Parents of children with a disability are asking for the 'in loco parentis' rule set by the HSE to be abolished.
Parents of children with a disability are asking for the 'in loco parentis' rule set by the HSE to be abolished.
Under the rule, parents of children with a disability, who are in receipt of a home care package, cannot leave their child at home with just a nurse - there needs to be another adult present.
This means that parents don’t get a chance to spend time with their other children or do normal things like pop to the shop to pick up some groceries.
According to David Walsh, head of operations primary care at the HSE, Paediatric Home Care Packages “are in place to support the discharge of seriously ill children from acute hospital into the care of the families”.
PHCP is “intended as a clinical support” and “is in place to ensure that a second person will be present in the event of an acute emergency such as respiratory arrest, decanuation of a tracheostomy or status epileptus.”
However, the rule is affecting the lives of families all across Ireland.
On her show Claire Byrne Live, Claire Byrne spoke to a number of parents affected by the rule, who highlighted just exactly how it impacts them and their other children day to day.
Parents of disabled children: HSE makes us prisoners in our own homesThe parents of disabled children discuss the HSE's "in loco parentis" rule which means they can't leave their own homes even though nurses are in the house #cblive pic.twitter.com/69fkxSkmj1
— RTÉ ClaireByrneLive (@ClaireByrneLive) May 13, 2019
Linda Cummingford, from Kilkenny, receives home support hours for two of her children, Michael and Shona. Five hours go to Michael, who has Cerebral Palsy, is deaf and also partially sighted, and two and a half hours go to Shona, who has autism and suspected ADHD.
Speaking in a video shared on the show, Linda explained that the "in loco parentis" rule “creates barriers for families”.
Normally, when a nurse is in the home, parents are given a chance to spend time with their other children or even do things like go for a cup of tea with a friend or get their hair cut.
However, because parents now must be in the home when the nurse is there, Linda says the rule “prevents families from re-charging their batteries.”
And she’s not the only one.
Tracey from AddressingLife, who is mum to Brendan, says that she is fighting the rule because it is not respite.
Parents need to be able to get out not only for themselves but for their other children, she said. "Otherwise we’re all just trapped in our homes."
The clip was shared on Twitter where it received a number of comments from parents also affected by the rule.
Thank you for listening to us Claire and giving us a platform x— Daisy Mc Donald (@daisysdays0213) May 13, 2019
@ClaireByrneLive @SimonHarrisTD @HSELive @NiallCollinsTD Thank you to the Claire Byrne show for highlighting this issue. Families with children with complex medical needs are at breaking point, we need a break, we need to be able to leave the house. Abolish In loco parentis rule— Lorraine Tierney (@darrira) May 14, 2019
Who brought in such a debilitating rule for parents 'in Lo co paraentis' : I take it to mean ' in place of the parent' that if a parent is absent there's a HSE nurse insitu to act in the parents absence. This needs to be ammended immediately for the sake of invisible carers !— Gregory Toal (@GregoryToal) May 14, 2019
Written by Mary Byrne, Content Executive at Family Friendly HQ. Follow her on Twitter: @marybyrne321
