Kellie’s son doesn’t speak in school, and struggles with social skills. Now in third class, he has been waiting for an assessment of need for the past three years.
Kevin’s son had speech delays from an early age and his parents suspected he may be on the autism spectrum. About two years ago, their son entered the system to get an assessment. “We’d no idea how it worked or what we meant to do. There was a lack of clarity in the process, and we had to repeat our story so many times. It took two years before he was seen; they said he didn’t have autism – but now he’s on another waiting list to get support with his speech delay.”
Parents, campaigners and clinicians say access to services and support is based on a “postcode lottery” and very dependent on which of the nine community health organisation areas that a child lives in.
This, the Health Service Executive says, is among the reasons it has introduced new “standard operating procedures” (SOP) which will see children given an initial assessment of need within six months.
“An internal HSE review in 2016 confirmed that the approach was not consistent across the country,” a HSE spokesperson says. “This led to . . . inequity in terms of time afforded to ‘assessment’ versus ‘support or treatment’ interventions. The [new] standard operating procedures for assessment of need [will] ensure that children with disabilities can access appropriate assessment and intervention as quickly as possible.”
Several experienced clinicians who spoke to The Irish Times, however, say that the new operating procedure, while ensuring the State meets its legal obligations – and therefore cannot be sued – is unethical, does not meet the needs of children and will ultimately lead to longer waiting times for children who are in need of clinical interventions.
Dr Irwin Gill is a consultant paediatrician working in disability and rehabilitation in Children's Health Ireland at Temple Street. "The new SOP changes how assessments are carried out," he says.
‘Cynical attempt’
“Previously, these were multidisciplinary, in-depth assessments giving a detailed description of a child’s needs. Now, there will be a maximum of two clinicians to do a 90-minute assessment despite serious objections from clinicians as to what can be completed in this timeframe.
“It’s not a meaningful assessment; it does not help children and merely moves them to another waiting list for a more useful assessment, for which there is no statutory time limit and therefore no legal recourse. The prevailing opinion is that this is a cynical attempt by the HSE to protect itself rather than act in the interests of children.”
"Clinicians on the ground feel disheartened and many feel they cannot stay in the HSE if this is the future" says Mark Smyth, clinical psychologist and past president of the Psychological Society of Ireland. "We raised these concerns in August 2018 and they went ahead anyway, only an immediate cessation of the [preliminary team assessment] can resolve this."
Another HSE psychologist, Alex (not real name), speaking to The Irish Times, likened the new procedures to telling a surveyor that they had five minutes to assess a mansion.
“It’s against all our ethical practice,” they said. “We can’t assess in 90 minutes as to whether or not a child has a disability, but if we say they don’t, they won’t get services. So most of us will probably recommend further assessment and say we suspect a disability. I feel despondent.”
Martin (not real name), a senior HSE psychologist, says “we are being forced to act unethically. I never in my worst fears thought this could happen: a screener is not an assessment of need – we’re going to miss what the children really need.”
Alex says clinicians have not seen the clinical or theoretical underpinning of the new process.
The HSE, however, says that it sought independent clinical opinion. The process is currently under review, and that review is expected to be complete by March 2022, with interim reports issued in the meantime.
But clinicians say that the terms of reference mean that the chair may or may not invite submissions from professional bodies, and they fear they could be ignored.
Unfit for purpose
The Psychological Society of Ireland recently surveyed its members on the new standard operating procedure, with 69 psychologists replying. Of these, 81 per cent had completed an assessment of need in 2020, with 89 per cent stating that the assessment method did not assist children having their needs met in a timely manner, and 95 per cent of clinicians saying it was not fit for purpose.
Three per cent said they had left disability services as a result of the new system and another 40 per cent said they were likely to leave.
The HSE says it is aware of this and other surveys but that their National Clinical Programme for People with Disability, “while valuing the opinions expressed by the members who responded to the surveys, does have some concerns about the survey instruments, the survey response rate and the interpretation of findings and have highlighted same”. This was in their response to the Association of Occupational Therapists, the Irish Association of Speech and Language Therapists and the PSI.
The number of families seeking assessments has skyrocketed over the past decade. In 2007, new laws came into effect requiring the State to provide assessments of need. In that year, the numbers applying for an assessment of need stood at 2,535, with 1,392 assessments completed. By 2019, that figure had risen to 6,596 applications, with 3,312 assessments completed.
Martin says that there is a severe shortage of clinicians who can carry out assessments.
“Many parents are too tired and broken to keep fighting the system. We see tears regularly. I don’t know how they keep going.”
Plight of parents: ‘We’ve spent all our savings on private therapies and we’re in a precarious position now’
The Irish Times has gathered dozens of stories from parents whose children have had or are waiting for an assessment of need with a speech and language therapist, occupational therapist or psychologist.
The majority of parents who spoke to us said they felt the system as it stands is adversarial. Many say they have had to go private, but others simply cannot afford to.
One parent waited 18 months for the assessment and was recently told his daughter would get speech and language therapy, occupational therapy and psychology support in 2024.
Several said their children were “lost” and, with clinicians including psychologists redeployed for Covid-19 swabbing last year, falling behind.
One parent of an autistic child, who currently lives in the US, says she would like to return to Ireland but is afraid that her son will not be able to access the support he needs here and could fall behind, so she has decided to stay put.
Another parent received a letter in January 2021 , stating they needed to complete a form by December 24th, 2020.
Lynda’s son, Sé (9), has Down syndrome. “Every professional body seems to be against this new HSE approach,” she says. “The autistic community will be particularly badly affected.”
She says Sé has had sporadic support over the years. “Sé was referred for an autism assessment three years ago – it hasn’t even been acknowledged. There is maybe one occupational therapy session per year. No speech and language for the first few years and then a block of six hours before he’s signed off the system.
“When I started fighting for services after Sé was born, I was told I have unresolved childhood issues.
“ Instead of working together, it’s about blame. We’ve spent all our savings on private therapies and we’re in a precarious position now.”
Sé was discharged from early intervention and, at school age, moved to the school-age team. Apart from a generic circular, she says that she last heard from the HSE in 2017, and Sé was due to be seen by last August.
“We’ve heard nothing,” Lynda says.
