Title: Age NI’s Response to Who Cares?
The Future of Adult Care and
Support in Northern Ireland:
A Discussion Document
March 2013
Judith Cross
Strategic Policy Advisor (Health & Social Care)
Age NI
3 Lower Crescent
Belfast
BT7 1NR
t: 028 90892617
e: judith.cross@ageni.org
1
Key Proposals for Social Care Reform
Overarching
Age NI strongly advises that the fundamental building blocks of reform including
primary legislation covering all areas - statutory framework on entitlements,
assessments, quality and outcomes etc; legal reform of social care law including
safeguarding; and funding must be put in place. This must not be solely about
funding. It is vital that these measures run in parallel to form a comprehensive
package of reform.
Benevolent Prejudice: Ageism
Age NI is proposing that the concept of benevolent prejudice and ageism is
understood and tackled to ensure that older people realise the benefit of a rights
based model of social care.
Law Reform for Adult Social Care in Northern Ireland
Age NI is proposing that the legal framework is reformed alongside and parallel to
the developments on policy and funding.
Statutory and Legislative Provisions for Health and Social Care
Age NI is proposing that a review on age discrimination in health and social care is
carried out in Northern Ireland, led by the DHSSPS.
Age NI is proposing that Section 75 is embedded in all aspects of health and social
care, and specifically the social care reform process.
Age NI is proposing that a thorough review of human rights standards is undertaken
as part of the reform of social care to ensure the underpinning of social care policy,
practice and regulation by human rights standards and law
Older People, Prevention and Social Care
Age NI is proposing that in the first instance the Ministerial Priorities for Action reflect
targets and measures for social care preventative measures including technology
which could become a key driver for delivering low level preventative services.
Furthermore, we are proposing that the DHSSPS develop an overarching strategic
prevention strategy for older people.
2
Carers
Age NI is proposing that assessments are undertaken as if there is no carer in place
and that carers are fully supported to carry out their role and.
Supported Housing
Age NI is proposing that consideration is given to looking at the possibility of
incorporating the function of supported housing within the DHSSPS.
Workforce Planning
Age NI is proposing that a strategic overview of workforce planning is undertaken
immediately.
Role of the Voluntary and Community Sector
Age NI is proposing that infrastructural support to the voluntary and community
sector is specifically considered as part of the reform process.
Balance of Responsibility
Age NI is proposing that the funding framework must be compatible with the review
of social care legislation, and other policy initiatives such as eligibility/assessment
criteria and meet equality and human rights standards.
Attendance Allowance and Disability Allowance
Age NI in conjunction with our partner organisation Age UK, would only support
changes to the disability benefits system with firm guarantees about eligibility set
down in law and if it was clear that the reach and level of support of the improved
system would be as wide as it is now.
Implications of the ‘Dilnot’ Proposals in NI
Age NI is proposing that the DHSSPS consider the implications of the cap and rise in
the means-test for Northern Ireland
3
Contents
Case Study: Meals Service
5
Introduction
6
Age NI’s Response on Who Cares
6
Context
7
Age NI’s Vision
8
Age NI’s Tests for Reform
9
Age NI / DHSSPS Joint Events
10
Dispelling the Myths of Ageing
11
Current Model of Social Care
12
Current Evidence
14
Essential Components for the Reform of Social Care:
Benevolent Prejudice
16
Law Reform for Adult Social Care
16
Statutory and Legislation Provisions
19
Older People, Prevention and Social Care
21
Carers
24
Workforce Planning
25
Role of the Voluntary and Community Sector
26
Balance of Responsibility
29
Attendance Allowance and
Disability Living Allowance
31
Implications of ‘Dilnot’
35
Conclusions
36
4
Case Study: Meals Service
Meals Service : Problems and Potential
We are using this example to illustrate how the social care system is broken. The
use of meals on wheels to help maintain people in their own homes is a valid one,
however when you look beneath the surface a different story emerges.
Eating food for purely nutritional needs is necessary for us all. However, what we eat
and how we eat is linked into the social, economic and cultural aspects of our lives.
We know that the maintenance of social links has a positive influence on older
people’s mental and physical health. Meals-on-wheels services play a vital role in
providing social contact to clients, and can support people to feel a connection to
their communities and to remain living independently at home.
Eating is more than nutritional value alone and the social aspect of eating gets lost in
the provision of a meal in a plastic microwaveable carton, seven days per week. Is
this what we envisaged when meals provision was started?
Participants from our joint sessions with the DHSSPS talked of how care workers
were not allowed to cook for the older person. In many instances, they simply reheated the food and put it on a plate. One woman spoke about her neighbour who,
‘simply wanted a fried egg for her tea’ but the care worker refused as she was not
allowed to cook. Another related the situation of an older person who had had the
same type of sandwiches for over 3 years. A change in carer resulted in soup
instead and this was the highlight of his day!
Meals on wheels are usually related to an inability to shop and to cook meals, due to
incapacity, cognitive decline and disability. There are innovative measures that
Trusts can promote such as a Home Shopping Service, luncheon clubs, cooking
circles etc. For those who do not know how to cook, particularly recently bereaved
men, the role of day services in providing cookery classes should be examined as
this would have a duel function of combating isolation and nutrition.
We need to ask ourselves what would we expect – would you like to eat like this
seven days a week!
5
Age NI’s Response to Who Cares? The Future of Adult Care and Support in
Northern Ireland: A Discussion Document
Introduction
Age NI touched the lives of over 42,000 older people last year through its advice and
advocacy service, as a care provider and through its policy and engagement work.
We work in partnership with 11 Sub-Regional Networks, who represent over 2,000
older peoples groups, reaching almost 70,000 older people across Northern Ireland.
This gives us a strong mandate to represent the voices and experiences of older
people.
Age NI in partnership with the DHSSPS engaged with over 240 older on Who
Cares?, in February to great effect. These events enabled the voice of older people
to be central to Who Cares? Using our Peer Facilitator model – where trained older
people facilitate discussions – we gathered significant information on older people’s
experiences of care and support. In many instances, this was due to direct
experience as service users, as carers and those who provide early prevention
measures within their local communities.
Age NI welcomes the opportunity to respond to Who Cares?, as there is now a
compelling need for reform. However, that reform must be radical enough to improve
outcomes, access and fairness whilst also ensuring that the system is sustainable.
Age NI has been calling for a fundamental review of social care, as we believe that
social care is broken and it is now not only time for reform, but time to deliver on that
reform.
Age NI strongly advises that the fundamental building blocks of reform
including primary legislation covering all areas - statutory framework on
entitlements, assessments, quality and outcomes etc; legal reform of social
care law including safeguarding; and funding must be put in place. This must
not be solely about funding. It is vital that these measures run in parallel to
form a comprehensive package of reform.
Age NI’s Response on Who Cares?
Our response to Who Cares? will outline what we consider are the key elements
that are fundamental to the reform of social care in Northern Ireland. Who Cares? as
an initial discussion document outlines the main areas in relation to social care.
However, the vision as outlined in the document does not reflect the founding
principles and is more about process issues than a fundamental vision for social
care. As you know, Age NI has developed its own vision for social care in
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conjunction with older people and key stakeholders and underpinning principles for
this vision. We are therefore recommending that the vision is amended to
reflect the aspirations of what we need to achieve and accomplish for the
future of social care. The ‘how’ (‘working across government…’) can come later
and can serve as a clear guide for future action.
Context
Northern Ireland, like the rest of the UK is experiencing demographic shifts in terms
of ageing and life expectancy. Older people’s reliance on a range of services,
including health and social care, to maintain their independence will become
paramount no matter where they live within the UK.
Evidence suggests that although life expectancy is increasing, healthy life
expectancy is not increasing at the same rate. People are spending longer time living
with conditions that seriously reduce their quality of life such as arthritis, the effects
of stroke, or dementia. Current trends in obesity and other lifestyle-related diseases
will also increase the need for care. These trends confirm that the social care system
will experience sustained pressure in meeting the needs of increasing number of
people across all ranges with care and support needs.
The evidence on the changing demographics are well rehearsed but worth re-stating.
Figures from the 2011 census show that those aged 65 and over represent 15% of
the population in Northern Ireland and the percentage increase in those over 85
since 2001 is 35%1.
The numbers of older people, especially those over 85 who are most likely to need
care will increase. By 2025, the number of persons aged 85 and over in Northern
Ireland will increase by 25,000 or 83% and women at this age will significantly
outnumber men at 62% of this population group2.
Whilst we are experiencing the same demographic shifts as Great Britain, we have
not travelled the same road in relation to public policy on social care. These debates
in GB had been on the agenda since the publication of the Royal Commission in
1999 and recently culminating in the Draft Care and Support Bill and Caring for Our
Future White Paper. Age NI wants to stress that it is vital that we do not repeat the
tortuous road travelled in GB on the reform of social care since 1999. We need
political leadership by the NI Executive to secure real reform We accept that this is
complex and difficult, particularly in the current financial climate, but the point of
1
NISRA (2011) Statistical Bulletin Census 2011: Population and Household Estimates for Local Government
Districts in Northern Ireland
2
NISRA (2011) Statistical Report, Population Projections 2010
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devolution was to make a difference for all of the people of Northern Ireland – take
hard decisions, but make a difference.
Therefore, the momentum gained through Transforming Your Care must be
sustained but not limit the radical reforms so desperately needed in social care to
become a reality. Not to do so would be to betray the current and future generations
of people who rely on the care and support the system provides.
Age NI’s Vision and Underpinning Principles
Age NI has a vision of what social care should look like – ‘quality integrated social
care that recognises the rights, aspirations and diversity of us all, and is based
on the right to live with dignity, independence, security and choice.’
At the heart of our vision is a system that enhances wellbeing and independence, so
that older people can continue to engage socially and maintain self-esteem, dignity
and purpose. This vision and principles have been informed by older people
themselves and in partnership with key stakeholders and experts in the field.
In order to realise this vision, we have developed the following set of principles and
values that should underpin the provision of social care:
 Valuing care
This means valuing older people, the choices they make about the care that they
want and receive. It also refers to the value that we as a society place on care and
the role of the carer.
 Autonomy and Respect
Recognising the uniqueness and individuality of older people is essential if we are to
promote and deliver culturally appropriate social care services.
 Citizenship
The provision of social care needs to be driven by a clear and unambiguous set of
legal rights and entitlements and that older people if needed, are supported in
making decisions by the provision of independent advocacy.
 Belonging and Inclusion
It is important that the provision of social care is also about older people maintaining
links to their communities and families, as these meaningful relationships are
important for combating isolation and exclusion.

