many other spouses are there who are looking after someone who's had a work place injury, with absolutely no support? (P.S. Our "income" from compensation, is fixed at 92% of pre-injury wage, from 15 years ago CPI , now barely more than unemployment benifit.)

9:09 pm PDT, Oct 15, Name not displayed, Australia
I have 2 children with autism/global delay. While I recieve the carers allowance I do not recieve carer payment as I do not meet 3 of the set criteria but rather 2 of the criteria twice over (ridiculous wouldn't you say?). The government does not take into account the severe physical, emotional and financial impact of caring for someone with a psychiatric illness.

5:56 pm PDT, Oct 4, Name not displayed, Australia
Carers Payment is designed to be refused. I have had two Centrelink Officers tell me they have only approved 1 in 5 years. I have a child with Autism and applied twice and appealed and been refused. Neither parent can work as the childs behaviour is so disruptive to a normally functioning house. Yet if I didnt even live with my parent who has Cancer I'd get it at a drop of a hat. Adults without neurolical problems are more compliant and easier to care for yet a child with Autism is impossible to even give medication to or to force to go to bed let alone attending to them all night. They wont eat - currently my son refuses to eat breakfast and has about 3 foods he will eat - no meat, no vegetables, no fruit. At 4 years he has only just gained a therapy place but is too rigid by now and too old for it to be as effective as it could. There is a great inequity in caring for adults as there is for children - average children and children with a recognised disability are totally differrent propositions and hundreds of thousands of people hidden in pathetic Parenting Payments is just not OK

4:40 am PDT, Sep 11, Sean Martin, Colorado

9:06 pm PDT, Aug 26, Name not displayed, Australia
Parents who need to stay home to give the best care possible to children with issues should receive support to do so. Schools and day-care centres don't often provide the level of care needed.

12:02 pm PDT, Aug 24, Name not displayed, California

1:50 am PDT, Aug 24, Name not displayed, Texas

10:45 am PDT, Aug 20, RODNEY MILLER JR., Pennsylvania
MY SON WAS BORN ON AUG 12,2007,HE WAS DIAGNOSED WITH GOLDENHAR SYNDROME,SO WE HAVE JUST BEGUN. GOOD LUCK TO ALL...

6:04 pm PDT, Aug 17, Chuck Dowe, Massachusetts

9:13 pm PDT, Aug 14, Marlyssa Carlton, California

7:25 am PDT, Aug 14, Name not displayed, Australia

7:39 pm PDT, Aug 13, D B, Australia
Why dont Centrelink start chasing up the ones who rorting the systems? I know one who did for 6 yrs and others. Centrelink are the worst suckers for believing these people. The honest ones are the ones who get knock back because of their honestly.

10:54 pm PDT, Aug 10, Name not displayed, Australia
I have two children under 10yrs of age on the Autistic Spectrum and I can tell you it is draining emotionally and mentally to deal with them constantly, with no respite except for school, which no pittance of nearly $200/ft can make up for. It also does not make up for the things our youngest child, who does not have an ASD, misses out on because of his siblings' needs, fears and phobias. I'd love to see all of us go to Canberra on one set day, drop all of our special needs children off in the lobby of Parliament House, and go out for the day... what does it take for the politicians to understand that everyone's life is not as rosy as their own?? Remember too that CARERS are VOTERS too!!!

10:14 pm PDT, Aug 9, AMY CRISPE, Australia
my son takes medication on a daily basis to sustain his quality of life, also has fortnightly to monthly blood tests they say no carers for him till he is 16 why not now? what a joke he used to get it when he was younger but i think they mistake the care you give to a younger child for illness. He has been told he will never have to work and can claim disibilty at 16 i wont tell him that but what does he have to have to qulaify for payment now? we have tried several times and been told he is not sick enough basically yet with out his medication his heart will stop!!! gov should get over them selves

8:14 pm PDT, Aug 9, Name not displayed, Australia
Although parents of children with Goldehnar Syndrome are ineligible for Carer Payment they are apparently eligible for Carer Allowance. There is a box a Paediatrician may tick for an unspecified genetic syndrome.

7:44 pm PDT, Aug 6, Name not displayed, Australia
These special people who take care of others should be REWARDED not penalised

2:52 am PDT, Aug 4, Name not displayed, Australia
Help the people who really need help - get dole bludgers out to work all of them.

7:20 pm PDT, Aug 3, Name not displayed, United Kingdom

6:05 am PDT, Aug 3, Cindy Stockton, Australia
My son was born missing his hand and our doctor recommended that we look into a health care card for him as we where visiting specialists to discover what had happened and he needed some surgery also. We where granted a card but after a year we where asked to get the doctor to fill in forms again to prove that his "problem" had not gone away. Yeah they can make a hand grow...

3:37 am PDT, Aug 2, Name not displayed, Australia

10:43 pm PDT, Aug 1, Laurie Edberg, Canada
please read my story and view my petitions at www.tinyurl.com/66vo2

5:12 pm PDT, Aug 1, Name not displayed, Australia

11:21 pm PDT, Jul 29, Wendy Harris, Australia
Just live in my shoes. You wont make it for half a day let alone a lifetime.

