Carers in Northern Ireland: Where are we with legislation and policy to support them?

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In advance of Carers Week, this is the first of two articles examing the contribution made by carers to supporting the formal care system. We look at the issues they face in undertaking the caring role for family members and friends. Legislative developments across the UK are discussed as well as issues relevant to carers and how these are being addressed in Northern Ireland and beyond. A fuller briefing paper on these issues has been published by RaISe.

A young carer
Image by Produnis under WikiMedia Commons

 

Carers and their contribution

Carers are people who provide ‘informal’, usually unpaid, care to someone with a long-lasting health or care need, outside a professional or formal employment framework.

This ‘informal care’ is often an ignored sector of the economy, yet it is thought that a staggering 80% of all care across the European Union (EU) is given by family and friends.

Even in countries with well-developed formal care systems, such as in the UK, the number of informal carers is estimated to be twice as large as the formal care workforce. Across the UK there are around 7 million ‘informal’ or family carers and almost 60% are women. The number is rising each year and the economic contribution is estimated at over £130bn per year.

Without these carers the formal care systems across the UK would be unsustainable. This ‘resource’ is, however, under pressure due to various demographic and socio-economic developments.

Informal carers ‘prop up’ the formal care system in most countries, but there is a knock-on consequence for the labour market and economy. Providing informal care can cause lower productivity from carers who are combining care with paid work. If the workplace is unsupportive, this can lead to time off for their own health problems.

Many people wish to be involved in caring for relatives, but if they are not adequately supported there are likely to be health and financial challenges facing them.

Around 218,000 people in Northern Ireland (NI) currently have some form of caring role. Department for Communities data shows that at February 2017:

  • The number of Carer’s Allowance claimants was 73, 020, a rise of 2,740 over the year; and
  • The number of Carer’s Allowance recipients was 46, 300 a rise of 2,090 over the year. Of these, 33% were male and 67% female.

Developments in law

The most recent specific legislation in NI was the Carers and Direct Payments Act (Northern Ireland) 2002, which gave carers the right to an assessment and to be considered for services to meet their assessed needs. Trusts retain discretion to decide whether or not to provide these service(s) to meet the identified needs.

In the rest of the UK, legislation for carers has recently been updated:

  • The Care Act 2014 and Children and Families Act 2014 in England;
  • The Social Services & Well-being (Wales) Act 2014; and
  • The Carers (Scotland) Act 2016.

From the carer’s perspective, a key advantage of the Care Act 2014 in England is that it places a duty on local authorities to provide the services required, within a national eligibility criteria. It has broadened the eligibility criteria for respite care to allow carers to engage in work, training, education, volunteering or recreation.

With regard to respite care, the Carers and Disabled Children Act 2000 (England) had already introduced the power for local authorities to offer carers short respite breaks.

The Carers (Scotland) Act 2016 (to be implemented on 1st April 2018), introduced a strong focus on young carers, with the intention that they should be able to have a childhood similar to peers without a caring role. It also requires local authorities to prepare carer strategies for their locality.

Important progressions in the Scottish Act are the replacement of the carer’s assessment with an ‘Adult Carer Support Plan’ and a ‘Young Carer Statement’ for young carers. It also introduces a duty to support carers whose needs cannot be met by general services (carer’s needs must meet local eligibility criteria in order for the duty to apply).

The Social Services & Well-being (Wales) Act 2014 is a wide-ranging Act bringing together the duties and functions of local authorities. The aim is to improve the well-being of people who need care and their carers, through a general duty on local authorities to promote the well-being of people ‘in need’ and their carers. It is thought that this will create a distinct social care legal jurisdiction in Wales.

The Welsh Act also places a duty on local authorities to promote the development of, for example, third sector organisations to provide ‘co-produced’ services. This is in contrast to the Care Act 2014 for England, where it is expected there will be a significant increase in privatisation of social care provision.