Independence and Self-determination
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It is important that the focus is on older people remaining independent and that the
emphasis is on the outcomes that they want for themselves, instead of a list of predetermined services.
In addition, we have developed a series of evidence reviews to correspond and
support our vision of social care. These Evidence Reviews draw on findings from
research to ensure that policymaking is underpinned by a strong and robust
evidence base. These are available on our website3:
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Dignity
Rights
Prevention
Personalisation
Outcomes
Age NI’s Tests for Reform
For our work on social care, we have developed a number of tests for reform based
on our vision and underlying principles and values:

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Quality: It must ensure delivery of high quality, personalised services that
promote the dignity and rights of older people and place a stronger emphasis
on prevention.
Clarity: It should promote simplicity, clarity be based on rights and
entitlements, and build in the advice and support people need to navigate the
system.
Equality and Human Rights: It should be founded on human rights and
equality principles to secure equal participation for older people.
Independence: It must promote independence, enable older people to
exercise informed choice and control over the services they receive.
Sustainability: It must provide a long term funding settlement that strikes the
right balance between the individual and state funding.
Affordability: it should deliver a settlement that is affordable to prevent
disproportionate costs for those on moderate to low incomes and those with
long term or high cost disabilities.
3
http://www.ageuk.org.uk/northern-ireland/for-professionals/policy/health--social-care/health--socialcare-policy-papers/
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AGE NI / DHSSPS JOINT DISCUSSION EVENTS ON WHO CARES?
Age NI and the DHSSPS held two successful joint discussion events to facilitate the voice of
older people in the consultation on Who Cares? The Future of Adult Care and Support in
Northern Ireland .
Over 240 people participated in the events. Discussions were held in small groups, each led by
an Age NI Peer Facilitator. Key themes raised were
Prevention: Providing ‘that little bit of help’ when it is first needed can help keep people out of
acute care or nursing/residential care; all levels of assessed need should be funded.
Promoting Independence: Social care should enable people to remain in their own homes,
connected to their families and communities and have a good quality of life.
Enabling Choice: Care must be tailored to need and individualized; it should not be just
choosing from a list of services that are available.
Carers: The system should not make the assumption that people have family to care for them.
Carers must be adequately recognized with appropriate respite provision, and carers allowance
should continue to be paid after pension age.
Quality of Care including Safeguarding and Standards: Quality standards must be
guaranteed for all regardless of where care is provided; appropriate safeguards must be in
place and robustly upheld for vulnerable people whether they are in nursing/residential care or
receive care in their home.
Accessing and Navigating the System: The current system is cumbersome, complicated and
difficult to manage. Easy to understand information about options should be available from a
central ‘hub’ which has up-to-date information about both statutory and voluntary services in an
area.
Combatting Isolation: Social contact is important for people to maintain good health especially good mental health - and feel connected to their communities. A broad view of social
care should recognise and link people into the work these organizations, which are primarily in
the community and voluntary sector, carry out to promote inclusion and reduce isolation.
Importance of Community and Voluntary Organizations: Community/Voluntary
organizations provide many excellent services which form a vital part of prevention, but their
funding is precarious at best. Core funding and funding for longer-term periods should be
provided to continue these programmes.
Domiciliary Care Staff, Time and Tasks: Care worker must become a valued job with better
pay, training and respect. Care workers must be given enough time to care – 15 minutes is not
enough – and the flexibility to do what the client needs.
Related Issues of Transport and Fuel Poverty: Social Care cannot operate in isolation.
Transport is an important contributor to remaining independent; but in rural areas especially the
current poor provision can be a barrier to keeping people connected. Many older people have a
constant concern about money and really do have to choose to ‘heat or eat’. Cold can be a
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factor in ill health and there should be an improved fuel poverty strategy targeted at the most
vulnerable.
Balance of Responsibility (Funding): There was a lot of discussion on a variety of funding
options, but no agreement on how to fund social care in the future. The only agreement was on
the issue of assets – people should not have to sell their homes to fund care.
Dispelling the Myths of Ageing
As the population ages, the issues surrounding the provision and funding of health
and social care for older people who require it have become more visible and more
contentious. However, while estimates may predict the size of the population that will
be over the age of 65 years in the future, it would be wrong to assume that the agerelated level of need for health and social care services will continue to be the same
as at the present time.
At present, the majority of people up to the age of 65 years are healthy, and thus
make low-level demands on the health and social care system. Between the ages of
65 and 80 years, they are still relatively healthy, though they use slightly more
services. It is only above the age of 80 years that the demand for health and social
care services increases rapidly. The average annual cost of providing health and
social services to an adult male or female ranges between £1,000 and £2,000 up to
the age of 64 years. It ranges between £2,000 and £4,000 for a man or woman aged
between 65 and 79 years, rising sharply for a person over the age of 80 years, to a
maximum of £12,000 for a woman or man aged over 85 years4.
It is important that we identify the appropriate provision of care depending on age
ranges. For example for older people aged 65 to 75, provision may need to centre
around loss, bereavement and social isolation with the appropriate services in place
such as counselling, advice and opportunities to participate. For those aged 75 to 85
there may be some limited loss of capacity to live independently, therefore
technology or re-ablement may be useful strategies to employ. Those over 85 may
have severe loss of capacity, both physical and mental and end of life issues. High
quality intensive domiciliary and or palliative care may be needed at this stage as
well as institutional and hospitalisation if appropriate. Whatever the provision, Age NI
recommends that there should be an unrelenting focus on outcomes for individuals;
the type of care that they will value and that they need to maintain their
independence, dignity, security and choice. In addition, we need to consider building
the resilience of all people in Northern Ireland to ageing and ageing well. We need to
DHSSPS (Oct 2010) Strategic Resources Framework: Health and Social Care Expenditure Plans for
NI by Programme of Care and Key Service 2009-10, Tables 2 & 3, p. 14, available at
http://www.dhsspsni.gov.uk/strategic_resources_framework_report_2009-10.pdf
4
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prepare for our later years across a number of domains and be able to adapt to our
changing circumstances as we age.
Older people are not a homogenous group and robust planning is needed to capture
the lived experiences at the different transition points outlined above. The
experiences of an 85 year old with complex co-morbidity issues will be different to
someone of the age of 65 without complex needs. The need for disaggregated data
on older people is essential if we are to deliver services that meet their needs and to
ensure that when we reach 80+ we are in better health. We are proposing that
further research on the older old (those 80+) to capture their lived experiences to
understand this cohort and their specific needs.
Current Model of Social Care
Evidence gathered through our discussions with older people suggest that the
current model of social care is based on outdated ways of working that result in poor
value for money and does not always meet the outcomes that those in receipt of
care expect. Age NI is proposing that we have one seamless system of social care
that does not distinguish due to age. Our Advice and Advocacy line is aware of older
people who turn 65 and are transferred to the Programme of Care 4: Elderly Care
and find that the services on offer are not as comprehensive or as focused on
maintaining their independence. We previously noted the distinction in our response
to Transforming Your Care on the differences between older people and those who
are physically disabled and the resulting differences in service provision5.
We recognise that change takes time; however, a failure to act over the quality of
care will result in care that is inadequate and inconsistent. Furthermore, failure to act
will mean that:
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

