Disability Federation of Ireland
Submission to
National Carers’ Strategy – Consultation
18 April 2008
Disability Federation of Ireland, 8 Fumbally Court, Fumbally Lane, Dublin 8
Tel: 01 4547978, www.disability-federation.ie
1.
Introduction:
The Disability Federation of Ireland welcomes the Government’s commitment to
develop a strategy for family carers as set out in the Social Partnership Agreement
“Towards 2016”. As a representative body for voluntary disability organisations, DFI
is very aware of the extensive supports that many of our organisations provide to the
families and carers of people with disabilities as part of their holistic approach to
providing specialist services. The strategy needs to acknowledge and value the role
of all family carers and the contribution they make to the enhancement of quality of
life of people with disabilities, as well as the fact that they are key stakeholders in the
roll out of the National Disability Strategy 2004 (NDS).
The first section of this submission therefore, sets out the policy context and
highlights principles for consideration for a robust strategy that arise out of existing
Government policy and legislation. The second section raises issues on income,
Independent Assessment of Need, health, training and housing and the third section
lists DFI’s recommendations for the Carers’ Strategy. DFI has also contributed to a
joint submission as part of the Carers’ Strategy Consultation Group (CSCG)1,
comprising of twelve national representative bodies of stakeholders in the caring,
disability and older people sectors.
2.
Policy Context:
The strategy will need to respond to the NESC Report (2005) which recognises the
need for a new paradigm for the design and delivery of public services in the 21st
century:
“The profound demographic, economic and social changes Ireland is
experiencing are demanding a major reappraisal of how care is provided to
vulnerable members of the population – young children, children with special
needs, persons with disabilities and older people” 2
Part of this new paradigm has been the National Disability Strategy, with its strategic
elements: the Disability Act 2005, six Sectoral Plans and the commitment to a multiannual funding package. It laid out for the first time a new way of working that
Carers’ Strategy Consultation Group comprises of the following organisations: Age Action Ireland,
Alzheimers Society of Ireland, Care Alliance Ireland, The Carers Association, Caring for Carers,
Crosscare, Cúram Ireland, Eirí Corca Baiscinn, Disability Federation of Ireland, Irish Farmers
Association, Inclusion Ireland, Irish Senior Citizens Parliament, People with Disabilities in Ireland
2
NESC Strategy: People, Productivity and Purpose, December 2005.
1
recognises the interconnectedness of those services that facilitate the life process. It
must be recognised that as key stakeholders, family carers are pivotal to the
attainment of the high level goals of the NDS as set out in Section 33.1 in the new
Social Partnership Agreement and the Carers’ Strategy must take account of this.
The vision and long term goals that the Social Partners agreed in Section 33.1 of
Towards 2016 are ambitious. Achieving them by 2016 will in considerable part
depend on carers enabling the person they care for to live independently, to
participate in community activities, educational and other opportunities. Indeed the
importance of carers is recognised in the goal, “Every person with caring
responsibilities would have access to appropriate supports to enable them to meet
these responsibilities alongside employment and other commitments.”3
The development of a Carers’ Strategy is timely since the Midterm Review of the
Partnership Agreement is considering further initiatives in light of experience to date
and the goals that had been set. It is important that the Carers’ Strategy identify
actions and milestones for achieving outcomes that move us towards the goals, and
take into account the other initiatives underway that are likely to have an impact on
family carers.
We also recognise that the family carers are key stakeholders in the National AntiPoverty Strategy on Social Inclusion 2007 – 2016 and the delivery of the Primary
Care Strategy (2001). Caring is undoubtedly a cross sectoral issue and as such, will
need to interlink with commitments made in ‘A Vision for Change’(2006), the older
people’s and children’s sectors, in addition to the disability sector in order to ensure
that an adequate infrastructure of care is provided for carers.
2.1
Caring Across the Lifecycle:
Changing demographics and the increasing aging population (NESC 2005) all pose
challenges for the development of the strategy. The incidence of disability rises
exponentially with age: a 65 year old person is nine times more likely to develop a
disability than a person aged 15-24 years.4 There is a positive correlation between
3
4
Social Partnership Agreement “Towards 2016”, 31.1.
Gannon B and Nolan, B. 2005. The Dynamics of Disability and Social Inclusion in Ireland:
The Equality Authority and NDA
aging and increased incidence of disability, this in turn increases the need for
families to assume caring roles.
It is difficult to exactly quantify the number of family carers in Ireland. The 2006
Census indicates that there are in the region of 161,000 Family Carers, 41,000 of
whom provide full time care for a family member. As family carers cross the life
cycle, there are also an invisible number of children as well as older people
providing care for family members, often with little or no support. CSO figures (2006)
indicate that there are over 18,000 family carers over 65, almost 9,000 of whom are
providing at least 43 hours of care per week.
At present there are no definitive statistics on the number of child carers in Ireland.
We do know from the 2002 census that 2,996 young people between the ages of 15
and 17 were caring for a family member. Using comparable studies in the UK and
this census figure, it is more likely that the true figure is somewhere in the region of
10,000. Children are liable to suffer physically, emotionally, socially and
educationally as a result of the burden of this work. It is clear that a lack of focused
action on this issue is in contravention of the UN Convention on the Rights of the
Child 1989, which Ireland has signed and ratified.5 Inadequate support structures in
terms of Personal Assistant Services, home care packages and respite have
resulted in the perpetuation of this intolerable situation for children.
We welcome the Governments commitment in “Towards 2016” to conduct further
research into identifying child carers, yet this is just the first step towards addressing
children’s’ rights and needs. The Strategy needs to respond to the diverse and
