Charlotte Cahill was worried. At 15 months old, her bubbly daughter, Cyra, who loved playing and making her parents laugh, began to change.
She lost her first words, such as “Mama”, “Dada” and “car”. She became quiet, subdued and retreated inwards.
“It was like waking up to a different child,” says Charlotte.
A public health nurse advised her that a full assessment of needs was required to gain a proper understanding of Caya’s condition and help identify the services she required to help meet her full potential.
Three years later, she and her mother are still waiting for proper assessment.
In the meantime, Cyra’s frustration at being unable to communicate means she can get aggressive and hurt herself in the process.
“She banged herself on the wall, she had a busted blood vessel in her eyeball from punching herself in the face ... just extremely bad self-injurious behaviour,” says Charlotte. “It’s heartbreaking to watch.”
In desperation, she shared videos of her child self-harming with local HSE staff in Tallaght and, at one point, pleaded on her knees for support. The result, she says, is that her child has been bounced around between different children’s mental health and disability services.
She eventually secured a private assessment, at a cost of €1,850, which concluded that Caya was autistic and had “pathological demand avoidance”, meaning even routine activities could result in an emotional meltdown.
She is likely to need occupational therapy, physiotherapy and speech and language therapy to help overcome her difficulties, but is still waiting for a full assessment.
While the wait goes on, Charlotte has tried to teach herself by attending private sessions, which can cost up to €120 an hour, learning from other parents and getting tips online. She feels she is making some progress with her daughter, but it has taken a huge toll.
“She has good days and bad days ... I’m worn out and exhausted. The stress of trying to fight for everything. My marriage has broken down because of all the stress in the house,” she says. “It’s emotionally draining – no one seems to want to take responsibility.”
If a child is going through a critical developmental period, and they don’t get the right critical interventions, it may [cause] a long-term loss of opportunity to develop particular skills
— Mac MacLachlan, professor of psychology at Maynooth University
Under the Disability Act (2005), health authorities are required to complete an assessment of a child within six months. The child is also entitled to an assessment report and a statement of the support services they will receive.
Yet, according to records obtained by The Irish Times under the Freedom of Information Act, there are about 13,000 children with disabilities waiting for an “initial contact” – which can be anything from a phone call explaining services or setting agreed goals – by health services. Of these, more than 9,000 – or two out of three – are waiting for more than 12 months.
Parents, professionals and other stakeholders say, in many cases, children are waiting several years for any meaningful contact. Yet, experts agree early intervention is vital to securing positive outcomes for children during their preschool and early-school years.
Mac MacLachlan, professor of psychology at Maynooth University, says long waits for access to vital therapeutic services can have “catastrophic” long-term consequences for children.
“If a child is going through a critical developmental period, and they don’t get the right critical interventions, the consequences may not just be a delay in that developmental stage, it may be a long-term loss of opportunity to develop particular skills,” he says.
There is also backlog of more thorough needs assessments, which identify whether a child has a disability and what services are required to meet those needs. Latest figures indicate there are almost 9,000 overdue assessments.
In an effort to deal with backlogs, the HSE introduced a more streamlined process in 2020. Initial assessments needed to be completed within 90 minutes rather than hours of observation and evaluation.
While the number of overdue assessments fell significantly as a result, the changed process was criticised by some professionals as “clinically unethical” and was struck down by the High Court in 2022 on the basis that it did not comply with disability laws.
This meant up to 10,000 assessments of need were suddenly invalid, requiring these children to be reassessed, adding further to backlogs.
Katie O’Donnell’s son, Charlie (6), is one of the thousands of children whose assessment was found to be invalid by the courts. This, she says, is the least of her concerns. She just wants to access basic therapeutic services to help meet his needs.
He has a visual impairment, is non-verbal and has a moderate intellectual disability. It means he is dependent on his parents for everything from toileting to feeding to changing the channel for his cartoons on TV or playing with his toys.
In the four years that have passed since he was assessed, Katie says support services have been “practically nonexistent”.
“He has hasn’t see an occupational therapist in more than 12 months, a physiotherapist in over 12 months and he’s seen a speech and language therapists a few times in the past year, only because I am constantly chasing it,” she says.
Charlie, she says, might be a very different child if he had meaningful and professional input over that time.
“I feel that we could have been doing so much more for him, and a lot of it has been wasted time,” she says. “It feels like I’ve been hitting my head off a brick wall, trying to get support ... It’s heartbreaking to know that’s what he needs – and I just cant get it for him at the moment.”