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The system remains baffling with little or no information available to older
people and their families who often find now that ‘you need to be really bullish
to get the care and support you need’6
Assessments are inconsistent and only based on a person’s suitability for a
particular service rather than the outcomes that they value for their wellbeing
Prevention is not a priority
Families are forced to pay top-up fees for residential and nursing care
The status of the social care workforce remains low, with limited investment
and pay. There needs to be a strategic attention to workforce planning.
In our report, ‘Would you Have Sandwiches for Your Tea Every Night? Older
people’s views of social care in Northern Ireland7,’ older people told us that they felt
5
6
Age NI (2013) Age NI’s Response to TYC: From Vision to Action. Belfast Age NI
Age NI / DHSSPS Joint Events
12
that their care needs were reduced to pounds and pence and that in many instances
they felt that they were required to justify their need for the service as if they were in
some way maximising what they could from the system.
In addition, there is a lack of awareness on the part of those delivering the service of
what it means when older people move from independence (personhood) to needing
social services (patients). One woman attending one of our joint consultation events
said ‘sometimes you just want to disappear and not have to deal with the indignity of
losing your health or your mind or your life8’
At our joint consultation events with the DHSSPS, we heard first hand stories of how
family members were discharged from hospital late in the evening, without the
knowledge of family members. One participant spoke of her horror to find that her
father had been discharged at 10pm, dropped off outside his front door with no-one
at home and no basic provisions in place. Again and again we hear that ‘dignity
always seems to be undermined9’.
Similarly, participants at this event highlighted issues that have been raised by the
United Kingdom Homecare Association10 recently. Their survey in 2012 highlighted
that the time of the visit from a care worker is increasingly being commissioned for
thirty minutes or less. A staggering 87% of respondents from Northern Ireland
reported that Trusts are commissioning very short visit times for frail older and
disabled people (42% in Wales and Scotland; 73% in England). The UKHCA survey
also reported that the use of 15 minutes calls are evident and as high as 28% in
Northern Ireland. These concerns were echoed by participants at the joint events
who constantly referred to care workers not having enough time to even, ‘bid the
time of day11.’
In addition 87% of providers in Northern Ireland (34% overall) in this survey reported
concerns that undertaking personal care tasks in such short visits, risked the dignity
of the users, and a number also expressed concern over compromising safety. The
UKHCA questioned whether inappropriate commissioning of short visits by Trusts
amounts to institutional abuse.
The UKHCA survey also stated that Trusts/Councils had become more interested in
securing a low price over the quality of the service delivered and that many of them
had seen a real term decrease in the price paid. Of more concern was that 77% had
no price increase and 15% reported price decreases. Age NI as a care provider has
7
Age NI (2011) Would you Have Sandwiches for Your Tea Every Night? Older people’s views of
social care in Northern Ireland. Belfast. Age NI
8
Age NI / DHSSPS Joint Events
9
Age NI / DHSSPS Joint Events
10
UKHCA (2012) UKHCA Commissioning Survey 2012: Care is Not a Commodity. UKHCA. Sutton
11
Age NI / DHSSPS Joint Events
13
seen a reduction in the hourly rates paid by the HSC Trusts over the last 3 to 4 years
and whilst we have maintained to deliver high quality care, we have had to use the
Charity’s resources to maintain this level of care.
Current Evidence
The Commission on Dignity in Care for Older People report, Delivering Dignity,12
highlighted the undignified care of older people in hospitals and care homes. They
recognised that the undignified care of older people does not happen in a vacuum, “it
is rooted in the discrimination and neglect evident towards older people in British
society.” They concluded that the care system must bar the way to prejudice, instead
of absorbing the poor attitudes to ageing and older people. Care staff should become
beacons for the rest of the community, demonstrating how we are all “richer when
older people are respected, valued and cherished13”.
The Auditor General’s14 recent report on the Health and Social Care Sector, noted
how targets can be an important tool in monitoring performance in the Health and
Social Care (HSC) sector. However, he cautioned that, “Care however needs to be
exercised to ensure that targets are directed at key performance measures and that,
in striving to reach a target, there is no detrimental impact on the overall care
received by patients”15.
The events at Mid Staffordshire echo similar concerns in that the Inquiry Chairman,
Robert Francis QC, concluded that patients were routinely neglected by a Trust that
was preoccupied with cost cutting, targets and processes and which lost sight of its
fundamental responsibility to provide safe care16.
These and other recommendations, whilst aimed primarily at the NHS Acute Sector,
have obvious resonance for the social care sector in Northern Ireland who are
responsible for the health and wellbeing of older people, particularly those who are
vulnerable.
Francis concluded that his recommendations do not necessarily require massive
organizational change but rather a renewed emphasis on “what is truly important –
adherence to common values, intolerance of non-compliance and a commitment to
openness and candour at all times17.”
12
Dignity Commission (1999), Delivering Dignity: Securing dignity in care for older people in hospitals and
care homes. London.
13
Ibid p7
14
Comptroller and Auditor General for Northern Ireland (2012) General Report on the Health and Social Care Sector
15
Ibid paragraph 3.15
The Mid Staffordshire NHS Foundation Trust Public Inquiry Chaired by Robert Francis QC, Feb 2013
17
Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry, Letter to Secretary of State, Robert
Francis, QC, 5th February 2013
16
14
Report after report has detailed shocking examples of how older people and their
families have been let down when hospitals and care homes and care at home fail to
deliver decent care or treat them with dignity. As an organisation, we continue to
see too many cases of neglectful and abusive care and it must be remembered that
older people, particularly those with complex needs and cognitive impairments or
with reduced mobility are exposed to higher risks of neglect, abuse and social
exclusion and isolation.
For Age NI sadly many of the issues that were raised by the Mid Staffs inquiry - older
patients not provided with adequate nutrition and hydration, their personal hygiene
not attended to, and not being treated with dignity and respect – are still today
experienced by older people in both health and social care settings.
Lastly, we cannot ignore evidence of ageism and negative attitudes towards caring
for older people. Expressions such as ‘bed blocker’ that imply older people are a
burden or a nuisance and patronising or dehumanising language are still sadly a
feature of our health and social care system in Northern Ireland today.
We know what good quality care can look like no matter what the setting; at home; in
a residential or nursing care; or supported housing. 'My Home Life18’, ‘The
Commission on Dignity in Care for Older People19’ and, JRF’s report on ‘Older
People’s Vision for Long-Term Care20’, clearly state that creating environments
where positive relationships which promote personal identity and self-esteem needs
to be recognised and put at the heart of care provision.
Given the recent reports outlined in this response on neglect, abuse, starvation and
even death in some instance, coupled with a care system that seems to have lost its
way and purpose, Age NI is of the firm belief that this is a once in a lifetime
opportunity to put things right and develop a social care system that has caring at its
heart.
Age NI proposes that this reform process should put I place a system that is built on
learning’s from current evidence and a clear vision of the important role that social
care can play in delaying and preventing higher levels of need as well as the
provision of high quality care
18
http://myhomelife.org.uk/about-us/
http://www.nhsconfed.org/priorities/Quality/Partnership-on-dignity/Pages/Commission-ondignity.aspx
20
http://www.jrf.org.uk/publications/older-people-vision-long-term-care
19
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Essential Components for the Reform of Social Care

