A REPORT RELEASED by the Ombudsman for Children’s Office (OCO) has found that children with complex disabilities are spending months in inappropriate settings because they are unable to access adequate supports at home.
Nowhere to Turn, published today, states that parents are having to leave their children in hospital Emergency Departments without medical need, and in residential centres and special schools due to a lack of placement alternatives for home care.
It says the “failure of the State” to provide adequate services to support children with disabilities has resulted in them being denied the opportunity to grow up at home with their families.
The report comes three years after Jack’s Case, an investigation into 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 said that despite making a number of recommendations to the HSE “aimed at ensuring no other child would go through the same”, the HSE has “still failed to implement key strategic recommendations from the Jack investigation”.
“We are deeply concerned that since our investigation into Jack’s case was first published in 2020 we continue to get complaints about the on-going failure of the State to provide adequate services to support children with disabilities to grow up at home with their families,” the OCO says.
“We have received a number of complaints concerning children with complex disabilities whose parents are struggling to cope with their needs. They have requested support from the HSE, but that help and support has not been forthcoming.”
In Nowhere to Turn, children and their families, medical professionals, special schools and residential centres spoke to the OCO about the impact the lack of appropriate support is having on children with disabilities.
The report details how Shane, a 14-year-old boy who is non-verbal and has a severe intellectual disability and autism spectrum disorder (ASD), spent eight weeks in hospital despite having no medical need to be there before the HSE Disability Services found him a long-term residential placement.
The case of another teenager, Emma, who has a mild intellectual disability and ASD, was brought to the attention of the OCO by a manager at a respite centre.
Emma lived at the respite centre for nine months, the report states. “This manager told us that Emma returning home was the only option considered by the HSE and that they struggled to convince them to consider alternatives.”
The report states that the HSE “resisted efforts by Tusla to work together on all of Emma’s needs and questioned their assessment”.
“They also refused to consider co-funding and resourcing a placement for Emma.”
It states that the OCO has received complaints from medical staff in hospitals describing the “significant negative impact” of prolonged hospital stays on children beyond medical need.
This includes anxiety and heightened behaviours; social isolation from wider family and friends; exclusion from school; distress at returning to hospital from a day centre and hospital-acquired infections.
One hospital group said it did not believe the HSE/Tusla protocol is working as it has “no teeth or resources assigned to it”.
In the most extreme examples, the group told the OCO about three children who spent 368, 205 and 107 days respectively, in hospital when they didn’t need to be there.
The report details how local disabilities managers told the OCO that in some areas, the HSE “does not see it as its role to provide residential care to children” and that there is still “conflict/no agreement between it and Tusla” over which agency should fund these placements.
Some managers said they would love to be able to properly plan a child’s placement but there is no funding available “unless there is a crisis”, while one manager felt that the HSE was “in denial” about the issue and the increasing number of parents who say they cannot cope and refuse to take their child home.
The OCO has called on the Government to fully implement the outstanding recommendations from Jack’s case.
This includes the development of an assessment process to determine the needs of the child and then provide a specific support package to address the identified issues, and to ensure there are a sufficient range of appropriate services and ring fenced-funding to support the right of children with disabilities to grow up at home with their families.
The report also recommends that a national review of the current need for alternative care for children with disabilities whose parents or carers are assessed as being either not willing or unable to provide ongoing care is undertaken.
It also recommends independent monitoring of the Government’s upcoming Disability Action Plan to ensure a clear timeline for the delivery of outlined supports and services.
Commenting on the report, the Ombudsman for Children Dr Niall Muldoon, said parents were “at their wits end trying to access adequate supports and services for their children”.
“A child’s right to grow up within their family is protected in the Constitution, the UN Convention on the Rights of the Child and the UN Convention on the Rights of Persons with Disabilities,” he said.
“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.”
Muldoon called for more consistent inter-agency cooperation between the HSE and Tusla and said it was clear that much greater commitment and investment was needed from the Government to address the issues raised in the report.
“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,” he continued.
“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’.”
Acknowledging the findings of the report, the HSE said it is “absolutely committed” to prioritising the needs of children with disabilities and improving the services provided to them and their families.
“The HSE CEO Bernard Gloster has recently met with the Ombudsman for Children Dr Niall Muldoon to discuss the challenges experienced by those requiring disability services, and in particular children and their families,” it said in a statement.
“The CEO will continue to work to improve the services provided to people with disabilities and welcomes his support.”
Commenting on the report, the HSE’s chief operations officer Damien McCallion said: “We accept that on occasion, families find themselves in intolerable positions, especially in circumstances where they feel they have no alternative other than to use acute services, believing it to be the only option available to them.
“While the HSE makes every effort to respond to the needs of children and young people as quickly as possible, we deeply regret that delays arise as many of our specialist services are dependent on the availability of suitable services, staff, and appropriate housing,” he said.
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