The families fighting for services for children with disabilities: ‘It’s a soulless system’

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‘We spend so much time fighting for our kids. Parents are made out to be the villains’

Tara O'Callaghan ordered a wheelchair for her five-year-old son Jayden in April 2021. When it arrived exactly 12 months later on April 5th last, it was already a tight squeeze but she has been advised that following adjustments, it will do him for a year.

“I am going to apply for another one immediately, on the basis that it will probably take a year to arrive,” says Tara.

The Co Cork mother says she and her husband, Rory, undergo physiotherapy for their backs because they have been carrying Jayden, who takes clothes aged eight-nine, so much. On a recent trip to Fota Wildlife Park – before the chair arrived – Rory had to carry the child on his shoulders, drawing admiring glances from other visitors who were unaware of the agony Jayden’s father was experiencing to ensure his child could be part of a family day out.

The O’Callaghans waited eight months for a feeding chair which came last January. “He forgets to swallow so is at risk of choking,” says Tara. “He would fall off a kitchen chair.” When Jayden outgrew high chairs, he sat in a toy rocketship chair for meals but having to spoon-feed him dinners meant a lot of agonising hunching over for his mother.

According to Tara, her son, who has been diagnosed with a condition called PVL which is linked to cerebral palsy, has had no occupational therapy (OT) since 2019 and his last speech and language therapy (SLT) was an online session in March 2021. Given the issue with swallowing, she believes SLT is crucial.

‘Measuring his deterioration’

Tom Clonan’s son Eoghan is 20 and, according to the recently elected Senator, he gets no physiotherapy, SLT or OT “except maybe once a year, if even that, to measure his deterioration”.

The disability rights campaigner says he does “DIY physio” on his son and most mornings lifts Eoghan out of bed, gets him into the shower and looks after his intimate care.

Eoghan developed scoliosis of the spine and had surgery at aged 16 but, according to his father, that was after suffering for six years. “It was particularly acute and complicated by the fact that he never got any meaningful physio. The curve in his spine compromised his lung function. He had a scan on his heart and it was so compressed that it was actually in a different part of his chest cavity.”

Surgery, when it did happen, had a "transformative effect" but after years of seeing his son suffer Tom Clonan says: "In Ireland we have the worst disability services in the EU. We have had 18 years of this."

Eoghan, who has a neuromuscular disease and is partially sighted, was his father’s campaign manager for the Seanad election and, according to the former Army captain, is a “most wonderful young man who takes all the pain and obstacles he has experienced with such grace and such good humour”.

Two years ago after an assessment of needs, the HSE approved a number of care hours for Eoghan, so somebody could help get him up, showered and dressed in the morning.

“But we never know from one day to the next” if a person is going to turn up, explains his father who says that because care assistants are so poorly paid there just aren’t enough in the system.

“It is absolutely heartbreaking because we have all that worry and stress every morning about whether someone will turn up, and two times out of three no one will.

“As a parent and as a carer it’s just a miracle that you get out the door with your clothes on in the morning. And then you have to go and do all the things that everyone else does.”

He says people with a disability are “robbed of the enjoyment of so many things because of the cruel and unnecessary obstacles put in their path”.

If Eoghan wants to take the Dart into town he has to give 24 hours’ notice so that a ramp will be at the station, his father says.

When he passed the Leaving Cert – "an extraordinary achievement" given the challenges online learning posed for him – Eoghan was elated to be offered a place in Dublin Business School. But, according to his father, what should have been a moment to savour was ruined when he was told that because it was a private college, the Higher Education Authority would not supply him with the supports he needed.

Following the intervention of Minister for Higher Education Simon Harris, the rules were changed and now all students with disabilities get supports, irrespective of their chosen college.

“But the joy of him getting into university was replaced by that all too familiar feeling of heartache” says Senator Clonan.

‘Child neglect’

Four years after six-year-old Finn Rochford from Trim, Co Meath was diagnosed with autism, his mother, Ellen, says the system has also failed her son.

“I said to my husband ‘I am turning my back on the system and we are going to make our own system’. We lost two full years. It is actually child neglect.”

Finn’s mother is angry and frustrated because she says for 2½ years her son, who is non-verbal, got no OT or SLT from the Child Disability Network Team (CDNT) to which he is attached. CDNTs were established for children with complex needs when the HSE reconfigured services for children with disabilities, amid public outcry over existing services.

Since the Rochfords started paying privately for therapy, Finn’s progress has been staggering, making his mother grieve for the time lost.

When he was diagnosed with autism at aged 2½, his parents were told he would need intensive OT, SLT and physiotherapy.

“That was in 2018 and there were no interventions that year; just parenting courses for nine months,” recalls Ellen.

In 2019, Finn who was toe-walking, a condition most children outgrow when they pass the toddler stage, did see a physiotherapist who brought him to a swimming pool twice and horse riding three times.