Benevolent Prejudice: Ageism
So much of our public debate and particularly in health and social care is consumed
by a vision of older people as dependant, frail, in need of services and support that
we can sometimes miss the reality. Older people can and do contribute to the ongoing development of communities and society in Northern Ireland, as carers,
volunteers, mentors, employees, employers, campaigners and grandparents to
name but a few. Even when an individual requires intensive care and support, this
can be done in a way which engages and promotes the participation of the
individual, a capabilities framework.
Therefore, the language of care for older people should shift from one of services to
one of rights, needs and outcomes particularly for the proposals emanating from
Who Cares? This means that assessments should be a consideration of a person’s
social care needs and the outcomes they wish to achieve and should not focus on
the person’s suitability for a particular service. The current narrow reach of a needs
assessment ignores the outcomes that older people want from the provision of care,
such as housing, transport, and broader issues such as personal identity, selfesteem, social and intimate relationships and a sense of belonging to and
participating in their community. For Who Cares? to deliver on its proposals, social
care needs to deliver for older people as this will ensure that they remain at home,
maintaining their independence and dignity for as long as possible. This will not only
result in better outcomes for older people but deliver savings and help with the ‘shift
left,’ that is envisaged in TYC.
The department may wish to consider whether institutional ageism - when the
outcomes of an organisation or system achieves for people of different ages are
unjustifiably different, even where this is not the intention of the people providing the
services – is the cause of the discrimination and prejudice faced by older people.
Age NI believes that unequal treatment is often linked to people’s unacknowledged
attitudes or the ageist culture of an organisation.
Age NI is proposing that the concept of benevolent prejudice and ageism is
understood and tackled to ensure that older people realise the benefit of a
rights based model of social care.

Law Reform for Adult Social Care in Northern Ireland
Social care will undergo significant change in the coming years through the
recommendations of Transforming Your Care and Who Cares? Adult Social Care
and Support in Northern Ireland. Together these public policy initiatives have the
16
potential to significantly transform social care – a system we all agree is broken and
in crises. Given the importance of social care, it is a matter of concern that the legal
framework is not fit for purpose and we consider that Who Cares?, provides an
opportune moment to address this situation.
Social Care Reform in GB
The Law Commission in GB undertook a review of adult social care in England and
Wales in 2008 stating that, “it is of little surprise that not only does the law perplex
service users and social workers, but also the judiciary21.”
The Law Commission’s report recommends bringing together the disparate
legislation relating to adult social care and create a unified framework to provide
clarity for local authorities, as well as service users and carers.
The Coalition Government has accepted the proposals from the Law Commission
and the Draft Care and Support Bill is currently being progressed at Westminster.
The main elements of the Draft Bill relate largely to England and Wales.
Legal Framework in Northern Ireland
The current legislative framework for social care in Northern Ireland dates back to
1948 and it is a confusing patchwork of statutes without a clear and principled
approach to assessment and service provision. In addition, there is also a great deal
of ‘soft law’ in the form of guidance and departmental circulars.
The law reflects the policy imperatives and understanding at the time of enactment.
For example Section 1 (1) of the Chronically Sick and Disabled Persons (NI) Act
1978 uses out dated and discriminatory concepts of disability such as ‘dumb’
‘handicapped by illness’ and congenital deformity.’
The enactment of the Human Rights Act has given rise to a number of concerns
about the compatibility of key aspects of adult social care law with the European
Convention of Human Rights. The recent report by the Northern Ireland Human
Rights Commission, In Defence of Dignity, 22 identified many practices that raised
human rights concerns over certain practices in nursing homes such as toileting
regimes and restraint.
The Joint Committee on Human Rights, The Care Quality Commission and the
Equality and Human Rights Commission in GB have issued damaging reports on the
provision of social care in all settings in recent years.
21
22
Law Commission, Adult Social Care: Scooping Report (2008)
NIHRC (2012) In Defence of Dignity, NIHRC Belfast
17
In addition evidence has shown that older people are reluctant to complain about the
provision of health and social care generally. Furthermore those who do progress
their complaint to judicial review, the complaint is often settled at the last minute by
the HSC Trust, thereby limiting a detailed examination of the law surrounding various
aspects of the provision of social care by the judiciary.
The purpose of law reform in adult social care should be to provide clarity for service
users, carers and providers about entitlements to services and which services are
available. This also provides the opportunity to bring adult social care in line with
modern understandings of disability and eradicate the discriminatory and
stigmatising concepts that persist in law for older and disabled people. This will have
the added benefit of increasing public confidence in the fairness and transparency
and accountability of the law.
Therefore, the goal should be to create an effective legal framework that can
accommodate current and future policies whilst also maintaining the core
entitlements that have been established over the years. Therefore, consolidation and
simplification would be best achieved by establishing a unified adult social care
statute. The Law Commission in GB in ensuring that their proposals were capable of
underpinning future developments in policy stated,
“In our view, the better approach is to create, as far as possible, a neutral
legal framework that is not wedded to any particular policy and is capable of
accommodating different policies and practices in the future. Underpinning
this framework are the core entitlements and rights that are crucial to the
existing legal framework.23”
Age NI has corresponded with both the Department of Justice, the Law Commission
in Northern Ireland and the Commissioner for Older People, on undertaking a reform
of the law on social care to coincide with the timetable on Who Cares? We
understand that this aspect forms part of the Commissioner for Older People’s work
programme for 2012 – 2013 and that the Law Commission is keeping this under
consideration.
Age NI is proposing that the legal framework is reformed alongside and
parallel to the developments on policy and funding.
23
Law Commission, Adult Social Care, Law Com 326 p5
18

