Children join the long list for assessment of needs in Cork

ALMOST 750 children were on waiting lists for an Assessment of Need (AON) in Cork at the end of 2023, including 563 who had been waiting for more than three months.

An AON is an assessment carried out by the HSE for children or young people with a disability. It aims to identify a child’s health needs and what health services are needed to meet these needs.

A parent or guardian can apply for their child to receive an AON from the HSE if they feel their child may have a disability.

The HSE must acknowledge the AON application within 14 days. The first stage of the assessment, which involves a “desktop information gathering” process regarding the person’s needs, must be completed within 12 weeks.

If the assessment officer believes they do not have sufficient evidence to indicate a disability, they will write to the parents and the person who made the application, explaining this.

If the evidence collected indicates that the person may have a disability as defined under the Disability Act, the assessment officer will then refer the person for the appropriate clinical assessment.

The second stage of the AON starts when this referral is made, and a further 12 weeks is allowed for this stage.

At stage two, the child will be referred for assessment to one or more services. At that point they will go on the waiting list for a children’s disability network team (CDNT) and/or Child and Adolescent Mental Health Services (Camhs) and/or primary care services, such as speech and language therapy, occupational therapy, and psychology.

The latest waiting list figures revealed that 847 children were on the waiting list for an AON in Cork at the end of 2019, including 627 who had been left waiting over three months.

By the end of 2022, the waiting list had reduced to 618 children with 483 overdue by more than three months.

However, 2023 saw the total number of children waiting for an AON increase to 742, while 563 AONs were overdue.

A spokesperson for Cork Kerry Community Healthcare (CKCH) said waiting times for assessments have reduced significantly in the past year due to additional capacity provided by approved service providers.

However, parents in Cork have highlighted difficulties in accessing AONs, which are the vital first step to ensuring more support for their children.

Cork Parents Unite are a group of parents whose children attend Carrigaline Community Special School and Rochestown Community Special School.

'STRUGGLE'

A spokesperson for the group highlighted the difficulties accessing AONs and subsequent services and therapies.

“The struggle to access AON, services, and therapies is just too much for families already coping with so much,” she said.

“The burden put on families is too much.

“The waiting lists for AON are too long, and it is heartbreaking that even when a diagnosis is made, there are little to no services available for our children is a punch to the gut.

“Yet parents have to keep on fighting for services and therapies that may never come.

“Even the Tánaiste acknowledged at the Fianna Fáil Árd Fheis that access to needed therapies takes too long and is too difficult for children and their families.”

The spokesperson added that all the children of parents in Cork Parents Unite were forced to wait for an AON.

“The therapeutic interventions should start immediately after diagnosis,” she said.

“That the wait for services is not months, but years is a shameful indictment of the HSE.

“Our children may not reach their full potential for this reason.

“No other cohort of children in this country have been impacted this badly,” she said. “No matter the good intentions of individuals, the HSE has not put the children first in both availability of AONs and services thereafter.”

‘You feel helpless at every turn’

In March 2022, Ballyphehane mother Claire Reardon told The Echo that it had been nothing but “battle after battle” to secure any services for her son Darren, then aged four.

Just over two years later, Claire, who is now a member of Cork Parents Unite, revealed that little or nothing has changed.

Her son Darren was referred for speech and language therapy and occupational therapy in 2019, before he received his formal diagnosis of ASD. He was left waiting two-and-a-half years for an autism assessment.

Darren was eventually transferred to Enable Ireland for services but Claire said that the support her son received amounted to very little.

At the time, Claire told The Echo that children with autism get no support, and the lifeline at school was then snatched away.

“You feel helpless at every turn,” she said.

“It feels like there’s no support other than yourself, your husband, and your family just trying to keep it together.”

Just over two years later, Claire revealed that Darren has received “very little support from his service provider” since The Echo highlighted his case.

“At a recent family forum, I was informed that Enable Ireland currently has their full team of funded SLT [speech and language therapists] support,” Claire said.

“When I enquired as to why Darren is still on the waiting list, I was told that they have more children on their books than they can provide a service for.

“This excuse has been used for a couple of years now so I asked who in the HSE have they asked for more funding to support these extra allocated children. I wasn’t given an answer.”

Darren is still yet to receive support from speech and language therapy despite being non-verbal at seven years of age.

“Currently he is getting nothing at all,” Claire said. “He is lost in a system that pits him against all the other children and no one gets anything.

“We as his parents are getting frustrated at the constant chasing up and fobbing off while our son fails to improve — but who else will speak for our child who cannot speak?

“It is unfair on the good people of Cork who have blind faith in what they read that children with disabilities and their families are getting support when the reality is that Darren is getting barely any help.

“Like other families in our situation, we are getting burnt out from fighting what is an impossible battle for our child with obstacles at every turn.

“Children with disabilities who attend special schools are ignored. You can tell a lot about a society by the way they treat their most vulnerable people.”

Responding to The Echo’s series on Cork children and their fight for services, a spokesperson for CKCH said: “We sincerely regret that anyone in need of our services has to wait longer than either we or they would wish.

“We wholeheartedly apologise to the young people and children who have been waiting for longer times in accessing much needed services and supports.

“Unfortunately and despite incredibly hard work done by our teams, there are waiting lists in some services which are too long.

“While there are reasons as to why these waiting lists have occurred, we are aware that what’s important for children and their parents/guardians is the work underway to address waiting lists.

“Intensive work is underway in every part of our services to reduce waiting lists,” the spokesperson added.

“We are using telemedicine, extended clinic hours, triage, working with S38 and S39 agencies, and a wide range of other initiatives and innovative practices harnessing the energies of all staff.

“Substantial efforts have been made across service areas to improve efficiency and patient outcomes and reduce waiting list times.

“For example, the transition to an integrated eye service in the new state-of-the-art Primary Care building in Ballincollig marks a significant step in the new model of eye care provision for 2024.

“From March 2023 to March 2024, the waiting list for eye care services for children has reduced from 3,234 to 1,174 — a 64% reduction.

“Through a waitlist initiative last October, we offered more than 3,300 appointments, with 2,252 attending, resulting in a substantial reduction in the waiting list for eye care services for children. We remain committed to seeing high priority patient referrals as early as possible.”

CKCH also thanked the many staff involved for their hard work and commitment.

“There are areas where this work has already made a difference and we have had significant success with initiatives like waiting list blitzes,” the spokesperson said.

“However, we acknowledge that even more work is needed to address remaining waiting lists, and we continue to make improvements so that we can provide the care needed as quickly as we can.

“We would also like to reassure the public that across all our services, urgent cases are prioritised, which means that those in the most urgent need are seen more quickly than others.

“As a general point, we’d like to point out that waiting lists are due in part to the ongoing increase in the number of people needing to access services,” they added.

“For example, Camhs are seeing a 31% increase in referrals. Despite this, we are responding to more than 90% of urgent referrals within three days.”