When the toe walking persisted, he had a hospital procedure where Botox was injected in both legs which were put into casts up to his knees, in an attempt to correct the condition.

“When he came back to the ward he was still asleep and when I pulled back the blankets and saw his legs I cried my eyes out,” recalls his mother.

When the time came to remove the casts, the Rochfords were shocked to be told they couldn’t bring him back to the hospital because of Covid restrictions “and we had to tackle it ourselves”.

“We were unwrapping for over an hour. We were very traumatised, thinking if he moves the wrong way we might hurt him. We felt on our own.”

Six weeks later Finn was up on his toes again “so it was all a waste”, says Ellen who recalls how she and her husband, Joe, tried to do exercises with Finn as they couldn’t get a physiotherapist to come to the house because of restrictions.

Last July, his parents started paying for Finn to see an OT privately and, according to his mother, the benefits have been “mind-blowing”, and not just with the toe walking. “His whole body has settled. He couldn’t go to the toilet and we had been told to medicate him. He was leaking from morning to night but after six weeks of OT this has settled.”

Thanks to VHI refunds and cutbacks in other areas, they are able to continue with the weekly €90 OT sessions, while they also pay for private SLT for Finn who uses technology, a "Grace app" on an iPhone, to communicate by using images. "That is his voice."

According to Ellen, who gave up her €50,000 a year job in the financial services sector when Finn was diagnosed (“I embrace it”), the family cannot afford to pay privately for therapy but “there is no other way. We have got into mortgage arrears. We don’t take holidays. We don’t have any extra income.

“You are grieving as well. My own mental health is not great, dealing with all this, the sadness of it all. Everything is a constant battle. It’s a soulless system,” says the mother who also has an 11-year-old son, Noah.

“The problem now is it is so hard to get anyone. Private lists are closed [full] because people can’t get the service publicly.”

‘Not complex enough’

Donna Phelan from Maynooth, Co Kildare also says the constant battling for services takes up a lot of her energy. She was told last week that her daughter Holly (8) who has autism, dyspraxia and a mild/moderate intellectual disability was being discharged from her CDNT "because her needs weren't complex enough".

According to Donna, her daughter is now at the bottom of the waiting list for interventions in the primary care system.

A former manager in Penney’s, the mother of three has trained as a special needs assistant and says she is doing a degree in disability studies in Maynooth University so she can be the best possible advocate for Holly. “We spend so much time fighting for our kids. It never ends. Parents are made out to be the villains.”

Holly’s mother says she had to spend almost €3,000 for an assessment because it was the only way to ensure Holly had the supports she needed when she started primary school. She and her husband paid €2,500 for an assessment by a multidisciplinary team. “But we had to have six OT appointments at €60 a go first, because in fairness they don’t want to take €2,500 off you in case you don’t need the assessment.”

The result, says Donna, is that they paid almost €3,000 for something they should have got free, to tell them something they already knew – that Holly had autism and needed supports at school including an SNA.

She fought hard to keep Holly with the CDNT mostly because of concern about the child’s anxiety. “When Covid hit, it got really bad. She was washing and sanitising her hands so much they were red raw. It really got on top of her and she was terrified.”

She tried in vain to get an appointment with a psychologist “and then I was called in last November to be told ‘Holly is okay. We are discharging her from the service.’”

Now she fears it could take two or three years for Holly to be given an appointment with a psychologist in the primary care system. “It makes no sense.”

Holly attends the mainstream Presentation girls’ school in Maynooth and is due to make her First Holy Communion this month. “They couldn’t do any more. Her class teacher rings me every week,” says Donna.

Support group

Rachel Martin from Ashbourne, Co Meath has three children, two of whom Noah (8) and Ivy (4) have been diagnosed with autism. Her despair at the system led her to help set up the group Fuss (Families Unite for Services and Support) which has organised a day of action for Friday next, May 6th.

When Noah was diagnosed there were no CDNTs but the new system distinguishing between complex and non-complex cases has resulted in Ivy being “left in limbo” according to her mother.

“The problem is that the CDNT tells me that ‘my child functions too well’ to be complex while primary care say she is too complex for them to accept.”

Meanwhile, Noah has had no OT or SLT for 2½ years. “I am sure they would say that was due to the pandemic but I have been in touch with CDNT and was told they were triaging kids based on their level of need and that Noah was not a priority. My concern is how can they establish that when they have not seen him in two years.”

Noah, who had only a few words until he was aged four, did get SLT for a few years, but eventually his parents had to start paying for private SLT, OT and play therapy to ensure he did not regress.

With Rachel on a career break from her job as a nurse and her husband, Alan, working as a technician it has been hard to afford these interventions on one “average salary” when OT alone costs €100 a week.

“We used to have two cars; we have one now. We used to have a zoo pass; that’s gone. All the small luxuries are gone. Holidays do not happen,” says Rachel.

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