Statutory and Legislative Provisions for Health and Social Care
Goods, Facilities and Services
Age NI welcomes the commitment in the Programme for Government, 2011-2015 to
extend age discrimination legislation to the provision of goods, facilities and services.
Like the GB legislation, we recommend that this covers health and social care and
bans age discrimination by pubic bodies when exercising public functions. We note
that Standard 2 of the Service Framework for Older People refers to, Equality of
Opportunity and Eliminating Discrimination. In our response to this recently24, we
outlined our concerns that the indicators would not capture age discrimination.
Therefore, we are recommending that similar to GB, a review of discrimination in
health and social care is carried out to determine the extent of age discrimination
across the health and social care sectors.
The introduction of age discrimination legislation in health and social care is likely to
mean that a service provider or practitioner (such as a health and social care trust or
an individual practitioner) will have to justify, if challenged, any aged-based
decisions. In particular, the health and social care provider will have to show that the
treatment complained of was a proportionate means of achieving a legitimate aim.
The extension of the age equality legislation to these areas is important due to the
wide ranging services included in health and social care; for example, specialist
medical and psychiatric interventions in hospital community settings, short or long
term packages of health and social care support for adults, and the services for
people with complex physical, sensory and learning disabilities.
It is of note that the UK Government is of the view that the introduction of age
legislation in Great Britain will ‘require practitioners in health and social care to make
a thorough assessment based on an individual’s needs in order to objectively justify
a decision. It will allow practitioners to take into account an individual’s age where it
is right to do so, but not where it is not’. The UK Government is also of the view that
the legislation ‘will ensure better access to services allowing older people a fairer or
more equitable access to diagnoses and treatment by ensuring that age is no longer
used as an arbitrary indicator, rather than the individual’s health’25.
In GB a review into discrimination based on age was carried out in 2009 which found
that ‘despite recent progress and the good service received by many people of all
ages, age discrimination remained an issue for the health and social care system
which all organisations needed to address26.
24
For all or work on social care see the following link - www.ageni.org/socialcare
Crothers, I., Ormondroyd, J. (2009) Achieving Age Equality in Health and Social Care
26
ibid
25
19
The review highlighted the need for greater consistency across all locations and all
services covering young and old people in order to tackle hidden or covert age
discrimination. It also found that some age groups, especially older people, were
much more likely to receive poor services.
Age NI is proposing that a review on age discrimination in health and social
care is carried out in Northern Ireland, led by the DHSSPS.
Section 75 of the Northern Ireland Act
Under Section 75 of the Northern Ireland Act 1998, public authorities have to have
due regard to the need to promote equality of opportunity between persons of
different ages. However, S75 does not grant individuals the right of redress in court
where they feel that they have been unjustly discriminated on the grounds of age
when assessing a service.
Age NI is unclear how Section 75 of the Northern Ireland Act 1998 has promoted
equality of opportunity for older people in health and social care. Indeed health
inequality gaps appear to have increased despite over 10 years of this positive public
duty. It is important that legislative and statutory drivers are reflected in Who Cares?,
as key mechanisms in the drive to eliminate discrimination and ageist attitudes for
older people.
Age NI is proposing that Section 75 is embedded in all aspects of health and
social care, and specifically the social care reform process.
Human Rights
There have been a number of reports recently across the UK on the treatment of
older people across all care settings which detailed the failure to meet basic
standards of care. In Defence of Dignity27, and Inquiry into Older People and Human
Rights in Home care , by the Equality and Human Rights Commission (EHRC),28
highlighted practices that raised human rights and equality issues. The EHRC Inquiry
revealed some very poor practice and drew attention to concerns relating to Article
3 – Right to freedom from inhuman and degrading treatment and Article 8 –
Right to respect for private and family life. Concerns such as physical and
emotional wellbeing, including support with food preparation, eating and drinking,
physical abuse, neglect of personal care, financial abuse, lack of autonomy and
choice, inflexibility of services, lack of respect for privacy, lack of personal security
and insufficient attention to diverse needs.
27
NIHRC (2012) In Defense of Dignity: The Human Rights of Older People in Nursing Homes. Belfast
NIHRC
28
ECHR (2011) Inquiry into Older People and Human Rights in Home Care. London ECHR
20
Concerns were also expressed in relation to older people’s social and civic
participation, the impact of isolation and the difficulties for many in maintaining family
relationships. The purpose of the Inquiry was not to assess whether human rights
had been breached in individual cases, but it became clear to the Commission that
some older people were likely to have been victims of breaches of their rights under
the European Convention of Human Rights (ECHR). In the worst cases, the Inquiry
heard of older people not being fed, or being left without access to food and water, or
in soiled clothes and sheets. In numerous other instances, older people were
ignored, strip-washed by care workers who talked over them; confined to their home
or bedroom; put to bed in the early afternoon; and unable to participate in their
community.
Gap in Coverage of Human Rights
However, there is an anomaly in that private individuals and bodies are not public
authorities for the purposes of the HRA unless they are performing a public function.
Our partner, Age UK29 has campaigned to ensure that older people in private
residential care homes or who are paying the costs of their residential care are
protected by the HRA.
It is however not just through legal argument and cases that the Human Rights Act
helps improve services for older people. One of the recommendations of the Joint
Committee on Human Rights30’ report into healthcare was that the Government,
other public bodies and voluntary organisations should publicly champion an
understanding of how human rights principles can underpin a transformation of
health and social care services. Some public bodies have already opted to use a
human rights approach in commissioning, training and service delivery which has led
to improved services.
Age NI is proposing that a thorough review of human rights standards is
undertaken as part of the reform of social care to ensure the underpinning of
social care policy, practice and regulation by human rights standards and law

Older People, Prevention and Social Care
We note that preventative measures have been highlighted as a particular focus in
Who Cares? We warmly welcome this as we have long called for the Department to
provide strategic policy direction in this area. We believe that without this direction or
29
For a full analysis of human rights and older people see http://www.ageuk.org.uk/professional-resourceshome/policy/equality-and-human-rights/
30
Joint Committee on Human Rights, The Human Rights of Older People in Health Care, 2007
21
leadership, prevention will remain limited and ad hoc. We hear often from older
people that they feel current social care provision is ‘reactive not preventive31’
As we noted in our response to TYC, Fit and Well and the Service Framework for
Older People, the usual preventative messages of alcohol, obesity, smoking
cessation are valued and necessary, however for older people some of these may
not be appropriate or suitable. For many older people, the provision of ‘that little bit of
help,’ can result in the reduction of health inequalities faced by older people through
programmes that combat isolation and ensure that they are linked into their local
communities. The overwhelming feeling at our discussion events was that ‘social
care should do more to keep your independence. Why does your life have to stop?’32
In our response to the TYC consultation process, we noted that the initial TYC report
referred to ‘that little bit of help,’ and the Partnership for Older People’s Projects. This
was welcome, but has not followed through the subsequent documentation, apart
from re-ablement. Re-ablement is just one component of a preventative agenda and
on its own will not deliver the ‘shift left’ or the reductions in Emergency Department
attendances and admissions.
Prevention is broadly defined to include a wide range of services that:



Promote independence
Prevent or delay the deterioration of wellbeing resulting from ageing,
illness or disability
Delay the need for more costly and intensive services.
Preventative services represent a continuum of support ranging from the most
intensive services, through to early intervention and finally promotion of wellbeing
provided by a range of health and social care professionals. The emphasis is on
maximising people’s functioning and independence through approaches such as
rehabilitation, intermediate care and re-ablement.
There is clear evidence that projects which promote early intervention and
independence show how this approach, through a strategic shift to prevention and
early intervention, can produce early outcomes and greater efficiency for health and
social care. Older people themselves acknowledge that ‘a little bit of help can go a
long way to preventing further ill health if it is something the client themselves feels
will help them’. 33Examples include the Ageing Well Reach in Northern Ireland,34
31
Age NI / DHSSPS Joint Events
Age NI / DHSSPS Joint Events
33
IBID
34
CENI (2009), Evaluation of Ageing Well Reach. Belfast CENI
32
22
First Connect Service35 and the Partnerships for Older People Projects36 in Great
Britain.
The recent evaluation of the Partnerships for Older People’s Projects (POPPS)
demonstrated that these projects lead to cost reductions in secondary, primary and
social care:37




For every £1 spent, hospitals save £1.20 in emergency beds
47% reduction in overnight hospital stays
29% reduction in A&E departments
11% reductions in outpatient appointments.
Overall, low-level practical support initiatives such as simple housing adaptions in
relation to safety and security to running older people’s active lifestyle programmes
can have dramatic outcomes for older people and are of great importance to older
people themselves.
In addition, we welcome the development of re-ablement across the Health and
Social Care Trusts in Northern Ireland. However, we recommend that this is seen as
a component of a wider prevention strategy. We held a joint seminar with SCIE in
March 201238 on prevention and social care. In this seminar our key experts
highlighted the spectrum of prevention from wellbeing and maintaining independence
through minimising disability and maximising functioning, noting that re-ablement
was within this spectrum.
The use of technology Telecare has the potential to provide benefits for the target
users, their family carers and the health and social care systems as a whole.
However, it is not easy to prove the benefits of telecare. Telecare is relatively underresearched and there are associated methodological problems in the existing
research. There is very little work done on how telecare works in practice, i.e. the
impact of telecare implementation on existing roles and responsibilities not just in
terms of formal health and social care services, but also informal/family carers and
social networks of older people. There are also ethical challenges involved, as
telecare can involve surveillance and monitoring of people who are vulnerable,
isolated or have diminished capacity39.
35
Blake Associates (2009) Evaluation of First Connect Service: Age Concern Help the Aged NI
PSSRU, The National Evaluation of Partnerships for Older People Projects, London DoH
37
PSSRU, The National Evaluation of Partnerships for Older People Projects, London DoH
38
http://www.ageuk.org.uk/northern-ireland/for-professionals/policy/health--social-care/age-ni--scieseminar/
39
The Role of Telecare in Supporting Carers of Older People, 2011. Dublin. CARDI
36
23
Therefore failing to take this opportunity to provide a departmental strategic focus on
prevention will fail to address the outcomes that older people want for themselves
and fail to deliver on Who Cares?
Age NI is proposing that in the first instance the Ministerial Priorities for
Action reflect targets and measures for social care preventative measures
including technology which could become a key driver for delivering low level
preventative services. Furthermore, we are proposing that the DHSSPS
develop an overarching strategic prevention strategy for older people.

