Cuts are being applied to the domiciliary care allowance which assists children who need extra care.
The issue is set to take centre stage with groups such as Irish Autism Action, Inclusion Ireland, and the Carers Association coming together to campaign.
Many families in receipt of the payment have been told their cases are being reviewed.
A spokesperson for Inclusion Ireland said: “How can a disability change? People get a letter asking them ‘have your child’s circumstances changed?’
“If, for example, your child has Down’s syndrome or has an intellectual disability then that isn’t going to change. It seems like the department doesn’t know what it’s doing on this issue.
“The waiting time for appeals is far too long and taking it away from people who have been getting it is questionable.”
Campaigners say children with an intellectual disability or autism are finding it more difficult to get the payment.
Speaking to the Irish Examiner, Trish from Navan said she was at the end of her tether. Both of her sons, aged six and three, have been diagnosed as being on the autistic spectrum. Her life totally revolves around looking after them.
Last year, she was told the DCA payment she gets for her six-year-old was being reviewed. Around the same time, following her three-year-old’s diagnosis, she found out he had been turned down. She spent three weeks getting paper work together for an appeal, including doctors’ letters, assessments, and reports, but is still waiting a decision.
She feels utterly let down and says her family is just about scraping by on her husband’s wages.
“You are trying to get all this paperwork together while, at the same time, coming to terms with the grief of a diagnosis.
“We should not have to be doing all this ‘proving’ that our son needed extra care and attention. He had just been diagnosed with a lifelong condition.
“I felt that once he had the diagnosis, there should have been a system in place to help parents through the process. It added a lot of unnecessary stress at a very difficult time in our lives.
“I feel like we have to beg for every miserable crumb of help, even though we are the only group who work for our social protection payments.
“I am on anti-depressants and anxiety medication. I have to take medication for nerve pain in my teeth. I grind my teeth in my sleep due to stress. I also take sleeping pills. I eat too much and drink too much. I had a miscarriage last year, again, I believe, caused by stress.
“I feel isolated, depressed and completely out of my depth most of the time. I spend every living minute trying to think of ways to make life better for my kids. I am no longer a person in my own right,” she said.