John Halligan (Waterford, Independent) | Oireachtas source

I move:

That Dáil Éireann:

recognises:— the vital contribution carers make to the economic and social life of the nation, and further acknowledges this by providing them with adequate income supports;

— that carers are real and equal partners in the provision of care at every level of public sector planning and service delivery, from designing a service to individual care planning;

— that carers are the backbone of the Irish health care system;

— that although family carers in the majority of cases are on call 24 hours per day and 365 days per year, they do not earn the national minimum wage and are not entitled to, inter alia, sick pay or holiday pay as are equivalent PAYE workers;

— that family carers provide €4 billion worth of care each year, which is five times the actual cost to the Department of Social Protection;

— that carer's allowance is a direct support for caring duties; and

— the home as the centre of care and the need to protect the household benefits package and free travel pass;acknowledges:— that full-time family carers are expert care partners and as such should be treated with the dignity and respect they deserve;

— carers’ rights to have their own health needs met;

— that transitional arrangements need to be put in place to facilitate long-term carers successfully re-entering the work force;

— the necessity to ring-fence funding for the housing adaptation grant scheme to ease the burden on local authorities who have had to suspend schemes in their areas; and

— the need for a nationwide personal care traineeship scheme using existing labour to be developed as an additional basis for home help support; andcalls on the Government to:— immediately reverse the cut announced in budget 2013 which will reduce the amount of the respite care grant;

— make provisions from within the special delivery unit budget allocation to incorporate carer induction training and needs assessment prior to a patient being discharged;

— eliminate the current backlog of carer's allowance applications by early 2013;

— provide free general practitioner care to full-time family carers;

— conduct a detailed review of the income supports available to family carers and engage agencies such as the Carers Association to provide their expert opinion;

— establish a working group to properly identify the needs of carers, including any unmet needs, to gather information about policies, practices and services that affect carers and to set out an integrated strategy for future action;

— establish a statutory entitlement for family carers and people in care to avail of care supports provided by community based services;

— pay carers such statutory entitlements as the national minimum wage, sick pay and holiday pay; and

— ensure that the relevant Departments draw up and put in place a programme of work to promote the adoption of good practice in carer-friendly employment.”

I will be sharing time with a number of speakers, as the Leas-Cheann Comhairle knows. Family carers play a vital role in the community which often goes unrecognised and inadequately supported. They ask for little and get even less in return. These people are responsible for care worth a massive €4.5 billion in care each year, which is five times the cost to the Department of Social Protection and equivalent to one third of the total annual cost of the HSE.

Based on figures from the 2011 census over 187,000 people in the country identify themselves as carers, with 21% of family carers providing over 43 hours of care per week. When it comes to official Government policy, they are viewed not as a resource but instead as a cost and treated as little more than a modern-day slaves. While the Government sits and halves our envelope allowance and gallantly protects senior civil servant and ministerial pensions of over €100,000 a year, some of these people are receiving the equivalent of one cent per hour from the State for the care being provided 24 hours a day, seven days a week. Carers are the only full-time social welfare recipients in the country who work for their payments. I imagine they are the only workers in the country who are openly employed in direct contravention to the Organisation of Working Time Act 1997, which states that the maximum average working week for employees cannot exceed 48 hours.

I know carers, as many would, and these people go around in a permanent state of exhaustion. I was in a house yesterday and the carer in it has a working day starting at 6 a.m. and ending at approximately 1.30 a.m. She does her work seven days a week on her own, looking after a child who has substantial and hourly needs, without earning the national minimum wage, sick pay or holiday pay as per the equivalent PAYE worker. There is no civilised society in the world where this type of modern slave labour should be tolerated. To compound this, the number of people forced onto waiting lists for the carers' allowance has almost trebled since the coalition came to power, with the latest figures indicating that at the start of this month, almost 9,000 people were told to queue for the allowance compared to 7,765 at the start of this year and 3,769 in the weeks before the election in 2011.

The target time for approval is 12 weeks but the current reality is that it can take up to two years, often leaving the carer without any alternative source of income. Almost half of those currently waiting have seen their basic weekly allowance delayed for over six months and yet they will continue in their caring role to their loved one while awaiting a decision. The Government knows it can continue to take advantage of this emotional umbilical cord and this kind of knowing exploitation would not be tolerated in any other profession.