Carers
Carers are also fundamental not only to the success of Who Cares? but to the health
and social care system generally. Our concern is that there is the potential to transfer
the risk to carers, many of whom are under significant pressure at present. Many
carers who are older themselves are at risk of burn out,, social exclusion and
isolation The current system is predicated on a carer in place, which given changing
family demographic, is un-sustainable for the long term. Age NI is proposing that
when an older person is being assessed, their needs should be recorded as if no
carer was available. This would ensure recognition of the carer’s enhanced
contribution and of the attendant risks such as the carer being unable to provide care
due to illness or a change in their circumstances. In our joint discussion events, older
people were clear that ‘the government should not be making that assumption that
everyone has family to care for them’40.
Therefore, services for the carer need to become an integral component of the care
package as the quality of life of the carer is closely linked to the quality of life of the
person in need of care.. We also need to acknowledge that family members should
have the right to refuse to provide care and likewise the older person has the right to
refuse to receive care from a family member or friend.
Evidence from our Advice and Advocacy Service suggests that while carers are
sometimes offered an assessment under the statutory duty to do so, the uptake on
these assessments, as well as the actions arising from the assessment, are very
low. The reasons for this appear to be that carers are not provided with specific
information on what an assessment is or the options available of how this can be
beneficial to both the carer and the person being cared for. There is also a sense of
complacency that there are no services available to enable the carer to provide the
care that they do.
40
Age NI / DHSSPS Joint Events
24
Age NI is proposing that assessments are undertaken as if there is no carer in
place and that carers are fully supported to carry out their role and.

Supported Housing
Age NI believes that the link to appropriate housing and health is well documented
and we are pleased to see that the discussion document refers to supported housing
under the Supporting People Programme. The value of supported living in
maintaining independence and links to local communities is vital and as our 85+
population increases dramatically this form of support will become more prominent in
the future.
This is particularly pertinent to older people, as we know that although poverty levels
are stabilising in Great Britain in Northern Ireland, however the problem feels more
intractable. In addition to rising poverty levels, we know that fuel poverty rates
amongst older people are shocking for the 21st Century and again higher in Northern
Ireland than the rest of Great Britain.
Age NI is supportive of older people remaining at home for as long as possible and
that is what older people want for themselves. Indeed, it is something we all aspire to
no matter what our age or health status. The focus in TYC also reinforces home as
the hub of care. Where a person’s home is no longer suitable or viable due to
disability, condition of the home and or poverty/fuel levels, supported housing will
become a viable alternative to residential or nursing home care.
There are a number of developments on going that may present an opportunity for
the DHSSPS to consider alongside with the Northern Ireland Housing Executive and
the Department for Social Development the role of supported housing and where
responsibility should lie. The role and function of the Northern Ireland Housing
Executive is currently under review and the Northern Ireland Executive is considering
the number and function of departments and Arm’s Length Bodies, therefore Age NI
is proposing that consideration is given to looking at the possibility of
incorporating the function of supported housing within the DHSSPS.

Workforce Planning
The social care workforce is increasingly provided by the voluntary and independent
sectors and this is likely to increase given the direction of Transforming Your Care
and Who Cares? Services for older people in need of care should be provided by
skilled and competent workers with decent salaries, stable working conditions, and
25
manageable workloads. Opportunities for continuous learning and improvement
should be available to all and caring should be seen as a viable and progressive
career for both women and men.
The low level of rates for care has a knock-on impact on workforce development with
care workers being low paid, limited access to training and development and high
turnover rates. There were many comments on this subject in our discussion events,
with the overwhelming majority feeling ‘if you give more time and training for care
workers to care properly then we may be able to keep people out of hospital and
other more expensive forms of care’41
In our qualitative report, ‘Would you Have Sandwiches for Your Tea Every Night?
Older people’s views of social care in Northern Ireland’42, older people told us that
dealing with so many different social care personnel was demanding and upsetting
for some participants, “You need to know who is calling… you need the same
person…not different people all the time.”43
The lack of any increases and in some cases cuts in hourly rate has affected the
value of carers working in the independent and voluntary sectors. Driving down costs
may result in short-term budgetary gain, but for the long term this is
counterproductive, not only to the care workforce but for the success of social care
reform.
It has been of great concern to Age NI that training on a range of issues is usually
only available to statutory health and social care staff. For example, most Health and
Social Care Trusts provide falls prevention training to its staff. However as over 60%
of social care provision is delivered by the independent sector, a significant
opportunity has been missed. It is vital that the statutory health and social care
sector maximises the opportunity to include opportunities for the Independent sector
to avail of training opportunities.
Age NI is concerned that not enough thought of the mid to long term implications of
poor workforce planning has taken place. The impact of demographics could put at
risk the future of the quality of care for older people.
The success of Who Cares will be reliant on a good quality workforce and direct
engagement with key groups associated with care in the voluntary and community
and independent sectors is vital.
41
Age NI / DHSSPS Joint Events
Age NI (2011) Would you Have Sandwiches for Your Tea Every Night? Older people’s views of
social care in Northern Ireland. Belfast. Age NI
43
Ibid, page 18
42
26
Age NI is proposing that a strategic overview of workforce planning is
undertaken immediately

Role of the Voluntary and Community Sector
The benefit of the voluntary and community sectors has been highlighted in TYC
and Who Cares? as the sector is key to supporting the delivery of the proposals
contained within TYC in the first instance. Government funding to the voluntary and
community sector is £260 million, 45% of the sector’s income. Most of this goes to
pay for services, which the sector delivers so efficiently that it saves public money44.
Many preventative and other services are provided by the voluntary and community
sector organisation, where funding is often precarious.45 Reduction in funding to
voluntary organisations that provide this kind of service may lead to the removal of
very valuable support services to older people who may not be eligible for publicly
funded home care services, which are targeted at those with critical or substantial
needs.
Resilience and Capacity of the 3rd Sector
In terms of resilience of the sector and their capacity to engage with the HSCB as
equal partners, it is vital that the infrastructure of the sector is supported. For
example, there are 36 projects in the Belfast area that are working directly on
interventions that impact on primary and secondary care. Unfortunately, 17 of these
projects are fragile and 19 are contract funded. These types of services are at the
forefront of prevention and tackling social isolation and it is this type of service that
will be in the position to deliver on ‘that little bit of help’ that is vital if older people are
to remain at home.
However if the infrastructure of the sector is not supported these groups will no
longer operate, therefore leaving older people at risk. In our engagement with the
Sub Regional Networks, they told us that much of the unfunded work that they and
their group members do – bowling clubs, classes, luncheon clubs and gardening
deliver preventative outcomes, but this is not understood by the Trusts, nor is this
work properly recognized as a core component of prevention. This was evident in the
joint events we held in February with the DHSSPS, in that many of the participants
belonged to groups or simply felt that they had a duty as good neighbours, called
regularly with other older people to “have a yarn,” baked scones, cakes etc and
44
Information sourced from Community NI website (http://nicva.org/projects/smart-solutions-toughtimes), Feb 2011
45
E. Stone (2010). Response to the Scottish Government Finance Committee Inquiry: To consider
and report on how public spending can best be focussed over the longer term on trying to prevent,
rather than deal with, negative social outcomes, York, Joseph Rowntree Foundation, p. 7.
27
carried out small tasks. This was not funded by anyone, but carried out through a
sense of duty and compassion.
However, these participants also noted that many of the young people in their areas
had to leave to find work elsewhere, therefore no-one would be around to care for
their parents and grandparents. The demographic shifts and changing family
patterns are well known, and therefore this reform of social care must be based on
these patterns and trends. Failure to do so is tantamount to building on quicksand.
The culture of commissioning and procurement needs to be fundamentally reviewed
to ensure that a more progressive approach is developed and based on the social
model rather than medical model of care. It is vital that commissioning is informed by
research and evidence.
A recent report from the Northern Ireland Audit Office46 highlighted that a number of
principles contained in the Compact47 were not being applied as widely or as
systematically as they might be. Specifically, the report said:
‘The principles requiring wider application include:



Maximising the sector’s contribution to the policy process from the
development phase through to implementation, monitoring and evaluation
Developing the ability of all government funders to manage the funding
relationship effectively, and Sector organisations’ ability to deliver their full
potential
Fully and consistently applying the ‘good practice’ resourcing and funding
mechanisms, including, for example full cost recovery, timeliness of payments
and proportionate monitoring and audit.’
This has been borne out in an Audit Commission report,48 which highlighted that in
order to strengthen the voluntary sector’s ability to deliver public services, there
needs to be improvement in the use of good partnership working, appropriate
funding, and that capacity building should complement good commissioning practice
by public sector bodies. The reality is that the sector currently do deliver a large
range of public services across Northern Ireland and in the context of the current
fiscal situation, are well placed to continue this role in working with and supporting
communities and individuals. The sector also adds value in working to collate the
46
Creating Effective Partnerships Between Government and the Community and Voluntary Sector,
NIAO, September 2010
47
Building Real Partnership – Compact Between Government and the Community and Voluntary
Sector NIO Dec 1998
48
Audit Commission (2007) Hearts and Minds: Commissioning from the Voluntary and Community
Sector
28
experience gathered in providing services and translating this into credible policy
analysis to feed into the policy development process within government.
Age NI has also spent a number of years working to support the development of a
strong and vibrant age sector comprised of 11 sub-regional networks and
approximately 2,000 local older people’s groups. This sector delivers strong
opportunities to keep older people active and engaged their communities. Recent
research has highlighted that the sector engages 70,000 + older people on an
annual basis49. However, nearly a third of the age sector respondents for Age NI’s
Social Capital research in 2009 felt that recognition of their work was ‘very poor –
poor’50. Age NI believes that this infrastructure is an important and core resource
which is already working to develop and sustain positive ageing and active
citizenship.
Age NI is proposing that infrastructural support to the voluntary and
community sector is specifically considered as part of the reform process.

