The Ombudsman for Children's Office (OCO) has expressed concern over the exclusion of children from proposed regulations for home support services.
It called for their inclusion in draft regulations which are being finalised by the Department of Health.
There are over 650 children with complex needs in receipt of the services in their family home, according to the OCO.
In a report, it cites the case of Baby Luke, who was born with complex healthcare needs, resulting in him needing a tracheostomy, two cardiac surgeries and a pacemaker.
He spent the first year of his life in Children's Health Ireland at Crumlin.
A private provider was contracted by the Health Service Executive to provide Luke with a home care nursing support package of 70 nighttime hours and 18 hours during the day.
However, the provider was unable to fulfil the contracted hours from Friday to Sunday, which meant that despite being medically fit for discharge, The baby had to spend the weekends in hospital from August 2022.
His father said there were multiple occasions on weekdays each month where cover could not be sourced for a care shift and where communication from the agency was limited and at very short notice.
On 10 January 2023, an overnight nurse caring for Luke allegedly fell asleep during their shift which was reported to the private service provider by the baby's father who expressed grave concerns.
Three days later, he was told that Luke’s contract with the provider had been terminated.
He submitted a formal complaint to the provider about the resourcing of the contract, the cessation of the contract on foot of raising concerns to the agency and the alleged incident.
An initial acknowledgement and commitment to investigate it was received on 24 January, but he received no further contact about the complaint.
Six months later he submitted a Freedom of Information request to the service and, as part of the materials provided, received an undated 'Complaint Report’.
HSE acknowledges 'shortcomings' in care package
The OCO undertook a preliminary examination of both the private service provider and the HSE to identify if any administrative actions or inactions had occurred which may have adversely impacted on Luke.
It found that the HSE did not progress an agreement with the private service provider for the home care package.
When the OCO requested a copy of the agreement, a blank, draft version was provided which the office described as "hugely concerning".
The HSE acknowledged there were shortcomings in how Luke’s care package was managed and resourced, including a lack of oversight of complaint management with the private provider.
Local HSE management agreed to meet the baby’s family and has since provided a verbal and written apology.
A number of actions, including the appointment of a HSE lead to meet families and private providers for issues that may need to be resolved, have been implemented.
Baby Luke is supported by a home care package with a different provider and the Community Healthcare Organisation (CHO) continues to manage the care, with ongoing communication with his family.
The OCO has used the case to highlight the need for children to be included within the regulatory framework being finalised by the Department of Health.
Failing this, it has recommended that the departments of health and children develop a standalone plan that will provide independent oversight of home care and support services provided to children.
OCO Director of Investigations Dr Nuala Ward said the case showed the vital importance of robust oversight of services "so families can be assured that their children, who are among the most vulnerable, are being provided with consistent, high quality and safe care".
Dr Ward said there was "still time" for Minister for Health Jennifer Carroll MacNeill to include children in the draft regulations by introducing an amendment in the Government's spring legislative programme.
"It is simply wrong that HIQA’s new oversight role of these services excludes these children," she said.