changing needs of all family carers as well as being cognisant of the changing needs
of those for whom they care. Given the diversity of the caring population, and those
that they care for, the Strategy will need to deliver an adequate care infrastructure as
stipulated by the Equality Authority Report, Implementing Equality for Carers (2005).
2.2
Caring as Social Capital:
The Strategy must recognise the economic and social importance of family carers
who provide high levels of unpaid care at home for children, adults and older people,
who may have a disability. As such family carers provide supports for people with
5
The Convention states that the child has the right to rest and to engage in leisure, play and
recreational activities and to participate in cultural and artistic activities (Article 31) and that
the State has an obligation to protect children from engaging in work that constitutes a threat
to their health, education or development (Article 32).
disabilities, enabling them to access health and social services. Caring is therefore,
one of the fundamental tenets of social capital. As an expression of the familial,
societal and intergenerational bonds which knit a society together, it is imperative
that people be given the choice and opportunity to care and be facilitated in that role.
Carers are recognised in the Government’s description of Active Citizenship for the
“enormous, sometimes heroic and difficult to measure contribution as ‘active
citizens’ to public welfare by caring for the elderly, the young or persons with
disabilities”6.
Where expectations placed on carers are reasonable and adequate supports are
provided, caring can be enriching and rewarding work. However, family carers too
often perform their roles in isolation with a poor infrastructure of supports and lack of
access to information. The Joint Oireachtas Committee on the Position of Full time
Carers (2003) states that it
“should be the aim of all statutory and voluntary support services to move the
carer away from the negative experience of caring, which has a harmful effect
on the carer, the care recipient and their families and friends, and towards a
more positive experience”.
This can only be achieved with a Carers’ Strategy that adequately addresses
the rights of carers and recognises that the roles that they take on come at a
cost to the individual in terms of missed opportunity, economic disadvantage
and increased health risks7.
2.3
Infrastructure of Care:
The Carers Strategy will need to circumnavigate the current fragmentation of service
delivery between different Government Departments. A lack of joined up thinking to
date has meant that family carers have encountered much difficulty in accessing
information on entitlements, or services for those that they care for and this results in
increased stress8. The research points not only to the need for increased availability
of accessible information, but integrated working between Government
Departments. Employment and training opportunities cannot be accessed without
changes in transport and employment policy, and enhanced respite support, for
example.
6
Active Citizenship. Concept of Active Citizenship. Taskforce on Active Citizenship 2007
Family Carer Health Survey, Care Alliance, 2007. (unpublished as at April 2008).
8
Listening to Carers, Report on a Nationwide Carer Consultation, The Carers Association in
Partnership with caring for Carers Ireland and Care Alliance Ireland 2008
7
The Governments Primary Care Strategy, with its shifting emphasis away
from hospital to community based care simply will not work without the labour
of the 41,000 fulltime family carers who provide unpaid care to members of
their families or social networks.
“ The aim of the primary care model will be to decrease the present
considerable reliance on hospital care and to move care, where
appropriate, from secondary to primary level, from primary to self care
(by empowering people) and from self-care to no care requirement
(through illness prevention and health promotion).”9
While home-based care is desirable for many reasons and is the preference
of most people, it cannot be expected to carry the future burden of supplying
the majority of care services unaided. The reality is that enabling people with
high level of needs to remain in their own homes is resource intensive,
requiring adequate investment in homecare packages, respite provision and
training for family carers.
Issues surrounding the mainstreaming model for people with disabilities, the
community based orientation of “A Vision for Change” and the medical model
employed by the older peoples’ sector highlight further difficulties for Family Carers.
Traditionally, services for older people have been structured around the medical
model of provision of care, whilst the National Disability Strategy emphasises a
social model of care. As the link between aging and disability increases, so too do
the pressures on carers, as these sectors have traditionally operated independently
with the result that provision of supports and services do not span all circumstances.
For example, someone under 65 with a diagnosis of dementia may not be able to
access appropriate services and this creates unnecessary strain on carers as well
as the recipient of care. There exist similar anomalies in transition from accessing
children’s services to adult services. It is clear that the strategy needs to speak to
existing strategies and exert its influence on the role out of the National Disability
Strategy, the Primary Care Strategy and recommendations in “A Vision for Change”
to name some.
9
Primary Care Strategy – A New Direction 2001
The Carers’ Strategy will therefore need provide for a level of flexibility that spans
not only different sectors in order to best meet the needs of family carers, it will also
have to take into account the ever evolving needs of carers as they, and the people
they care for move through the life cycle. The Strategy will also need to encompass
the principles outlined in Quality and Fairness10 and deliver an equitable, person
centred response to carers, characterised by quality and accountability.
It will therefore require a level of collaborative working at all levels of governance
and administration if it is to be manageable and ultimately successful.
2.4
Social Inclusion:
Recognising that in many cases the people in need of and benefiting from an
infrastructure of care are most often those that are vulnerable and marginalised in
our society, it is critical that issues of social inclusion be given due regard in the
strategy, and give credence to the fact that caring is more than just a health issue, it
spans accommodation, resources, social interaction and relationships and the
support to participate in the life of the community. Social inclusion of people with