Balance of Responsibility
Age NI accepts that the current system is unfair and many older people and their
families feel aggrieved at having to sell their family home to pay for care. Age NI has
previously outlined questions that should be used to frame the debate about the
future direction and funding of adult social care:
1. What quality and outcomes should services achieve, how can they do this,
and how much will this cost?
2. What should be the scope of services that everyone is supported to access,
from ‘that little bit of help’ through to nursing and end of life care?
3. How should the cost of the system be allocated between individual and
collective responses, and what mechanisms can be utilised to facilitate this?
Although most of the focus to date has been on funding social care, the third
question above, it is in fact impossible to answer before there is a consensus on the
first two, which will determine the cost of the system.
As the DHSSPS are aware, Age NI has not come to a final decision on the balance
of responsibility for those who need social care and support. We are working with the
Law Centre on a number of components of social care and one aspect is around
economic modelling. What is clear from the financial information presented by the
49
Older people and voluntary action: citizenship, civic engagement and welfare. Emerging evidence
from Ireland, north and south; Nick Acheson, Arthur Williamson and Brian Harvey; 2010
50
Social Capital research into the relationships between the age sector and statutory sector, CENI,
2010
29
Department is that families and individuals currently bear the balance of
responsibility in regards to care and support.
We understand that the DHSSPS are undertaking economic modelling and it is
critical that the data available is robust and that sufficient data is available to
measure living standards in Northern Ireland. As outlined earlier, Northern Ireland
unfortunately tends to ‘top the polls’ across a range of indicators and this must be
taken into account in any economic modelling exercise. Simply adopting an English
model will not capture the true extent to poverty and wealth in Northern Ireland as
well as the growing health inequalities.
There are a number of other principles that should inform further work on the funding
of care and support:

Age should not be used as a proxy to pay – a reformed funding system should
not assume that older people will have more wealth. Care should continue be
provided on the basis on need and wealth a secondary consideration.

Priority should be to protect those with little or no wealth and ensure that the
care they receive is of high quality.

There is a need to consider that assets may have a number of different claims
on them.

We need to be wary of adverse impact if charging is introduced for care in the
home. Evidence shows that older people may simply not meet their care
needs and stay out of the system until they end up with significant care and
support needs at a later stage.

Intergenerational equity: older people pay VAT, rates, income tax, inheritance
tax etc. it is therefore important not to assume that the costs of care will fall on
those under 65. As the Default Retirement Age embeds many more people
over 65 will be working.

Asset ownership: NI has seen a 65% decrease in household prices? This
was the single biggest point of agreement among older people attending our
consultation events – ‘no one should have to sell their home to fund care. A
person’s home is the centre of their live and very important emotionally;
selling it is devastating.’ The future assets of today’s under 55’s are likely to
come from the distribution of housing wealth usually downwards from
inheritance. There is a need to examine the impact this is likely to have if
current parents need to use their housing wealth to cover care costs.
30

Prevention should be a core element – funding system should support (and
incentivise) preventative measures

The system is complex and any revised system must be clear and easy to
understand with information, assessment, brokerage and advocacy services a
core component and fully funded

It is vital that we have a broad consensus on the funding of social care reform,
including political agreement and leadership.
For the balance of responsibility to be sustainable and fair it is essential that this is
informed by the vision and founding principles of social care reform. In addition, a
reformed funding system like other aspects of social care reform must be flexible and
responsive to medium and long-term uncertainty regarding demand.
Age NI is proposing that the funding framework must be compatible with the
review of social care legislation, and other policy initiatives such as
eligibility/assessment criteria and meet equality and human rights standards.

Attendance Allowance and Disability Allowance
Attendance Allowance (AA) and Disability Living Allowance (DLA) are non-means
tested social security allowances, which are paid to help with the costs of disability.
In the past, it has been suggested that disability benefits could be integrated into the
care and support system in order to target resources on those in greatest financial
need and to remove duplication.
However, we like our partner organisation, Age UK, strongly believes that the current
entitlements should continue (albeit with scope for integration within a single
system). These benefits provide highly valued flexible support, which promotes
independence and helps with the costs of disability.
Targeted support
AA and DLA are targeted at people who are ‘severely disabled’ as set out in
legislation which provides the criteria that people have to meet. This is judged using
a detailed application and assessment process. It can be difficult for many older
people to admit to needing help and they often delay making an application If there
was an intrusive means-test as well as an assessment of disability this would act as
an additional barrier. Ensuring people have the support they need as soon as
possible helps people maintain independence. Without this people may require
support through social care or health services at earlier.
31
Although the benefits are not means-tested research shows that they predominantly
support lower income disabled people. Nearly half (48%) of AA recipients have prebenefit income below the standard Pension Credit guarantee credit level as
compared to just over a fifth (22%) of those not in receipt of a disability benefit51.
These findings are likely to reflect the higher levels of disability among people from
lower social economic groups and the lower probability of people with disabilities in
higher income groups making a claim52. Any withdrawal of disability benefits is
therefore likely to disproportionately those with lower incomes.
The impact of AA and DLA
Disabled people face many additional costs in addition to the need to pay for care.
Examples include higher fuel bills, special food, transport, laundry, communication
needs and extra clothing costs. In these cases, receiving cash is important, giving
individuals flexibility about how they meet their own needs, and avoiding the need for
care.53
Research carried out by Age UK, research found receipt of disability benefits has a
hugely positive impact on older people’s wellbeing and has the ability to transform
lives. In an Age UK survey of over 650 people benefiting from our information and
advice services nearly 90% had applied for AA and DLA54. The main items they used
the allowances for were practical help and care services or additional living costs
such as heating and food, which are often higher for people with disabilities. Older
people told us how the extra money enabled them to keep well and independent. For
example people susceptible to the cold because of health problems could maintain a
warm home; people could make payments for help such as shopping and cleaning
which enabled them to remain at home and could cover the costs of special diets or
extra laundry. These uses of the allowance seem very much in line with the policy
intention of helping people meet the costs of disability and the quotes below
demonstrate the impact:
‘Attendance Allowance has made a big different physically and emotionally. My life
has taken on more meaning’
‘I feel the cold extremely because of my health……Receiving Attendance Allowance
means we have been able to leave the heating on during the day without worrying
about the bill’
51
Attendance Allowance and Disability Living Allowance claimants in the older population: Is there a
difference in their economic, circumstances? Hancock, Morciano and Pudney, 2010.
52
Evidence from Universities of Essex and East Anglia to Health Select Committee
http://www.publications.parliament.uk/pa/cm200910/cmselect/cmhealth/22/22ii.pdf
53
Review of international evidence on the cost of disability, Stapleton, Protik and Stone, DWP, 2008.
54
Transforming lives Age UK, 2008
32
‘Attendance Allowance enables me to live more the way I used to’
In summary from feedback, we have had older people value AA because:

It enables older people to buy in whatever they need to remain independent in
their own homes.

People can spend it on whatever they think will improve their situation. This is
very individual as health conditions vary and change over time.

There is no book keeping. AA compared favourably with personal budgets
which some had indirect experience of from friends who found them onerous.

They can maintain friendships, hobbies and interests leading to social
inclusion and stronger mental health.

