West Cork carer says Respite Grant is being unfairly administered

A WEST CORK woman who was caring for her elderly parents has called on the government to include a provision in Budget 2016 to ensure that the Respite Care Grant is made on a pro rata basis.

Currently, this grant is awarded annually to carers by the Department of Social Protection. But to qualify, the carer must be caring for their loved-one on one particular day of the year, generally the first Thursday of June.

‘The Respite Care Grant is a crucial support for those who provide full-time care for loved ones at home. Carers work seven days a week, 365 days a year and the Respite Care Grant provides the carer with an opportunity for respite and a chance to improve their own health and well-being,’ Caroline Crowley told the Southern Star.

However, if before the first Thursday of June in any given year a loved-one’s health declines necessitating a move from the family home into long-term nursing home care, or if they pass away, the carer is then ineligible for the Respite Care Grant despite the care they have provided up until this time. Making the grant a pro rata payment will support carers and acknowledge their crucial work right up to the end of their care-giving at home.

‘I cared for my parents at home since November 2011 when they were both in their early 80s. By the Spring of 2012, I realized that I could not hold down a full-time job and provide the care that my parents now needed. So, with the advice and support of the Public Health Nurse and my family, I settled into my new full-time care role. Since then, the arrival of the Respite Care Grant each June has become a key support. By the fourth year of caring in 2015, the family was actively looking forward to and planning for the grant,’ Caroline said.

However, with the sudden deterioration of her father’s health and his need for round-the-clock care, the family began to struggle while trying to adjust to the ever-changing daily routine.

‘Dad now needed help with every aspect of his daily routine. Throughout the night, he needed care as he did not have the cognitive ability to understand that he could no longer get to the bathroom safely by himself or indeed even call us for help. Following weeks of little sleep, we installed a bedside motion detector to alert us when Dad was rising during the night so that we could help him in time. There was also the risk of him falling and hurting himself during the day so we got a baby monitor with a camera to keep an eye on him if he tried to leave his day chair. It was the toughest period of care-giving to date,’ Caroline continued.

Then, in May 2015, Caroline’s father had a seizure at home and required emergency hospitalization.

‘He lost his mobility entirely and this, combined with his rapidly declining cognitive condition, meant that home was no longer the safest or most comfortable place for Dad. We realised that he needed the kind of support that we could no longer provide, full-time nursing home care. While we also had Mam’s health and continued care to provide for, another dark cloud hung over us. We knew that if Dad entered long-term nursing home care before the rapidly approaching first Thursday of June, we would be ineligible for the Respite Care Grant; and how we needed that grant this year,’ Caroline said.

With almost 190,000 people identifying themselves as carers in the 2011 census, many having had to leave or forego full-time employment to ensure that their loved ones are cared for in their own homes, the Respite Care Grant is a very important support to already stretched family budgets. Regardless of financial circumstances, its primary role is to acknowledge the vital work of carers and to encourage them to take a break.

‘The latter stages of the care-giving phase are the times when the carer is in most need of the Respite Care Grant. The months leading up to Dad entering long-term nursing home care were the most stressful of our family’s care-giving experience. Yet, I was faced with the fact that in spite of caring for Dad for 360 days since the previous Respite Care Grant payment, I could now become ineligible. Why should one arbitrary date in the year determine eligibility and not the act of care-giving itself? Around the time that Dad was hospitalized, he had been scheduled for a week of respite in the same facility. Since a respite bed was available the following week, Dad was admitted to the respite unit on discharge from hospital. He then moved to long-term nursing home care the week after that, just a few days after the first Thursday in June. We received the Respite Care Grant,’ Caroline continued.

Caroline, a rural development researcher, has written a proposal which she hopes will be considered and implemented as part of Budget 2016.

‘Dad passed away three weeks after he moved to the nursing home, in the excellent care of staff and our local GPs, and we continue to care for mam at home.

Having experienced the stress caused by the poor design of the current Respite Care Grant, I feel that it is essential to make it a pro rata payment so that carers receive support and acknowledgement for their vital services right to the end of their care-giving when they need it most. I have submitted my recommendations in a paper to our local County Councillors, TDs and to Ministers Joan Burton (Lab) and Leo Varadkar (FG). Society and the government must recognise the importance of carers in our communities by ensuring that they receive the most appropriate supports both in terms of services and financially,’ Caroline Crowley concluded.