disabilities in mainstream society and the social inclusion of family carers are
interdependent realities. Where family carers are marginalised, so too are those in
receipt of care.
Lack of supports and inadequate supports prevent full participation for carers in
society as the high reliance on family care masks the real cost to individuals, family
carers and society in terms of health, restricted opportunities and higher poverty
risks (NESC 2005). It is also clear that income, social status and social exclusion are
amongst key determinants of health that affect carers. Recent research11 also
indicates stress as a major indicator of self reported health status. In order to
address the evidence based needs of carers the following issues need to be
addressed by the Carers’ Strategy.
3
Specific Issues to be addressed in Strategy:
3.1
Income:
“Towards 2016” makes a clear commitment to review
10
11
Quality and Fairness, Department of Health and Children 2001
Family Carer Health Survey, Care Alliance, 2007. (unpublished as at April 2008).
“the scope for further development of the Carers Allowance, Carers Benefit
and the Respite Care Grant having regard to the recommendations of the
Equality Authority Report “Implementing Equality for Carers”, The Carers
Association Report “Towards A Family Carers Strategy” and the Joint
Oireachtas Committee on Social and Family Affairs Report on the Full-Time
Carers and other available research.”
In honouring its commitments and with reference to the current Government’s
thinking in relation to the non abolition of the means testing of the carer’s allowance,
it is imperative that the strategy makes adequate recompense to carers in terms of
expanding allowances, granting entitlement to medical cards, and expanding income
tax thresholds.
3.2
Independent Assessment of Need:
The Disability Act 2005 makes provision for an Independent Assessment of Need for
those with disabilities. Implicit at the Service Agreement point, is the availability,
capacity and levels of engagement of family members, be they parents, siblings and
sons or daughters to carry out a range of functions to supplement professional
therapeutic interventions such as speech and language therapy and physiotherapy.
This does not preclude the intimate and personal care requirements that may also
be present. In this regard, they are key to the successful role out of the Department
of Health Sectoral Plan under the Disability Act (2005). The person they are caring
for also needs “reasonable security that level of care will continue and not be
abruptly or unilaterally ended”12. It is not enough that people with disabilities’ needs
are responded to on foot of crises, it must be available as a timely response to
assessed need based on statistical or vouched knowledge. It is only by provision of
adequate supports for carers that they can continue in their caring role, should they
choose to do so. It would be entirely compatible with the NDS to introduce an
assessment of need for carers, in conjunction with the assessment for the person
with a disability.
3.3
Health Care for Carers:
The health needs of family carers is an issue that requires high level interventions,
including the introduction of preventative measures in accordance with the
Population Health Strategy. That family carers health is compromised in comparison
12
NESC Strategy: People Productivity and Purpose, (2005).
with the general population has been well documented in research.13 Unless carers
own health needs are attended to, they will not be able to carry out their key role in
supporting recipients of care to remain in their own homes in accordance with
Government policy.
3.4
Training:
DFI welcomes the commitments to provide training for family carers. Appropriate
training for family carers to assist them in carrying out vital tasks, including manual
handling and dispensing medication, is onerous and poses additional health risks for
carers. Without the support of family carers, many people with disabilities would not
be able to continue to live in their own homes, and thus the training needs of carers
must be given considered attention. It is not sufficient, however, to confine training to
the medical aspects of care, social and welfare needs and the longer term prospects
for family carers also need to be addressed.
3.5
Housing:
It is imperative that the house be equipped with the adaptations and
appliances that ensure that appropriate care is efficacious and safe for both
the family carer and the person in receipt of care. The Disabled Person’s
Grant Scheme was replaced on 1 November 2007 by new schemes that,
according to the Department of the Environment, Heritage and Local
Government involve “more streamlined operation in order to ensure the most
efficient and cost-effective outcomes from the funding available.14”
DFI has a number of concerns about the operation of the schemes.15 In
particular, the appropriate adaptations may not be obtainable when the
property owner’s income fails under the scheme’s means test and/or when the
cost of the adaptations exceeds the cap set for the scheme, and members of
the household will not or cannot pay themselves. A further issue is the ease
and speed by which an applicant under a scheme gets through the process.
It is essential that vulnerable people get essential supports without delay. A
person taking over caring responsibilities when a person leaves a hospital or
other rehabilitative institution should be able to expect that necessary
13
Family Carer Health Survey, Care Alliance, 2007. (unpublished as at April 2008).
DOELG Delivering Homes; Sustaining Communities page 61.
15
Carers were significant contributors to a CIB/DFI housing research project. Further information is
contained in Finding the Right Living Space (2008) CIB/DFI
14
adaptations will be in place. When a progressive condition exists, delays in
such provision should not put the wellbeing of either the family carer or person
with a disability at risk.
Some family carers are raising children with a disability who on reaching
adulthood should be entitled to their own home rather than remaining in the
family home. Local Authorities should not dismiss or discount applications for
social housing by adults living with their parents on the grounds that they
reside in a family home, or wait until crisis situations necessitate such a
move. Local Authority housing needs assessment and housing allocation
processes need to recognise and respect situations where changing care
needs and disability is a factor, in keeping with the National Disability Strategy
and the long term goals set out under Section 33 of “Towards 2016”.
4
Recommendations:
In the context of current legislation and Government policy, DFI makes the following
recommendations for inclusion in the Carers’ Strategy:

