A new rule that states parents of children with disabilities must be present with homecare nurses at all times should be abolished, a leading charity has warned.
The controversial rule requires a parent – or another adult – to be present at all times, alongside a healthcare professional.
The Jack and Jill Foundation has written to the Director General of the Health Service, Tony O'Brien, stating that the loco parentis rule "flies in the face" of the HSE's principles of care and compassion - and is causing unnecessary stress for struggling families.
The charity currently provides homecare nursing hours to 350 families across Ireland. Its liason nurse for the Cork Region, Eilin ni Mhurchu, told RTÉ Radio 1 Drivetime: "I don't understand the reasoning behind it. As with any parent that sends their child to school or creche there is a loco partentis within that and it is the same thing with a nurse looking after a child.
"We are asking the HSE to abolish the new rule completely. It is only adding to the burden of care for these families, it is not helpful. The HSE seems so far removed from the daily lives of these families and now they are putting in an additional hurdle in their way. They are not showing care or compassion."
The controversial #HSE clause that's "trapping" parents of kids with disabilities in their homes. I'll report on the in #locoparentis rule @drivetimerte @JackandJill1997 @HSELive pic.twitter.com/55PSEOqIZY
— John Cooke (@johncookeradio) March 20, 2018
But in a statement to RTÉ Radio 1 Drivetime, the HSE said: "Overall responsibility for the welfare of the child is that of the child's parents and service provision should work in tandem to support their role.
"Staff will not assume sole responsibility for a child where parents may not be available and a designated and competent individual (appointed by the parents) must be present to act in loco parentis."
Many families across the country are only becoming aware of the new requirement as their care contracts come up for renewal or when their sick children reach an age where they depend solely on the HSE or private nursing agencies appointed by the HSE.
Michelle and Declan Forde in Turners Cross, Co Cork, are currently dealing with the reality of the new ruling after their daughter Leah turns five meaning that he care they have been receiving from the Jack and Jill has come to an end.
Leah has a chromosome disorder leaves her unable to walk, sit up, talk, or feed normally. She is still in nappies and awaiting spinal surgery.
Michelle said: "If this loco partentis rule is enforced on us it will make me a prisoner in my own home because I have to be here all the time or another responsible adult to be here with Leah. This rule will change everything for us.
"I don't have someone else, my husband works I work part-time to pay the mortgage, there is no one to come in and stand in place. I can't sign a new contract that says a responsible adult needs to be here with Leah.
"I am not sure what is going to happen. I would say to them to come to our house and see how it impacts us."
In its statement the HSE added: "When providing a homecare package clinical staff cannot assume sole responsibility for a child in the child's own home. Where parents may not be available, a designated and competent individual (appointed by the parents) should be present to act in loco parentis, as is the case with all children.
"Parents do not necessarily have to be at home themselves however they should identify an appropriate adult to act in loco parentis when they are absent from the home."
Drivetime reporter John Cooke also spoke to other families who have been clinically approved for a homecare nurse or healthcare assistant but have recently found out that this nurse cannot be left alone or unaccompanied with their child anymore.
You can listen to part one of the report below:
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Read full HSE statement is below:
"Children with Complex Healthcare medical conditions have substantial medical healthcare needs and a home care package is required when a child has medical and/or nursing needs that cannot be met by existing Primary Care services and Children's Disability services.
The HSE responsibility is to facilitate the child to lead as normal a life as possible in order to maximise child quality of life and developmental opportunities and to keep the child out of hospital as much as possible.
Overall responsibility for the welfare of the child is that of the child's parent/s and service provision should work in tandem to support their role. Staff will not assume sole responsibility for a child where parents may not be available and a designated and competent individual (appointed by the parents) must be present to act in loco parentis.
The Nurses/Health Care Assistants are recruited by the service providers including the HSE and not by the parents. The staff are responsible for the clinical care of the child. The requirement for the nominated person is to have a second person present in the event of an acute emergency such as respiratory arrest, decanuation of a tracheostomy or status epileptus. Parents should not be told that they have to be there with the child and nurse at all times, however, should be advised that they must find identify an appropriate adult to act in loco parentis as any other parent would.
The HSE has recognised that respite is an issue for some of these families and, as part of the National Quality Assurance Process, has included 14 questions on Respite and following completion of the process a submission will be made for the Estimates Process in 2018. Currently funding levels ensure a home care package is in place to facilitate timely discharge from hospital and the sustainable nursing/HCA care of the child within the home.
When the National Quality Assurance process is complete and the findings of the respite questions collated the National Steering Group for children with complex medical conditions will review the issue of 'Loco Parentis' prior to the publication of the new policy and practice documents in 2018.
The HSE is committed to adopting an integrated approach to providing care for children with complex medical conditions in the community setting that is centred on the needs of the child and their family. This involves working collaboratively with parents, public health nursing and health service managers to provide child centred home care service that ensures that all available resources are utilised to provide integrated care that is coordinated effectively within and between services for children with complex healthcare needs in the community (HIQUA, 2012).
When providing a homecare package clinical staff cannot assume sole responsibility for a child in the child's own home. Where parents may not be available, a designated and competent individual (appointed by the parents) should be present to act in loco parentis, as is the case with all children. Parents do not necessarily have to be at home themselves however they should identify an appropriate adult to act in loco parentis when they are absent from the home."