Katie, a qualified primary schoolteacher, has been caring full-time for her son. She says she has trained herself to provide what assistance she can and relies on occasional private support, but says even these therapists are hard to find and have waiting lists.
“The costs can be extortionate,” she says. “A recent one-hour online consultation with a speech and language therapist was €150 and that was just getting advice on how to use a communication device for him.”
In the meantime, she and her husband try to keep Charlie occupied and engaged. It is a full-time job.
“He gets bored and frustrated at home, so we are out all the time. We try to think of an outing in morning and afternoon. It is exhausting ... We don’t have the energy or mental capacity to be out all day, every day, and the expense that brings as well.”
Experts agree there is one key reason why children are waiting so long for their needs to be met: acute staff shortages.
Latest data indicates there are about 800 vacancies across child disability network teams, with gaps of up to 60 per cent of staff in some individual teams, according to records obtained by The Irish Times. Efforts to boost recruitment have been slow to date.
Linda Kelly, national secretary of trade union Fórsa – which represents many professional staff in these teams – says “graduates in many cases aren’t taking HSE contracts and experienced professionals are leaving to go into private practice, or just leaving the professional altogether”.
The reason, she says, is a “credibility and confidence problem” with reforms to the wider disability service.
While many of changes may have made sense on paper, she says a lack of consultation with staff and concerns over clinical governance, safety and delivery of services have not been addressed.
A recent academic review of the reforms – known as Progressing Disability Service – found evidence that many children now have less access to services since the reforms were introduced and questioned the evidence-based for the changes. It concluded that the system “may not be a fit-for-purpose” model for meeting the current and future needs of young people with disabilities.
Gareth Noble, a solicitor who specialises in children’s rights, says staff shortages are so acute that parents are receiving notifications stating that it will be 2027 before they will get an introductory meeting.
“They have effectively set up a situation where they are openly telling parents that there are no interventions available in many cases for their children,” he says.
The HSE, however, says vacancies are a sign that health authorities are operating in a “very competitive global market for healthcare talent”, with significant shortages right across the world.
It points to a “roadmap for service improvement”, announced last year, which has “robust” recruitment and retention targets and aims to achieve a “quality, accessible, equitable and timely service” for all children with complex needs and their families.
It says child disability network teams are providing supports to more than 40,000 children, but accepts there are “significant staffing vacancies” and growth in the number of children with complex needs who require support.
“Everyone working in the HSE is very aware of the importance of children’s disability services and early intervention in the lives of many families all over Ireland,” the HSE said, in a statement. “It is not acceptable to have to wait an extended time for either an assessment of your child’s needs or therapy that would help your child and family. We are sorry to those families who have had a poor experience in trying to access services.”
It points to some progress being made, such as an increase in the number of assessments of need being completed, up 28 per cent for the first half of this year compared to the same period last year.
This increase, it said, is due in part to a new targeted waiting list initiative that commenced at the end of May this year.
The Government points to an expansion in training places in higher education for much-needed therapists – announced yesterday – as a sign of its commitment to the area; this aims to boost graduate numbers in these areas by about 35 per cent.
Minister for Health Stephen Donnelly said the planned student expansion in physiotherapy, occupational therapy and speech and language therapy “is a welcome development and we expect to be announcing additional places in respect of other disciplines in the near future.”
Will it go far enough? Most observers agree that a dramatic increase in therapists is needed, as well as measures to address what some professionals describe as a “morale crisis” in services, with high levels of staff turnover and burnout. Many are also seeking a sweeping review of current reforms by the National Disability Authority which should take into account the views of all professionals and families at the coalface.
Caya doesn’t have an intellectual disability; she understands and she can learn. She could make great progress. That’s what makes all this even harder to deal with
Meanwhile, Cyra is about to turn five. She should be starting into primary school, but her mother has been unable to find a place for her. This is partly because she still does not have a full assessment of need from the HSE identifying Cyra’s needs – three years after first seeking one.
“We’ve applied to 32 schools and have been refused by them all or put on waiting lists,” she says. “As things stand, she’ll have to go back to do a third year of preschool while other children progress to primary.”
The main support, she says, has been from other parents – through groups such as Families Unite for Services and Autism Parents Ireland – rather than through official sources.
The most frustrating thing, she says, is that Cyra could make huge strides with the right support.
“She doesn’t have an intellectual disability; she understands and she can learn. She could make great progress – and that’s what makes all this even harder to deal with. It the same with so many children like her. They’re being robbed of their potential.”
