This is an open letter to the current Irish Government regarding the in Loco Parentis rule as it pertains to in-home nursing respite care of disabled, medically complex children and their parent carers who are restricted from leaving the house during the time the nurse is present.
On 27 March 2018, there was a Private Members’ Business Motion on Disabilities in the Dail. Brought forward by Sinn Féin, the motion was unanimously agreed upon that evening by all political parties. Within the Motion was the call to abolish the in Loco Parentis rule. Since that Motion was agreed upon over a year ago, nothing has been done to abolish the rule which restricts parents from leaving their home while a respite nurse is in the house to provide respite.
The entire Motion proceedings in the Dail can be seen here starting at 6:10.00. The discussion about in Loco Parentis begins at 6:17.45. The debate transcript can be found here.
Here are just some of the comments from that Dail debate:
Deputy Caoimhghín Ó Caoláin – I also call on the Government to immediately abolish the in loco parentis clause in home care nursing contracts. The current requirement for the parent to remain in the home while clinical staff are in attendance, or to appoint another competent adult to attend in their absence, is causing significant and unnecessary stress for already stretched parents coping with the care needs of children with complex medical conditions. For whatever limited period that the parent could have to go about the ordinary out-of-home chores, to visit a shop, to call on a friend or to walk in the rain, surely the presence of a trained nurse or a qualified health care assistant offers the chance of a badly needed and well-deserved break. In these cases, where parents are providing 24-7 care to their very sick child, invariably faced with life-limiting conditions, any small respite is a godsend. We are talking about intervals of rest and relief that will help parents to face all that their child requires of them again. Why must we compound their already difficult days and nights? They are heroic. They are true bearers of pure love. Let us scrap the clause and show some little appreciation and kindness.
Deputy Pearse Doherty – I want to focus on one part of the motion, namely, the in loco parentis clause contained in the contracts for home-care packages for children with complex and life-limiting needs. This policy is shameful and uncaring and it mandates the families of sick children to stay in their homes during nursing visits. It has rendered home-care packages ineffective.
Deputy Margaret Murphy O’Mahony – How we look after and engage with people with disabilities is a hallmark of a caring and compassionate society, and in this House we must set a lead. Fianna Fáil will be supporting the motion.
Deputy Thomas Pringle – I echo the call in the motion for the removal of the in loco parentis clause in all contracts for home nursing care.
Deputy Mattie McGrath – On the so-called in loco parentis clause, I raised this issue with the Minister for Health, Deputy Harris, last November and I have also submitted several parliamentary questions on the matter but the HSE has refused to change its position. I ask the Minister to review this clause immediately as it is an excessively restrictive provision in the HSE home care day hours support system. At the launch of the Jack and Jill Children’s Foundation service evaluation report by Coventry University and Trinity College at the Royal College of Physicians of Ireland last November, we heard that the HSE in loco parentis rule is having a disproportionate and damaging impact on the families of the sickest children in this state.
(My own son, Brendan Bjorn, was mentioned that evening as part of the Motion, as I was fighting then, as I am still, for a home care respite package for him. I haven’t had in home respite since June 2017 and he has been bedridden/housebound the majority of these past 2 years.)
Minister for Health, Simon Harris, was not present in the Dail during this Motion. Minister of State at the Department of Health, Deputy Jim Daly, gave the response. Regarding the in Loco Parentis rule, he concluded by saying this: “The HSE is already looking at respite care as part of the national quality assurance process and this will help to inform a review of the operation of the loco parentis rule by the national steering group for children with complex medical conditions.”
My questions, which repeatedly go unanswered despite raising the issue of in Loco Parentis on 3 different radio programs last week and on the Claire Byrne Live tv show this week, are as follows:
- Why was in Loco Parentis not immediately abolished as part of the Motion on Disability 27 March 2018?
- Why has the report from the national steering group for children with complex medical conditions, as mentioned by Jim Daly TD on 27 March 2018, not yet been released?
- Why were there no parents of children with complex medical conditions included as part of the steering group?
- Why was in Loco Parentis implemented in the first place?
- If nurses are trusted (as rightly they should be) to care for children with complex medical needs in hospital without the parent or another adult there, why are they not trusted by the HSE to do the same in the home, especially considering the child is likely to be in better health at home than if they’ve reason to be in hospital?
- In some cases, such as with my own son, he would have both an HCA (home care assistant) and a nurse present together to provide in-home respite. I have asked that, considering there are TWO qualified staff together, could one of them qualify as the in Loco Parentis. This request has been refused. I ask, why?
Carers such as myself save the State over €10 billion per year by providing 24/7 in home care for our disabled loved ones.
The Government must begin to understand that if carers are driven to the point of no longer being able to care (which, by the way, many of us are at that point), it is the State who will ultimately end up paying a higher price in the way of residential care and increased healthcare costs for the carer’s own failing physical and/or mental health issues, as well as those of the siblings in the home who are having their own well-being adversely affected by being imprisoned in their own home by the in Loco Parentis rule.
The Government must begin to truly hear that they are systematically destroying families across Ireland with this policy – and with what is indeed an overall lack of wraparound support services and care for families with children who have disabilities and complex medical needs.
The Government must recognise that the well-being of carers and their families needs to be safeguarded by allowing them to leave their own home for the mere few hours per week that is to be respite and abolish the in Loco Parentis rule immediately.
If we can no longer do the job of caring because we have collapsed, or worse, from exhaustion, who will take our place?