Parents of some children with complex disabilities are making the agonising decision to leave their children behind in hospitals, residential centres and special schools because they can’t access the adequate supports and services they need to care for them at home.
‘Nowhere to Turn’, a new report published today by the Ombudsman for Children’s Office (OCO), highlights the plight of some of these children, and how this failure by the State is impacting their right to grow up within their families.
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.
In ‘Nowhere to Turn’ we hear about Shane (14), who is non-verbal and has a severe intellectual disability and ASD, and spent eight weeks in hospital because he had nowhere else to go.
Shane had no medical need to be there, but without access to the appropriate supports, his family felt they could no longer manage his increasingly challenging behaviour at home.
Another teenager, Emma, who has a mild intellectual disability and ASD, 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.
In 2020, following the Ombudsman for Children’s Office investigation into the case of Jack, a little boy who acquired profound disabilities following a car accident, and was left in a hospital setting for over two years beyond medical need, the OCO made a number of recommendations to the HSE aimed at ensuring no other child would go through the same.
However despite accepting, and committing to taking these on, OCO say the HSE has ‘still failed to implement key strategic recommendations from the Jack investigation.’
These include developing an assessment process to determine the needs of the child, provide a specific support package for them, and ensure there is ring-fenced funding for these services. We also asked the HSE to ensure they have a range of placement options for medium and long term if children cannot return home.
Nearly three years on, the OCO continues to receive complaints from parents of children who, like Jack, due to a lack of strategic planning, are stuck in the wrong setting for too long or left without the right support.
Commenting on the Nowhere to Turn report, the Ombudsman for Children, Dr Niall Muldoon, said:
“These parents are at their wits end trying to access adequate supports and services for their children, and we can see the devastating impact this has on family life as a whole.
“A child’s right to grow up within their family is protected in the Constitution, the UN Convention on the Rights of the Child (UNCRC) and the UN Convention on the Rights of Persons with Disabilities (UNCRPD).
“However, 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. 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.
“We also need to see more consistent inter-agency cooperation between the HSE and Tusla to avoid situations like that of Emma in our report, who had to live in a respite centre for nearly a year when the HSE initially resisted efforts to work with Tusla to find her a suitable residential placement.
“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.
“While we wait for the detail of the proposed expansion of children’s services in the Government’s upcoming Disability Action Plan 2024-2026, it important that there is also an independent monitoring mechanism put in place to ensure these actions are implemented quickly.
“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’.”