The Strategy will need to deliver an equitable, person centred response to family
carers, characterised by quality and accountability.

The Strategy must reflect the long term goals of “Towards 2016”, by including an
oversight management function that promotes and monitors progress. Key
outcomes and timeframes should be identified, with responsibilities assigned for
the actions that deliver those outcomes. Monitoring arrangements should be
described.

Given the diversity of the caring population, and those that they care for, the
Strategy will need to deliver an adequate care infrastructure.

Family carers are key stakeholders in the role out of the National Disability
Strategy, and the Carers’ Strategy needs to acknowledge and introduce measure
to support them in this role.

As key stakeholders in the rollout of the Primary Care Strategy, their inclusion in
the role out of Primary Care Teams is vital.

Carers should be protected by the operation of exit protocols and case
management arrangements when the person being cared for leaves an
institution or residential setting to return home and when that person’s
condition worsens.

The Strategy needs to identify the necessity for timely and appropriate supports
for family carers in carrying out their roles and introduce preventative measure to
ensure that supports are not only provided on foot of crises.

The Strategy needs to introduce urgent measures to prioritise packages to
alleviate the burden of those who are inappropriately caring for family members,
particularly older carers and child carers.

There is a requirement for a formal and comprehensive assessment of carers
needs which includes their healthcare requirements. Where appropriate, this can
be linked to the Independent Needs Assessment provided for in the Disability Act
(2005).

Adequate recompense for the valuable role of family carers needs to encompass
a range of measures including expanding allowances, medical card entitlement
and expanding income tax thresholds for eligibility not only to Carers’ Allowance,
but increased Respite, Housing Adaptation and other grants.

Cognisant of the Population Health perspective, social policy interventions must
provide, but also springboards to tackle early and recurrent disadvantage.

Family carers need to be explicitly targeted for prevention and screening
programmes in the Population Health Strategy.

A comprehensive Information campaign is required to address the information
deficit across all sectors.

Enhanced funding for all carers to access training - not just training related
directly to caring role but: also holistic & relevant to long term needs and
aspirations beyond and out with caring role.