Boy with severe disability spent weeks in hospital ‘because he had nowhere else to go’

A non-verbal teenage boy with a severe intellectual disability spent eight weeks in hospital despite having no medical need “because he had nowhere else to go”, a new study has found.

Ombudsman for Children Dr Niall Muldoon said parents were “at their wits end” trying to gain access to adequate supports and services. He called for action from the Health Service Executive, child and family agency Tusla, the Department of Health and the Department of Children, including a national review of the need for alternative care in such cases.

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The ombudsman’s Nowhere to Turn report highlights deficiencies in State care for children with complex conditions and tells the story of Shane, a 14-year-old boy with autism spectrum disorder in addition to his intellectual disability and non-verbal condition.

The report said Shane was taken to hospital by his parents for his own safety, as they saw it: “They could no longer safely manage his extremely challenging behaviour at home and were very fearful that he would seriously harm himself or someone else.”

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The boy had no medical needs that warranted hospital care, the report stated. “His parents told us that this was the second time they took Shane to their local hospital because, despite the increase in respite provided by the HSE, it was simply not enough to help keep him at home with them.”

He remained in hospital for eight weeks before HSE Disability Services found him a long-term residential placement.

“Nursing management in the hospital contacted us after he was there for four weeks as they were very worried about his wellbeing. They struggled to care for him due to his challenging behaviour and the risks he posed to himself and to others,” the report said.

“He assaulted staff members and was cared for in a single hospital room where they had to secure the windows in case he hurt himself. From time to time, they had to revert to the extreme option of sedating him.”

Shane’s case had an impact on the care of other critically ill children and their families in the hospital, the report stated.

“Nursing management expressed their deep frustration that not enough was done by HSE disability services at an early stage to prevent Shane’s behaviour escalating and that he ended up in a hospital bed, which they described as the ‘wrong place, wrong time, wrong care’.”

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The report said the State’s failure to provide adequate care in such cases had an impact on the right of children to grow up within their families.

The latest study comes three years after a similar study highlighting the case of Jack, who acquired profound disabilities after a car incident, spent more than two years in hospital beyond medical need.

Although recommendations were issued to the HSE to ensure no other child had the same experience, the ombudsman said the HSE failed to fully implement the findings despite accepting them.

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“While Jack is now doing well, the failure of the HSE to fully implement our recommendations means that other children and their families are still not receiving the appropriate supports and services they need,” Dr Muldoon said.

“In the most extreme cases hospital staff told us about three children who spent 368, 205 and 107 days respectively in hospital when they didn’t need to be there.”

The new report also set out the case of a teenage girl, Emma, who has a mild intellectual disability and high-functioning autism spectrum disorder.

She had to live in a respite centre for nine months after her parents struggled for years to access the right services to help them safely take care of her at home.

“Her parents said Emma changed from being shy and withdrawn to very anxious, distressed and, at times, aggressive. They said that they struggled to manage Emma’s violent outbursts which were directed at both herself and her family.”