WHEN you speak to the parent of a child with autism, or any form of additional needs, the word you hear more than any other, is ‘fight’.
The HSE have admitted that they have not been able keep up with the demand for essential services and parents up and down the country are having to fight for every appointment and every valuable minute with a health professional.
Unfortunately, the fight is going to get tougher in the coming months as the HSE and Department of Health take measures to deal with their worsening financial situation.
The Waterford News & Star can reveal that an essential payment to parents of children with additional needs – the Domiciliary Care Allowance – is being reviewed across the board and critically, waiting lists that are already stretching beyond a year are going to get longer as the HSE seek to merge the waiting list for Waterford into a regional list that will include Carlow, Kilkenny, South Tipperary and Wexford.
This week, the Waterford News & Star spoke to parents of children with autism to get an insight into their “perpetual fight” for services and how the planned cutbacks within the HSE will impact their lives.
Paula Dalton is the mother of two autistic boys – aged 7 and 15 – and says that access to services was so much easier when her 15-year-old was first diagnosed, with waiting lists “nothing like they are today”
“The second time around I couldn’t believe how bad things were,” Paula said. “I had to take two years out from my job, just to concentrate on the fight for the therapies that he needed. In those two years, he didn’t get one therapy. With my little boy getting worse I had to make a decision of whether to go back to work or not. He was screaming, he was banging his head off the walls and the fireplace because he couldn’t speak and was getting really stressed not being able to communicate.”
Paula loved her job and said that quitting was one of the hardest things she ever had to do.
“I didn’t have a choice,” she said. “We couldn’t leave him with someone and expect them to watch him bang his head off the wall not knowing how to deal with it.”
Finally, Paula reached the end of a waiting list for Speech and Occupational Therapy, but all wasn’t as it should be.
“The system is so bad,” she said. “You’d get six Speech Therapy appointments, which just isn’t enough, and then you’d have to wait up to a year for another six. The Occupational Therapy appointments were worse, with many getting cancelled and never scheduled.”
Lavinia King said that her own mental health took a nosedive after her six year old daughter Annika was diagnosed with autism.
“At age two and a half I told the public health nurse that we needed to see a speech therapist as Annika couldn’t speak and was just pointing at everything,” she said. “Six months later we got our first appointment. We were then told that there would be a two to three-year wait to get an Autism Spectrum Disorder Multi-Disciplinary Assessment within the HSE. Without that, we wouldn’t have a diagnosis and we’d have nowhere to go.”
Feeling like she had no other choice, Lavinia and her partner brought their daughter to Dublin for a diagnosis that cost them €1000.
“Once we had that diagnosis there was still another eight month wait before we could get an appointment with a speech therapist,” Lavinia said.
“But there were so many other services that were needed. Annika would jump from the top of the stairs down to the bottom. There was no perception of danger there at all. They’re talking about reviewing the DCA but there are so many other costs that people have to take upon themselves. We had to change all the windows in our house because she has tried to climb out of them. We’re in a Council house and we asked them to help but they didn’t even acknowledge the problem.”
Annika needs to be watched at all times because of the risk to herself, even when she goes to the toilet. However, the services in Ireland right now are so stretched that such care is not possible.
“The Government haven’t caught up with how to care for people with Autism,” Lavinia said. “Annika struggles in large crowds so when she goes for swimming lessons with the school, she has to be left in her on section. Diet wise, she’ll only eat pasta with parmesan cheese so we were on a waiting list to see a dietician, of which we got one appointment and now that she’s in the 6-8 age group, there is no dietitian available.”
Lavinia has two other kids and her situation starkly conveys the unique challenges faced by parents of autistic children. There aren’t enough services out there to help them and ones are there are shackled by appallingly long waiting lists. Autistic children in Waterford are currently waiting up to 44 months to see an occupational therapist and an average of 12 months for an appointment with a child psychologist. This is how it’s been since 2014. During the same period the average waiting time in Carlow/Kilkenny has dropped from 24 to 6 months, while for South Tipperary it has fallen from 30 to 22 months. The waiting time in Wexford, however, has increased from 45 months in 2014 to 67 months in 2018.
In response to a question from Sinn Féin TD David Cullinane, the HSE has confirmed its intention to merge all four waiting lists into one regional waiting list for the South East.
They claim that this will allow them to ensure equality of access across the region but also admit that the changeover will lead to an initial increase in waiting times.
They also say that they are recruiting an additional 15 child psychologists but there is no concrete timeline for this and their intention is to go ahead with the regional waiting list plan before the additional staff required are in position.
Sinn Féin Councillor Conor McGuinness told the Waterford News & Star that this decision is “staggering”.
“Without the staff to do the work it is inevitable that waiting times will increase,” Cllr McGuinness said.
“There is simply not the capacity at present in terms of staff and resources for such a reassignment. We all know about the chronic recruitment and retention problems with the HSE so it could take years to fill those additional 15 posts, if they manage to fill them at all. It’s staggering that the HSE would embark on such a path of consolidating waiting lists without having the necessary personnel put in place beforehand. Based on current waiting times it is clear that children in Waterford in need of child psychologist will be made to with longer while the HSE removes capacity from Waterford and reallocates it elsewhere.”
Cllr McGuinness said that Waterford people are going to suffer more due to the staff issues in other counties.
“The HSE is not in a position to undertake the type of investment in staff that is needed to deliver the type of service that all citizens in the South East deserve,” he said. “The merging of waiting lists cannot go ahead until the necessary personnel are in place.”
Parents fear loss
of ‘vital allowance’
THE Domiciliary Care Allowance is a monthly payment of €309.50 that’s paid to parents of children with additional needs. There are no PRSI conditions attached to it, and it’s not means tested. However, as explained by autism services campaigner Vivienne Burns, it is a very difficult allowance to receive.
“It’s a desperate form to fil out,” she said. “You have to spell out, in the starkest, most upsetting ways imaginable, everything that’s wrong with your child. In some cases, it can take parents weeks because you’re so drained from listing all the things that are wrong with your child and you feel so guilty about it.”
Vivienne says that the allowance is vital to parents of special needs children because they use it to access private services that inaccessible to them otherwise.
“The DCA is mainly used by parents for speech therapy and occupational therapy because the waiting list for those services right now are chronic,” Vivienne said.
“Some people use it to create a sensory room at home, or to provide activities for the child such as horse riding or swimming.”
However, due to continued cost cutting exercises across Government Departments, The Department of Social Protection recommenced reviews of the DCA on June 17.
“What parents are dealing with now is that they’re getting their autism diagnosis but are then refused the payment,” Vivienne said. “They then have to go through an appeal process, which can take another six months to a year. Now we hear that parents will be contacted in tranches of 100 and asked to complete a review form, to once again confirm the needs of their child. I’m genuinely sick of this Government targeting the vulnerable of society. At the end of the day, these parents are doing the work that they should be doing.”
A spokesperson for the Department of Social Protection said that the reviews of cases to be reviewed will be “limited to 100 per month and will not include claims in respect of any children with life-limiting conditions”.
“About 16 per cent of the claims in payment relate to children with conditions which have been recorded as not to be subject to review at any time,” the spokesperson said.