Josephine Freeman, Kelly Gannon and Dolores Needham who spoke to the Leader this week about their struggles to access vital services for their autistic children. Missing from photo (Jennifer McKenna)
Four Longford parents of autistic children have spoken of their heartbreak at being “completely and utterly let down” by a system which has “failed” them and their families.
In a hard-hitting and damning indictment of Ireland’s autism services, the quartet spoke candidly about how a support process aimed at safeguarding and providing vital cognitive, behavioural as well as speech and language assistance to their children has done the exact opposite.
Josephine Feeney, Kelly Gannon, Dolores Needham and Jennifer McKenna are all parents of children who attend the autism spectrum unit at St Teresa’s autism spectrum unit in Killoe.
All four told of how their attempts to provide emotional and structural support for their sons and daughters have turned into a daily fight to secure life-changing developmental services in the face of a worsening Covid-19 pandemic.
“Our children I suppose would have presented around 16 or 17 months, a lot of us were typically the same,” said Josephine Feeley, who is mother to two non verbal boys, Tristan (5) and Coby (3).
“You are basically told to take on board first that your child may never develop properly, you are not told they are going speak, whether they will ever speak.
“I know no one can ever guarantee this but you are left with that. You have nobody to ring, nobody to talk to.”
Josephine, whose partner is a Defence Services veteran of 21 years and due to travel overseas for six months in the not too distant future, said she has been left languishing on waiting lists for well over year while her children continue to grow and struggle to communicate.
In a further revelation, Josephine revealed how she had even attempted to press her own case for service provision to her two boys by procuring the aid of child protection agency Tusla through the aid of a local social worker.
“Coby is clever, he is a little more switched on and aware of things around him but Tristan we have to keep safe because he could go out a top window, out in front of a car but we are getting no help,” she said.
“I actually got the social worker from the Phoenix Centre to come to me to see if I could get home help and she went through Tusla and basically because I don’t have a protection order against my children I get no help.
“The only way she could get the home help was through Tusla. I even begged and begged to get a special needs double buggy because I can’t even leave my house as they are big boys for their age.”
In a bid to further her children’s future, Josephine has been forced to give up work full time and faced the costly demands of procuring private healthcare insurance due to continued cutbacks.
It’s a quandary which, like her three fellow parents attested to, seen therapists being redeployed from Longford’s mental health facility, the Phoenix Centre to carry out Covid-19 swab testing.
“It’s not just the Phoenix Centre that’s at fault. Right through Ireland, it’s the government controlling all of this,” she said.
“We are told to ask for help and when we ask for help which I have done and it’s closed doors the whole time.
“I feel completely let down by the Government, even the whole system of trying to get your diagnosis, of trying to get your child in, the waiting list, the constant forms, it’s all wrong.”
‘I feel completely let down by the HSE, 100 per cent’
“We have been left completely on our own with our son.”
The direct and unequivocal soundings of mother of two Kelly Gannon this week as she disclosed the onerous task she has endured over the past 18 months or more in fighting for support services for her five-year-old son Darragh.
She explained Darragh has only had four sessions of speech therapy and a block of occupational therapy since turning three and a half.
Instead, Kelly said she was offered enrolment on a so-called 'early bird' course, something she stressed has thrown up more questions than it has answers as to her son's development.
“I was offered the early bird course, it’s okay,” she remarked, getting steadily more emotional as she recalled the events of the past 18 months to two years.
“It runs from September to December, it teaches you stuff but in that length of time your child is not seen by anybody, it’s just their way of pushing your child to the bottom of the list.
“I finished the early bird in December and the OT was going on maternity leave but she wasn’t replaced and instead I got handed a six month plan for my son. That was their way of discharging Darragh from OT for the year.
“In January I got offered the smart course and I went what’s this? I rang up and spoke to the junior psychologist and said 'I am only after finishing the early bird'. I would sooner my son receive therapy than do another course.”
When Darragh started in Killoe, Josephine said she expected speech therapist and occupational therapist would devise a dedicated plan for her son in order to meet his intellectual and behavioural requirements.
Much to her chagrin, those hopes, together with her claims surrounding the apparent cessation of services at Longford's Phoenix Centre has left her very much in limbo.
“In fairness to the occupational therapist, my son needed a one to one SNA and has got it thanks to the occupational therapist but the speech therapist has never stood once in Killoe with my son, not once,” she added, as she turned her focus to the Phoenix Centre.
Like Josephine and Dolores before her, Kelly claimed frontline personnel who would otherwise be providing valuable therapeutic services to Darragh are, in fact, conducting swab testing in the fight against Covid-19.
“Why are these therapists out swabbing and everything left closed? Josephine asked.
“Our kids are losing out. My son has started doing private therapy and it’s in a room downstairs in the house, so if she can do that why can they not do that in a room in the Phoenix Centre?”
They are questions Kelly believes she and dozens more like her need answering as she continues to strive in the best interest of her son.
“The speech therapist Darragh was under only works two days a week so she could have 200 to 300 kids, how is she meant to see all of those kids working two days a week?
“It’s just not possible and like that when people go on maternity leave they are not replaced. The Government announced the other day they are putting €10m into disability services, that’s nowhere near enough.
“There should be more units at each school. More kids are getting diagnosed and it’s a fight to get your child into the unit and we are blessed we have our kids in a unit but every school should have a unit of some description. You shouldn’t have to look outside your own are to get your child an education, they have a right to an education.”