9:28 pm PDT, Jul 29, Sarah Millar, Australia

11:37 pm PDT, Jul 28, Judith Kuhnel, Australia
my son also has golden har syndrome, we do not fit the critea to receive any extra payments other then a health care card, which we have to re-apply for yearly, like his condition is going to miraculously go away, it is very frustrating.

8:11 pm PDT, Jul 27, Name not displayed, Australia
First of I offer my apologies to any who may find this offensive. All I can say is what a joke. These so called politions of ours can find money(Kick Backs/Rorting The System)) for their selfish needs and their back pockets and yet they cant help the carers who desperately need the help. Why? I will tell you why "Basically they dont care, but when it concerns them or its an election year they scrap the barrel and give our carers a pitance while they give them selfs pay rise of over $5k per year. Why dont they bring back the old law you steal you lose a hand, but then again there would be alot of one handed politions here.

6:29 pm PDT, Jul 27, Kim Andrew, Australia

5:00 am PDT, Jul 27, Heather McLay, Australia

3:05 am PDT, Jul 27, Kerstin Lahr, Germany

2:09 am PDT, Jul 27, Mary Duckworth, Australia
I acknowledge Centrelink's need to ensure that the Carers Payment is not granted to trivial or even false claims, so strict criteria are set. However, in the case of such rare conditions as Goldenhars Syndrome, it is essential that requests for Carers Payments made by those physicians who have specialist knowledge of the many symptoms and needs for treatment and care, be accepted fully by Centrelink. Many patients may not fall within the better known labels such as Down's Syndrome, and many of the symptoms may not fall neatly into the list of symptoms set down (albeit by doctors) in Centrelink documentation. Nevertheless the many varied symptoms require much specialist and hospital care and huge amounts of intense parental care. The amount of care inhibits the parent from being able to work full time and the costs of hospital visits even using Medicare are huge. For example our granddaughter currently has fifteen different specialists who she visits regularly, and she also has frequent hospitalisations. Her treatment will continue for many years. Her needs are great and so her parents require financial help for her. Her specialist paedriatician acknowledges this, so Centrlink should do so also. Centrelink should accept specialist requests for Carers Payments and Pensions.

1:55 am PDT, Jul 27, Name not displayed, Australia

5:33 pm PDT, Jul 26, Name not displayed, Australia

4:35 pm PDT, Jul 26, Natalie Hood, Australia
I belong to an online support grou CPecialparents, many of whom are willing to become involved in lobbying about this. Thankyou.

4:00 am PDT, Jul 26, Janine Coveney, Australia
The current criteria is absolutely ridiculous and must be changed immediately!

1:45 am PDT, Jul 26, Name not displayed, Australia

12:40 am PDT, Jul 26, Name not displayed, Australia

11:17 pm PDT, Jul 25, Jan Sokolovits, South Dakota

8:23 pm PDT, Jul 25, Tracy Waring, Australia
Help those who help others!!

3:17 am PDT, Jul 25, Name not displayed, Australia
Disabled war veterans partners should get automatic access to this payment as they give up so much to tend the needs of these severely disabled men and women.

10:59 pm PDT, Jul 24, Kevin Brennan, Australia
i have had two disabilities all my life i would like to see the australian Government live off disabilities payments they pay! at 22 i get no help from the australian government as i am over the age of 18. i am trying to have a life go out and work and cos i get $500 a week you get no help!!!! after $150 a week on just meds it makes living hard, when you turn 18 your disabilities DONT JUST GO AWAY it gets harder

9:23 pm PDT, Jul 24, Name not displayed, Australia
While the Australian Government is being miserly about paying Australian carers, it should stop and think how much it will cost if we all down tools and decide to relinquish care of our family members.

11:38 pm PDT, Jul 23, Faye Bergin, Australia
COme and live a day in our lives, with our family, we have a fifiteen year old son with disabilities. He needs to be fed,showered, toileted,supervised at all times just as a baby is. We love him dearly, i have been unable to work due to him being sick often over the years,no employer will put up with missed days off work. As far as occassional respite goes it is a struggle to get him in, ask the government WHY?? are permanent clients staying at these respite houses, which is stopping us from getting occassional respite. Its because there is NOT enough places for these child to live in permanent care. Their parents are beyond looking after them as they are getting older.(the children and parents.)

10:58 pm PDT, Jul 23, Michelle Holt, Australia

5:35 pm PDT, Jul 23, Ailsa Everson, Australia
I get the carers payment because my husband has a lot of health poblems but those with greater problems should also receive it The govt stinks as far as disabled are concerned

11:59 pm PDT, Jul 22, Christopher Wood, Australia
My neice has Goldenhar's and with the amount of operations she needs to have and the number of specialists she requires she definetly should qualify. But you wont allow her to.

4:46 pm PDT, Jul 22, Christine Berrier, Australia
I want to know how & where is my long service and superannuation going to come from when that time comes? People who have had the same job for 10-12 years are rewarded, where is my reward?

11:11 pm PDT, Jul 21, Jodie Silverback, Australia
The little reimbursement that they give us now is a discrace and belittling for the amount of time and change of lifestyle they want to reimburse us for our hard work let alone the paper work to see whether your worthy of the payment.