Family Carer and mother Johanne Powell made a lot of people sit up and take notice this week. I have known her for many years and know the round-the-clock care and attention she gives her daughter Siobhán. I see the toll this level of care takes on parents every day of the week. Not everyone may feel easy with Johanne's blunt description of life in her house, but how many could step into her shoes? Johanne has started a conversation that this country needs to have. And good on her.
Last week Family Carers Ireland held our annual Carer of the Year awards which recognises and celebrates the dedication and commitment of over 200,000 family carers across Ireland providing care for their loved ones. While it is important to value the work of family carers it is equally important to recognise the real challenges, frustrations and in some cases, tremendous burden that caring can and does bring. This can be particularly the case when it comes to caring for a child/adult with a profound disability as is evident in the recent article by Rosita Boland on the Powell family.
Every parent wants only the best for their children – they want to see them grow up, go to college, find a job, have a family of their own and go out into the world. A parent of a child with profound disability is denied that dream, as is their child: that is the stark reality.
Lifetime commitment
Caring for a child with profound disabilities is a lifetime commitment. Parents go through so many stages when they first receive that diagnosis, including shock, anger, disbelief, hurt, guilt and fear for the future and what it holds. At this stage it is so important that the family is supported both emotionally and practically with information and services. The reality is that this does not happen. Many families say that soon after discharge from hospital with their new baby a battle that lasts a lifetime begins. A battle for therapies, fighting for right to education, right to transport, right to financial supports and so on. They become their child’s advocate, their nurse, their occupational therapist, their physiotherapist, while also trying to remain their parent. Quite often they lose their identity as a parent and simply become a “carer”.
As a society how are we to treat family carers? What is the appropriate balance of responsibility between the person needing care, the family providing care and the State? Government stated policy is clearly in favour of greater support in the home, but carers’ experience is in stark contrast to this. Family carers are expected to fill all the gaps in an underfunded and under resourced system regardless of the cost to their physical and mental health.
Respite provision
A contributing factor here is that there is no statutory entitlement to home care support in Ireland and therefore it is discretionary and subject to limited funding. Furthermore, respite provision is fragmented, inadequate and non-existence in some cases. Research shows that lack of respite has an extremely negative impact on carers’ mental health and wellbeing. Recent Hiqa inspections have resulted in respite centres closing down, as they are “not fit for purpose”, but no alternatives are being offered to families using these vital services. While we welcome quality standards of care, we cannot stand by when no alternative solutions are being provided for these families. The broader context is that in the last five years we have seen cuts to vital supports and services to family carers, including a reduction of €11 million in the home care budget despite a 25 per cent increase in the older person population.
A huge fear for many families caring for children/adults with severe disabilities is the question of what will happen their loved one when they are no longer able to provide care or when they, the carer, passes away. There is no future care planning for these families. They are simply told that in the event of either parent’s death a residential setting will be provided. This is perhaps the greatest stress that these family carers face. In these situations what is required is a gradual, slow handover from home to an appropriate care setting where they can familiarise themselves with staff and surroundings. Ideally this would involve the family availing of such respite services over a period of years, including overnight, weekend and week residential breaks for their loved one with disabilities. This would allow for a far less stressful transition from home to residential care when the time comes and give parents and carers peace of mind that their loved ones will be well cared for in their absence.
Carers tend to be positive and proactive individuals who accentuate the positive, but as a result many find it easy to dismiss the toll caring takes. Johanne’s straight talking about her personal experience is a welcome antidote to this enabler of neglect by state and society.
Catherine Cox is head of communications at Family Carers Ireland