Overall, family carers receive approximately €800 million from the social protection budget and save the health budget approximately €4.5 billion annually. Despite this, the average cut in income support for carers is more than twice the average cut in income support to all other recipients of social protection payments. When we make carers less well-off, we are not just worsening the lives of carers as it will have an impact on the lives of the sick and disabled people being cared for. How can this nation, its Government and we as politicians continue to claim we protect the vulnerable?

Following the budget two weeks ago, many of us spoke to carers outside Leinster House who were not only angry but also very hurt at the savage cut to the respite care grant. They told us that grant is soon eaten up by the costs associated with having a disabled child, for example. This payment was supposed to be in lieu of residential services to relieve those providing round the clock care to loved ones. Many families ended up using it because the State services to look after their loved ones were inadequate, and we have come across this complaint every day of the week. According to carers groups, using the money to fund respite care for a loved one is now at risk of becoming a luxury in itself, as more and more people use the grant simply to cope with their day-to-day financial expenses.

Parents of children with autism are paying out much more money than is coming in from the Government. I know the case of an autistic child in Waterford whose family reckons it will be down approximately €1,500 per year between the cuts to the respite grant, child benefit and the household benefits package. It is a substantial loss for carers. Even if respite care was affordable, it is not always available. At the same time as the respite grant is being cut, the HSE is engaged in drastic cutbacks to direct respite services throughout the country. Reductions in front-line services have already resulted in a €64 reduction in welfare payments to carers, with 23% of carers stating that the overburden of caring has led to their own physical disability. Many doctors throughout the country can confirm that. All of this is against a backdrop of housing adaptation grants almost being suspended, with increases in the costs of care in the home pushing many carers over the edge.

I have come to the conclusion that it is far easier to get €800 from the State for nursing home care than it is to get €100 for a carer in the home. I am increasingly coming in contact with families left with no choice but to place a loved one in residential care prematurely, when home help, day care or respite services are withdrawn, reduced or not provided at all. The Government needs to clarify home care entitlements without delay, similar to the way it has done for the statutory provision of fair deal. Carers ask for this continuously.

The high level care being routinely administered in so many homes brings substantial additional pressures on the household budget with increased energy and fuel cost, often requiring the transfer of patients across care settings, which adds to transport costs. There are other costs on top that again, such as the kind that come with having a profoundly autistic child; this can include the cost of cleaning walls; repairing or replacing household goods that have been smashed; and regular visits to the doctor for illness or injuries, self-inflicted or otherwise. Cutting the household package is a poor reflection of the Government's appreciation of the role of family carers.

The absence within the Government of any knowledge of the real cost of disability to inform budget decisions means families of people with disabilities are feeling increasingly alienated. One carer told me, "You cannot imagine it, you cannot understand it and you do not get it if you have not done it". I will speak more about that carer tomorrow night. Not only does the Government need to recognise the contribution of carers, but it should also realise the knowledge they hold about their profession.

Carers must be embraced as equal partners in the provision of care at every level of public sector planning and service delivery, from designing a service to individual care planning. This is not currently the case. Carer induction training would significantly improve the plight of a family expected to cope with the challenge of caring at home for a loved one who has a stroke or experiences other severe problems.

Repeated studies have highlighted high levels of depression, stress and anxiety among the nation's carers, a significant percentage of whom are aged more than 70 years. Legislation providing for the phased introduction of free general practitioner, GP, care is due before the Oireachtas shortly, with the first phase providing for the extension of these services to persons with illnesses or disabilities, as promised in budget 2012. There is an onus on the Government to include full-time carers in the next phase of the roll-out of free general practitioner services.

I would say much more on this issue if I had time. I will conclude, however, by making an observation. Carers are human beings who need to be cherished and cared for by the State. No one else is in a position to do this. Carers are probably the most highly thought of group in the country and they are the most heroic workers in any service. I ask the Minister of State to consider carefully this pragmatic motion which is not in any sense controversial. We do not propose measures that would result in all hell breaking lose in terms of the budget figures. I ask the Minister of State to read the motion and show compassion and I urge the Government to move beyond political expediency and examine it on its merits.

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