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'Nobody seems to care': Why some children face years of waiting for 'early intervention'

A family’s address can decide whether their children get quick access to services like speech therapy – or flounder on waiting lists.

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WHEN NICOLA MOORE got a call from the local disability service in Tallaght about scheduling her son’s first therapy sessions, her initial reaction was that there had been a mistake.

The nine-year-old had struggled socially with perennially anxiety, and had recently been earmarked for early intervention after being assessed as having high-functioning autism.

“The woman on the phone said the wait for the service was 44 months. I said, ‘Can you repeat that?’ I couldn’t believe it. He’s in third class now, so this ‘early intervention’ team won’t see him until he’s in secondary school,” Moore said.

He won’t leave my side, he’s so anxious. I can’t wait 44 months, there’s no chance. I can’t just throw him into secondary school in a few years and let him go.”

The nine-year-old is just one of hundreds of children nationwide placed on sometimes years-long HSE waiting lists to receive vital early assessments or therapy for their disabilities.

Frustratingly for parents, families living just a few suburbs apart can expect vastly different outcomes due to the accident of their geography, TheJournal.ie’s new investigative journalism platform Noteworthy has found.

In some areas, children face the dual hurdles of long waiting lists for initial assessments – the gateway for most to receiving State-funded therapy – and further delays once they join the queue for stretched services.

In practice, that can mean waiting more than two years between diagnosis and so-called early intervention for those unable to afford private treatment, which typically costs €100 or more for a one-hour speech and language therapy session.

For children in their most formative years, that delay can mean the difference between success or failure at school, with knock-on effects for their ability to work and enjoy fully functioning, social lives as adults.

In this investigation, we have focussed on the provision of speech and language therapy as an estimated four-fifths of all children assessed under the Disability Act require the treatment.

A 2014 review of Ireland’s approaches to language development noted that it was “crucial to all aspects of children’s lives and one of the best predictors of educational achievement”, which meant that early intervention and treatment was critical.

However similar problems affect the delivery of other children’s disability services, such as occupational therapy and physiotherapy, in many parts of Ireland.

Those on long waiting lists are often the most complex and difficult-to-treat cases, for which children are waiting for the attention of multiple specialists.

shutterstock_596748176 Source: Shutterstock/Africa Studio

An accident of geography

Since 2016, bringing down the numbers of children on long waiting lists for speech and language therapy has been the target of focussed investment from the HSE.

That included a target that no child should wait longer than a year for speech and language therapy. Some €4 million in extra funding was earmarked to recruit an extra 83 staff to help reduce backlogs.

However, while the overall numbers of children waiting for therapy has been reduced, the extra money has had little impact on long-term waiting lists. 

In September 2016 there were 762 children in the year-plus ‘long waiters’ category. While the number had dropped to 487 a year later, by the same month in 2018 it had increased again to 694 and continued to climb.

Many of the problems were concentrated in just three of the HSE’s nine designated ‘community health organisations’ (CHOs).

Official data shows that more than half of all patients nationwide – the vast majority of whom are children – on waiting lists of a year or more for speech and language assessment were in just one of the regions, covering Dublin city’s south and west, and Kildare.

At the end of January, there were 406 people on the waiting list for over a year in the area, while 136 out of that cohort had been waiting more than two years for an initial assessment.

By comparison, in the neighbouring health area, covering Dublin’s south-east, Dún Laoghaire and Wicklow, there were only 17 people waiting more than a year for assessment.

At least one patient in each of Cork’s south city and Dublin’s west had been waiting more than five years for a speech and language therapy assessment as of January last year. 

When it comes to receiving therapy following a diagnosis, the picture was little better for many parents in Dublin’s west.

However the longest waiting list for initial speech and language treatment was in the CHO region covering much of southeast Ireland, including Carlow, Kilkenny, Wexford, Waterford and south Tipperary.

Some 274 children, more than one-third of the national total, had been waiting longer than a year for their first appointment within the region.

In the health region covering Cork and Kerry, there were 187 children on waiting lists for a year or longer. The three CHO areas together accounted for nearly 93% of the 741 children on long waiting lists for speech and language therapists nationwide in January.

20190418_Waiting_Lists Source: Statista/HSE

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Within Cork city alone, there were 78 children who had been waiting more than two years for initial therapy.

The rising figures come despite the HSE employing significantly more speech and language therapists. There were the equivalent of 929 full-time of the staff employed in community health organisations late last year, up from 868 in December 2016.

Vickie Kirkpatrick, who chairs the Irish Association of Speech and Language Therapists (IASLT), said the HSE’s waiting list-reduction initiatives were “like a finger in the dyke” trying to fix problems that stemmed from a lack of proper national planning to react to changing demand.

“By the time you get trained staff in you might create a dent, but that just creates a problem somewhere else,” she said.

Huge regional variations in the numbers of therapists available per child with special needs were identified several years ago, while since then the numbers of children diagnosed with conditions like autism have also risen significantly.

The waiting game

A ream of internal documents from HSE and Department of Health staff, obtained by Noteworthy, highlight recurring themes – largely stemming from poor management – that are helping to drive the stubbornly high waiting list numbers in problem areas.

Therapists often complained about having poor resources in the regions where they were most needed, issues that were compounded by slow recruitment processes and the lack of replacement staff when members of the largely female workforce went on maternity leave.

Clinical staff were also reportedly tied up doing paperwork that could be performed by non-specialist staff whose administrative roles were allowed to become vacant.

There were also concerns that therapists were being pushed into unrealistic workloads, which had an impact on their ability to deliver proper services to children. 

Prized appointment slots were also being taken up by people who failed to turn up for the sessions, however no systematic way of cutting down on the no-shows had been introduced.