‘I can’t put into words how angry I am, how upset I am and how let down my little boy is and my family is’
An acute lack of management and knowing who or what department to turn to has proven to be an almost constant thorn in the side of Dolores Needham.
She spoke of how she and partner Tony have hit stumbling block after stumbling block at every turn in their endeavours to obtain basic supports for her five-year-old son, Keelan.
“Keelan was referred at 18 months and was diagnosed at two and a half,” revealed Dolores.
“At that stage he was non verbal, he is now what they call pre verbal but it’s not because of any therapies he got.
“It is January since we seen (a) speech and language (therapist). Previous to that you would receive these little cards in the post and you would think brilliant but then all you would see on it is cancelled.”
As a frontline healthcare worker herself, Dolores is all to aware of the pressures that confront the State’s already constrained health industry.
She claimed moves by HSE chiefs to reassign staff in a bid to keep a lid on Ireland’s coronavirus fallout has been to the detriment of not just her child but umpteen others across a system which is in dire need of investment.
“You have cancellations and promises that never come true,” she said, as she detailed how Keelan has not seen a psychologist in two and a half years.
“You go looking for somebody that they have to answer to and you are told ring Tullamore, that’s where their boss is. Then you ring Mullingar after being told that is where their boss is.”
To counteract the gaps in a system Dolores maintained is bereft of investment, she said parents like her are being encouraged to undertake courses of their own.
“I am ringing well over a year and there is nobody, I cannot get a point of contact,” she contended.
“I’m a healthcare worker, that’s my job to be out there on the frontline, it’s not to do my kids therapists jobs.”
Dolores said but for the companionship and sense of solidarity she shares with Josephine, Kelly and Jennifer, the challenges facing her and partner, Tony would be all the more stark.
“I have a three year old daughter and Keelan’s behaviour can be very aggressive and my three year old knows to run and if I ring for help as to how to deal with his behaviour I get a snotty phonecall back saying 'he is frustrated' or he is this or he is that.”
Health Minister Stephen Donnelly last week announced details of a €7.8m capital investment to help clear the huge backlog of thousands of children with conditions like autism on waiting lists for an assessment of need.
It's anticipated the funding will allow clinicians to see more children by working overtime with additional staff being hired.
But as Dolores attested to, for children like Keelan the onus is not on two, three or four years down the line, it's now that those services are needed and put in place.
Dolores said her endeavours and daily struggle to not just hold down but induce critical support services for Keelan has been an incessant and never-ending battle.
“All I get is: 'Here is a course, go on and do that',” she maintained.
“You are on your own. Tony works, he comes home maybe some mornings maybe 4am and Keelan is up at 5am and it’s ‘hi daddy’ and I am up at 7am to head for work for 12 hours. Where do you go? If we didn’t have each other where would we be?
Recent figures show there were 5,083 overdue assessments at the end of March with less than 3pc being as a result of exceptional circumstances.
Effectively in limbo and despite contacting Longford/Westmeath. Fianna Fáil TD Joe Flaherty to further her case, Dolores said the plight she and Tony now face has left her emotionally and physically tormented.
“I feel completely let down by the HSE, completely,” she stated in no uncertain terms.
“There is no support there, there is no support there for us as parents, there is no support there for our kids, for their siblings, there is nothing.
“As for services, what services? There is no services. Nobody answers to anybody. In my situation, I am lost for words. I can’t put into words how angry I am, how upset I am and how let down my little boy is and my family is.”
Blunt and forthright words they may be, they are ones which Dolores hopes senior health chiefs will pay close attention to over the weeks and months ahead.
Claims Covid being used as ‘excuse’ for lack of services
Jennifer McKenna is one parent who just refuses to be another statistic on the State's creaking autism spectrum.
The HSE recently revealed that the average waiting time for autism assessment waitigng lists was 19 months despite claims to the contrary in some quarters that it is taking more than three years for some children to be seen.
She says he her five-year-old daugher Aoife's chances to communicate at her own behest is being compromised by a system that's in dire need of overhaul.
“Aoife was diagnosed at two and a half,” she said, pausing to reveal how she too was a pupil at St Teresan's National School in Killoe.
“Speech therapy, occupational therapy she hasn’t got any since before Christmas and it’s a constant battle,” she grimaced, while looking indiferently across the table.
“Aoife needs her speech therapy. She is saying words now since lockdown, the names of Disney characters and that but she needs that support which she isn’t getting.”
Assertions of double bookings and cancelled appointments has, she alleged, become almost commonplace over the past couple of years.
Jennifer also put forward teh view that she believed Ireland's ongoing coronavirus woes were effectively being used as justification for the lack of services which were being made available to children like Aoife.
“We didn’t get anything before Covid hit in March, so what was the excuse before Christmas?” Jennifer argued, as she provided examples of the types of issues she, too, has had to endure from HSE chiefs.
“I’d have gotten a call maybe an hour beforehand to say it (appointment) has been cancelled,” she said.
Those difficulties have left an indellible mark on Jennifer's all-round take on the state of Ireland's autism services sector and one she insisted requires urgent reconditioning
“I am disgusted, I really am.” she stormed.
“Where do we go? What do we do? We have nobody to ring or contact, there is just no support for us.”
For Jennifer, similar to Josephine, Kelly and Dolores the wait and fight for basic services for her five-year-old goes on.