Disability assessments: ‘We’re burnt out, exhausted. Our savings are spent’

Amanda never envisaged the scale of the uphill struggle ahead when she first applied to assess her son’s condition.

Early intervention is crucial in fulfilling the potential of vulnerable children, but she has spent six years waiting for an assessment of needs which would identify the services he needs.

She has three children including sons Nathan (11) and Max (8). Nathan has been diagnosed with attention deficit hyperactivity disorder, dyspraxia and sensory processing disorder, while Max’s autism diagnosis came this year.

“An assessment of need [AoN] officer spoke to me on the phone, said there were no red flags, and closed Nathan’s file.

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“He was referred to an occupational therapist but we waited 2½ years, during which time he struggled with concentration, handwriting and spelling.”

Amanda had been waiting six years for an assessment, but her appointment was cancelled because the High Court found the HSE's methods unlawful.

After objecting, she finally got an appointment for Nathan, and he is now being referred to a multidisciplinary team.

She is worried that Max, her younger son, will need to have his assessment redone because it did not comply with the law.

Why are parents and children waiting so long for disability assessments and therapeutic interventions?

Last year, parents, advocates and frontline professionals said the HSE’s new system for assessing children with disabilities – involving short “preliminary team assessments” – was clinically unethical, did not meet the needs of young people and would ultimately lead to longer waiting times.

The HSE insisted the new approach was aimed at speeding up assessments and ensuring greater equity in accessing support and treatment.

Last March the High Court found the HSE's assessment model was unlawful. And last week families protested in Dublin, Cork and Enniscorthy, urging the Government to improve disability services for children.

So where do these children stand now? We contacted dozens of families to find out the impact these long delays in getting assessments and interventions have on vulnerable children with conditions which require early intervention.

Lisa is the mother of an eight-year-old boy with multiple neurodiversities including autism, ADHD and dyspraxia.

Last December, her son was accepted by the HSE’s children’s disability network team but Lisa is one of several parents who says it feels like their children are “being moved from one waiting list to another”.

“He has had numerous referrals from GPs, primary care, Temple Street consultants, and the assessment of needs team. He has been trying to access HSE assessment and services since June 2021, but we have been discharged from all the lists in our county.

“We are told ‘he was too complex’ for primary care services – but surely a child who is this complex requires intervention sooner rather than later. He is being greatly impacted by these delays and we are extremely worried about him.”

Many parents have been advised by the HSE that children’s disability health services are being re-organised – as part of a national programme called Progressing Disability Services – but many say it feels like they are being left in limbo.

In a memo dated March 24th, 2022 to heads of disability services and other HSE staff, HSE head of operations for disability services Bernard Regan advised that while scheduled AoNs should proceed as a first step, assessment officers are "asked not to issue any final assessment of need reports based on [preliminary team assessments]".

The Irish Times has seen correspondence between parents and the HSE in which families are advised that a revised system, under consideration, will “likely result in a considerably more detailed assessment” for children but that “there are some delays while a new assessment format and the required resources are being put in place”.

People are screaming for help but some of the support they are getting is damaging

Gillian Kearns runs an online group for children with additional needs. As well as being the mother of an autistic child, she herself has autism. She says in some cases children or their parents are getting the wrong support.

“My child has not been seen but was marked down as having had an intervention because I attended a six-week course on understanding autism. I didn’t need that, I am autistic, but if I didn’t go, the HSE would have said I am not engaging. People are screaming for help but some of the support they are getting is damaging,” she says.

The HSE said that because there was no open file – which was because he had not been assessed – they could not accept our application

When The Irish Times spoke to Lynda last year, her son Sé (10), who has Down syndrome, had been waiting more than three years to access services on the school-age team. Assurances that he would be seen by a certain date came and went.

In April 2022, Sé finally met the disabilities team and his key worker spent an hour working through his needs.

“She will assemble a team and we are due to meet with them in two months,” says Lynda.

She says she has been through a “gruelling complaints process” over waiting years to get a communications device for her son, who is non-verbal.

“The HSE said that because there was no open file – which was because he had not been assessed – they could not accept our application.”

After representations to the office of Anne Rabbitte, Minister of State for disabilities, however, Lynda got the device for Sé.

“He was making sentences almost immediately,” Lynda says.

She is now struggling to find a school place for Sé.

Lynda is one of many parents who say that, even where assistive technology is provided, schools often do not have the resources to teach and support the children in using them.

She says she is “burnt out, exhausted and out of money for private assessments and, in particular, therapies; our savings are spent”.

Mark Smyth, past president of the Psychological Society of Ireland, says waiting lists will persist as long as the HSE struggles to recruit key professionals needed to assess and provide vital interventions: psychologists, occupational therapists and speech and language therapists.

Clinicians are burnt out. People are leaving child disability services and we are not training enough of the three professions to meet current or future demands

“It is positive that a workshop to figure out the next steps, involving all stakeholders, is being planned,” says Smyth. “But this was all preventable, and regardless of any plan that is formulated, there are simply not the staff to carry out the assessments or, crucially, provide an intervention.”

Smyth says there is a lack of training places, particularly for counselling and educational psychologists, and the system of appointing people leads to delays and a lack of certainty for people who can secure higher paid work with less stressful conditions.

“Clinicians are burnt out. People are leaving child disability services and we are not training enough of the three professions to meet current or future demands. In 2021, the HSE carried out a review of what was needed for the next 10 years, but the 110 per cent increase in staff is not being planned for.”

In a statement, the HSE says it “acknowledges the challenges in meeting the demand for children’s disability services and is acutely conscious of how this impacts on children and their families”.

It says an additional 190 posts have been allocated this year to children's disability services in addition to the 185 posts in 2021 which it says will support the implementation of family centred services. In parallel, it says the recently published Department of Health waiting list action plan provides for funding to address community waiting lists for children.

The HSE says implementation of its new plan, Progressing Disability Services, will address inequities in service provision based on diagnosis, age group or geography.

It adds that it is engaging directly with families who had an preliminary team assessment – found to be unlawful by the courts – to establish if a further assessment is needed, and it acknowledges families who have scheduled appointments under the old system may need a further appointment.

Unmet needs: waiting lists in numbers
8,000: Number of children on speech and language waiting lists
9,000: Numbers waiting on psychology
18,000: Numbers waiting on occupational therapy
9%: Estimated number of assessments completed on time in 2019-20