Call for monitoring mechanism to hold State to account

Niall Muldoon said that Children’s Minister Roderic O’Gorman and Disabilities Minister Anne Rabbitte should set up an independent monitoring mechanism. Picture: Maxwells.

An independent monitoring mechanism should be put in place to hold the State to account for supporting children with complex disabilities, according to the Ombudsman for Children.

In a report published on Monday, Niall Muldoon said that Children’s Minister Roderic O’Gorman and Disabilities Minister Anne Rabbitte should set up an independent monitoring mechanism alongside the forthcoming Disability Action Plan 2024-2026 to hold the State to account for their support of these children.

The Disability Action Plan is expected to be published shortly.

The report from the Office of the Ombudsman for Children said: “The expectation is that it will have key priorities including actions to increase capacity of the Children’s Disability Network Teams, increased home support hours, increasing capacity for planned residential placements, and expansion of respite provision.

“The independent oversight monitoring mechanism that we are proposing should measure progress against the actions and timelines of the Disability Plan, flag any concerns to the relevant ministers, and publish independent reports.

“There have been simply too many plans and not enough action. These children deserve better.”

The recommendation was made in the Nowhere to Turn report which said parents are being left with no option but to leave children with complex disabilities in hospital or other residential care settings “because they can’t access the adequate supports and services they need to care for them at home”.

“These children can then remain in these inappropriate setting for weeks, even months, due to the failure by the HSE to ensure an adequate range of placement options if they cannot return home,” the report stated.

It references the case of a 14-year-old, Shane, who is non-verbal, has ASD, and a severe intellectual disability. He “spent eight weeks in hospital because he had nowhere else to go”.

The report said Shane had no medical need to be in hospital “but without access to the appropriate supports, his family felt they could no longer manage his increasingly challenging behaviour at home”.

It also highlighted the case of another teenager, Emma, who has a mild intellectual disability and ASD.

She lived 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”.

Mr Muldoon said: “It is clear that much greater commitment and investment is needed from Government to address the issues raised in our report.

“Families need to be fully resourced and supported to take care of their children at home and shouldn’t have to fight to receive critical respite services.

“Recent reports of long waiting lists for respite services are piling more pressure on parents, and we know from the latest Health Research Board figures that there are more than 1,300 children and adults in need of overnight respite.

“No other disabled child should ever end up, unnecessarily, in a hospital bed like Shane in our report, a situation described by staff as the ‘wrong place, wrong time, wrong care’.”

Mr Muldoon also recommended a national review of the current need for alternative care for children with disabilities to be undertaken in cases where parents or carers are assessed as being either not willing, or not able, to provide for their ongoing care. This review must include children placed in inappropriate settings such as hospitals and respite centres, he said.