With regard to impact on carers from the range of new laws:

  • The Carers Trust found that 69% of carers, who responded to its survey one-year post-introduction of the Care Act 2014, had noticed no difference; and
  • With the Carers (Scotland) Act 2016 not yet implemented and early days for the Social Services & Well-being (Wales) Act 2014, evaluation of impact from those jurisdictions is likely some years away.

Tackling policy issues

NI is lagging behind the rest of the UK in addressing carers’ issues, in terms of both strategy and law development. Caring for Carers (2006) is the most recent NI strategy, whereas more recent strategies have been published in Scotland in 2010, in Wales in 2013, and in England in 2014.

Carers in NI have expressed concern that their issues are not being addressed including, the impact on their own physical and mental health; detriment to their own life outside of caring; difficulties in balancing caring with paid work often leading to financial difficulties (compounded by cutbacks in social provision and increases in direct costs); and for young carers – impact on development of social skills, family relationships, and education/career prospects.

In 2014, The NI Human Rights Commission (NIHRC) published its report into the Human Rights of Carers in NI. The NIHRC collated the human rights standards relevant to the needs of carers and made a series of recommendations towards ensuring an increased level of compliance. Some of the key recommendations included:

  • Giving specific consideration to the needs of older carers and child carers – for the latter to introduce a child carer assessment, educational initiatives and the creation of a statutory duty on educational bodies to support young and student carers;
  • NI Executive programmes aimed at alleviating poverty should take full account of the challenges faced by carers; and
  • Enhancement of legal protections for carers seeking the right to work.

The NI Department of Health is currently taking forward a three stage Reform of Adult Care and Support. Carers have been identified as a priority, including how to recognise and support them in their caring role. An Expert Advisory Panel is working with the Department to provide an independent perspective on possible solutions to meet the challenges facing the care and support system. The Department anticipates that proposals for change will be issued for consultation in 2017. It is acknowledged that legislation may be required.

Policies to support carers – three key strands for consideration

A review by the Organisation for Economic Co-operation and Development (OECD, 2011) highlighted that support policies for carers across the UK and OECD countries generally fall into three main categories:

1) Helping carers combine care responsibilities with paid work

The law for requesting flexible working hours and practices has improved in the UK, although it tends to be used more for care of children rather than the elderly, as carers are concerned it will impact on their career prospects.

Options for official paid ‘care leave’ are available in a number of countries, including Belgium and Scandinavian countries. In the UK, carers often use annual or sick leave to fulfil caring responsibilities. Carers UK have called for a statutory entitlement to ‘care leave’ in the UK.

2) Improving carers’ physical and mental health and wellbeing

The provision of flexible respite care is key to improving carers’ wellbeing. A range of different services is beneficial, including day-care services, at home respite and institutional respite.

In NI access to respite care is based on an assessment of needs by the HSC Trust. People being cared for may be eligible for care at a day centre, or 24-hour care in an institution for a number of days or weeks.

Policies across the EU generally include respite care, but legal entitlement varies. For example, in the Republic of Ireland, an annual grant for respite care can be used throughout the year.

3) Compensating and recognising carers

Many OECD countries provide financial support to carers through a ‘carer allowance’ and/or direct payments to those in need of care (or to carers based on an assessment of their needs). Both types of payments (allowance and direct payments) are available in NI and the rest of the UK.

In Nordic countries, municipalities employ family caregivers directly with varying salaries, but are not obliged by law to provide them. Such ‘care wages’ aim to keep the care recipient at home instead of having to move to an institution. Care ‘wages’ may seem promising but they are a relatively costly option and raise the question as to whether or not more qualified formal carers should be used instead.

Conclusion

Many OECD countries provide financial support to carers through a ‘carer allowance’ and/or direct payments to those in need of care (or to carers based on an assessment of their needs). Both types of payments (allowance and direct payments) are available in NI and the rest of the UK.

The evidence shows that compensating carers financially is an important way to recognise their contribution, but the benefits can only be maximised in the context of a holistic care plan for carers and those being cared for, which includes training for carers, flexible working arrangements and adequate respite care.

Later this week, we will publish another post on the subject of carers, looking at some of the statistics behind the issues.


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