One document noted that recruitment and retention remained “challenging” in the sector. Only 69 out of the extra 83 speech and language therapy posts funded through the €4 million investment were filled once maternity and parental leave were taken into consideration, it added.

An analysis from the HSE’s national office from April last year highlighted a string of ongoing problems in the Dublin west, south and Kildare region when it came to long waiting lists.

They included the need to prioritise children requiring a formal assessment at the expense of less-urgent cases.

Because of capacity problems within various parts of the assessments process, some children were facing waits in the area of up to five or six years, the analysis noted.

The HSE has faced a string of court cases from families suing over delays in children receiving assessments, which under the Disability Act should be completed within six months of an application.

Internal records from the region covering Ireland’s southeast also highlight ongoing problems with recruitment and management of the local operation.

A report on Wexford speech and language services from January noted that it was currently taking the HSE’s national recruitment service 40 weeks to fill vacancies.

Wexford An internal HSE document Source: Noteworthy

Around one-fifth of therapists’ time was being spent on administrative tasks, the report added. Hiring dedicated staff to perform those duties would help free up clinicians for appointments.

It said that nearly 20% of appointments weren’t attended due to no-shows or cancellations, effectively meaning two slots were taken up for one session after allowing for rescheduled appointments.

An increase in administrative staff could allow for reminders to be sent to parents, while the report also recommended the implementation of an IT system that could send text reminders.

A briefing document from December on long waiting lists in Waterford noted that therapists were “working to their full and safe capacity” and it was not possible to address those waiting for treatment without the replacement of maternity leave staff.

It said that the national targets for daily appointment numbers were “not safe” and the author, a clinical manager of the service, “cannot ask staff to achieve this target”.

Senior staff on maternity leave were typically replaced by “agency staff with little experience” who themselves needed supervision from senior therapists, further reducing the number of appointments carried out, the document added.

Separate letters from an HSE manager said that new speech and language therapy recruits were expected to be able to perform seven therapy appointments per day, however in some of the areas with the longest waiting lists the average figure was fewer than three per day.

The letters noted that the expectation may not be realistic for therapists in social care providers, whose patients typically had more complex needs.

Many of the complaints had already been identified in an earlier 2017 review of speech and language and other therapy services, which added that poor IT infrastructure was leading to reporting errors and limiting the time available to therapists for clinical appointments.

In a statement, a spokeswoman for the HSE said it was “fully cognisant” of the stress that waiting for therapy services caused for families, and improving waiting times was one of its key priorities as part of an overhaul of children’s speech and language therapy services.

The HSE’s new programme aimed for “a national equitable approach in service provision for all children based on their individual need and regardless of their disability, where they live or where they go to school”, she added.

The HSE’s national plan for 2019 included funding for another 100 new therapy posts by the end of the year, although it was accepted that more resources were needed, she said.

A report last year predicted another 400 therapy posts were needed to meet demand for children’s services.

All current HSE-funded children’s disability services were being overhauled to create new, interdisciplinary teams around the country, but there appears to have been little progress in the rollout of the new networks in the past three years.

90111117_90111117 Source: Eamonn Farrell/RollingNews.ie

The impact 

Both the families affected by long waiting lists and staff tasked with delivering services agree that the changes and investment needed to deliver proper services to every part of the country are yet to materialise.

Lorraine Dempsey, from the Special Needs Parents Association, said that prioritising assessments because of the threat of legal action had often come at the expense of children who were waiting for treatment as there was no statutory “right to intervention”.

She added that assessment and treatment should always come “as early as possible” as children were constantly developing and any delays in that development could have significant knock-on effects.

A young child with autism, for example, might act out at home and in school, but those behavioural problems were often caused by their own frustration at their inability to communicate with their peers, parents and teachers, she said.

Parents want to have options in the future, and they want their children to have as much of an opportunity for independent living as possible – and the foundations for that start very early on.”

SNA Health Cuts Protests Lorraine Dempsey Source: Laura Hutton/RollingNews.ie

Kirkpatrick said the “stop-gap measure of waiting list initiatives” failed to address fix systemic problems with how speech and language therapy was delivered.

“The importance of early intervention in those formative years might translate into more complex issues later – that means more of an impact on schools, or added costs in later years due to mental health issues or academic failings leading to lower employment.” 

Faced with a choice between a harder life for their children and themselves, those parents with the means to afford to pay for treatment are frequently forced to turn to private practitioners.

Breeda De Vries’ son was diagnosed with developmental language disorder after a drawn-out series of tests to understand why he was having difficulty forming words as a toddler.

However it was nearly a year after his assessment before he started receiving public therapy sessions in Lucan, while since then the treatment had been sporadic due to further year-long waits between treatment ‘blocks’.

“He was really frustrated, it was causing behavioural issues because people couldn’t understand him. He was lashing out; the big concern there as well was that he couldn’t go to school,” De Vries said, adding that she felt the only option was to pay for private treatment.

“It has had a huge impact on behaviour and it’s had a huge impact on his confidence – when it’s his turn to read at school, he won’t speak,” she said.

He knows he doesn’t pronounce things properly. Obviously if he had got more help before he went into school it would have been better.”

For Moore in Tallaght, who is a full-time carer for a second, adult son with an intellectual disability, the only option now was to “get the money up somehow” to pay for private therapy for her younger boy.

“I believe that the system is designed to wear you down. You’re at home dealing with children’s needs all the day, how do you have the energy to fight for services as well? Nobody seems to care.”

- With Ken Foxe

Know more about this story or want to share your experiences? Email the author via peter@thejournal.ie or send a message using the secure Threema app, ID: ESUCBYMK

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