It enables people to retain their dignity. Older people do not feel like a burden.
It is not means tested therefore there is no stigma.
Recipients of AA and DLA are reported to use the benefit to meet the expenses of
personal care, transport, food, fuel, home maintenance, healthcare, telephones and
computers, and social activities55. Research has also highlighted that recipients often
feel the benefits they received had a preventative advantage so that they were able
to stay at home rather than move into a care home, and they were able to maintain
their health.
Recipients of AA and DLA are reported to use the benefit to meet the expenses of
personal care, transport, food, fuel, home maintenance, healthcare, telephones and
computers, and social activities. Research has also highlighted that recipients often
feel the benefits they received had a preventative advantage so that they were able
to stay at home rather than move into a care home, and they were able to maintain
their health.
According to research carried out for the Department for Work and Pensions, people
receiving DLA thought that they benefited because it helped them maintain
independence and control, meet some of the extra costs of disability, improve quality
of life, keep jobs, enhance physical and mental health, maintain warmer and cleaner
homes and relieve financial pressures.
The impact of Disability Living Allowance and Attendance Allowance: findings from exploratory qualitative research, Corden,
Sainsbury, Irvine, Clarke, Department of Work and Pensions, 2010.
55
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Should AA and DLA be treated differently?
Both DLA and Attendance Allowance are intended to help with the extra costs of
disability – not to provide basic income maintenance or replace earnings or
pensions. The research referred to above found no difference in the pre-benefit
income between people aged 65 receiving DLA and those receiving AA. We believe
people should be treated based on their needs, not an arbitrary age. We would
strongly oppose any moves to remove entitlements to disability benefits from older
groups, especially given AA is already less generous because it does not include a
mobility component.
An overlap with care services?
Many people who receive AA or DLA will not be eligible for social care services
because the threshold for social care services is set much higher and so fewer
people are entitled to this type of support; or because they have a carer who is
assessed as meeting their support needs (but not necessarily their extra costs).
However even when someone is entitled to both AA/DLA and is assessed as
needing personal care they generally do not get double support because the
allowances paid is taken into account in the financial assessment for services.
Should AA and DLA be integrated with care services?
Age UK completed some very detailed analysis of the effect of integrating benefits
and services under proposals for a National Care Service, put forward by the
previous Government. They were very concerned that the financial advantages of a
new funding system (at that time suggested models were Partnership and
Comprehensive) would be more than outweighed by the future loss of entitlement to
AA. The main points were:

It seems unlikely that a care assessment could assess need as consistently
as the current AA system.

A national entitlement could be replaced by support which could be more
easily changed and may be cash limited, and this may involve more means
testing than the current system.

It seemed likely that many older people would receive less help under the
proposed ‘partnership’ model than from disability benefits. This is because all
support above a minimum level will be means-tested. Additional the proposed
criteria for state support would have been unlikely to include all who would
otherwise have been entitled to AA.
34

The proposed partnership and comprehensive models would continue to take
support from informal carers into account, whereas AA is awarded regardless
of the availability of informal care.

We were concerned that some of the additional costs of disability would not
be covered under the new proposals.
For a care service entitlement to be equivalent to AA and DLA there would need to
be:





Clear and enforceable national guidelines around the assessment
National training and monitoring for all staff carrying our assessments
A consistent review and independent appeal system
No strict limitations on the use of the money
An entitlement to support based on need which is not cash-limited.
Many of the arguments made about the removal of Attendance Allowance and
Disability Living Allowance remain pertinent. There was no clear evidence that the
reforms would be beneficial, and in fact our analysis showed that many more people
would lose out, both financially and because they would not receive care or a benefit
of cash. If the Commission is considering the removal of these disability benefits
there are clear tests of fairness, reach and effectiveness to be met.
Age NI in conjunction with our partner organisation Age UK, would only
support changes to the disability benefits system with firm guarantees about
eligibility set down in law and if it was clear that the reach and level of support
of the improved system would be as wide as it is now.

Implications of the ‘Dilnot’ Proposals in NI
We understand that the department is planning to undertake an economic modelling
exercise for the next phase of Who Cares? However in the first instance it is useful
to note that the Coalition Government in GB have accepted in principle the
introduction of a cap on social care costs; £61,000 in 2010/11 or £75,000 in 2017/18
prices; and an increase in the upper capital threshold for means tested support
£100,000 in 2010/11 and £123,000 in 2017/18 prices56.
Age NI considers that the statement from the Department of Health in responding to
the recommendations from the Dilnot Commission have the potential to impact on
56
Department of Health, (2013) Policy Statement on care and support funding reform and legislative
requirements.
35
the provision of social care in Northern Ireland Although the proposed reforms
applies to England only – social security and tax benefits are UK wide. Therefore,
any changes to tax and benefits are subject to the parity principle under the Northern
Ireland Act 199857. There are also questions about how changes in the English
social care system will affect the block grant, through the Barnett Formula.58
If the Northern Ireland Executive chooses to ignore the recommendations from the
Dilnot Commission, then it is likely that older people in Northern Ireland will be worse
off:

Changes to the means test from £23, 250 to £100,000 for institutional based
care will mean that older people in England will be able to keep more of their
assets, whereas older people in Northern Ireland with capital above £23,250
will have to continue to sell their homes to cover the cost of this care.

Proposals recommend that older people pay for food and accommodation in
institutional based care, but this is also capped at £10,000. Again resulting in
older people in Northern Ireland being worse off.

The Dilnot proposals refer to all types of social care. Older people in England
pay for the social care in the home. People in Northern Ireland currently
receive this free. However, this is not sustainable or fair. Health and Social
Care Trusts are tightening eligibility criteria meaning that only those with high
complex care needs are being met, leaving many older people without the
care they need to stay independent and healthy.

For those who reach adulthood with a care and support need in England this
would be provided by the state free of charge. For those disabled adults in
Northern Ireland and those who acquire a care and support need throughout
their adult life will either have to release their assets to pay for this care, if
institutional based, or not have all their care and support needs met due to
tightening eligibility criteria and reductions in care hours provided.

The capacity of the financial sector to supply insurance products to Northern
Ireland can be limited. It is common for all types of insurance products to
exclude people from Northern Ireland and insurance products usually cost
more simply because of the postcode.
57
The Northern Ireland Act 1998 determines that the Secretary of State and the Northern Ireland Minister
(DSD) consult one another with a view to providing a single system of social security, child support and
pensions for the United Kingdom.
58
HM Treasury (2010) Funding the Scottish Parliament, Welsh Assembly Government and Northern Ireland
Assembly: Statement of Funding Policy, http://cdn.hm-treasury.gov.uk/sr2010_fundingpolicy.pdf
36
Age NI is proposing that the DHSSPS consider the implications of the cap and
rise in the means-test for Northern Ireland
Conclusions
Age NI has a vision of what social care should look like – ‘quality integrated social
care that recognises the rights, aspirations and diversity of us all, and is based
on the right to live with dignity, independence, security and choice.’
At the heart of our vision is a system that enhances wellbeing and independence, so
that older people can continue to engage socially and maintain self-esteem, dignity
and purpose.
For older people today in Northern Ireland there are a number of challenges increasing life expectancy is not necessarily being matched by parallel increases in
healthy life expectancy. Northern Ireland fares worst of all regions in the UK in this
regard. While women in the UK can expect to have 63.9 years of disability free life,
women from Northern Ireland can expect just 60.3 years; poverty amongst older
people is rising; fuel poverty figures for older people are shocking and rising excess
winter deaths in the 21st Century are unacceptable In other words, a higher level of
need for health and social care is anticipated in Northern Ireland than in other
regions of the UK.
Thus, a good understanding of the challenges of an ageing population is vital as the
right strategic policy decisions that are sustainable over the long term are needed.
Without this type of analysis within health and social care there is a risk that
unsustainable polices might be pursued, which require sharp corrective policy
adjustments in the future.
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Appendix 1
The Current Situation
The following is a list of the legislation, key public policy and overarching guidance
surrounding adult social care in Northern Ireland:
National Assistance Act 1948
Health and Personal Social Services (NI) Order 1972
Chronically Sick and Disabled Persons (NI) Act 1978
Mental Health (NI) Order 1986
Housing (NI) Order 1992
Disability Discrimination Act 1995
Northern Ireland Act 1998
Human Rights Act 1998
Disabled Persons (NI) Act 1999
Carers and Direct Payments Act (NI) 2002
The Health and Social Care (Reform) Act (NI) 2009
UN Convention on the Rights of Persons with Disabilities (2006)
Public Policy
People First: Community Care in the 1990’s (1993)
Regional Access Criteria for Domiciliary Care, ECCU2/2008, 27th May 2008
38